1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

NICE ME/CFS guideline 2021 - Summary of events from January 2018 onward (from the S4ME News in Brief)

Discussion in '2020 UK NICE ME/CFS Guideline' started by Trish, May 31, 2022.

Thread Status:
Not open for further replies.
  1. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Note: I have collected these items for reference rather than for discussion, and will add to them as any further news is reported. The thread is locked so the history can be read without interruption from discussion of guideline developments which continues on other threads including this one.
    ____________________

    NICE ME/CFS Guidelines developments 2018 to 2022
    As reported in the S4ME News in Brief


    News items relating to the development, publication and implementation of the 2021 ME/CFS NICE guideline, as reported in the Science for ME weekly News in brief starting January 2018

    News in Brief - January 2018

    NICE guideline stakeholder meeting
    on 16th January at which S4ME will be represented.
    Thread here

    Letter to NICE: @Graham's letter to NICE has been finalised and will be sent on 16th January. You can add your signature to the letter.
    Letter here

    NICE Petition Appeal to NICE concerning the Guideline Committee for ME/CFS.
    You can sign the petition that supports the letter sent to Sir Andrew Dillon.
    Petition here Thread here

    NICE guidelines
    IiME
    letter to NICE requesting immediate withdrawal of CBT/GET recommendations from guidelines, and reply.
    Letters here Thread here

    NICE Stakeholder meeting was held on Tuesday 16th January. Thread includes reports or links to reports of several people who attended.
    Thread here
    Edit: PDF version here
    _______________

    News in Brief - February 2018

    Reply from NICE to Graham's letter
    Reply here Discussion thread here

    IiMER update on correspondence with Prof Baker on NICE Guidelines 9th February
    IiMER link here Thread here post #336

    NICE guidelines - Next steps in guideline development process announced.
    NICE announcement here MEA article here Thread here

    NICE - Petition to remove CBT/GET from NICE guidelines now.
    Petition here Thread here

    NICE guidelines: 2005-2007 NICE CFS/ME GUIDELINE DEVELOPMENT GROUP meeting minutes - copies now available.
    Thread here
    ________________

    News in Brief - March 2018

    NICE
    Guideline scoping workshop, Fri 25th May 2018
    Thread here Scope for current guideline Thread here
    ________________

    News in Brief - April 2018
    _____________

    News in Brief - May 2018

    UK NICE
    stakeholder meeting was held on 25th May. Timetable for future stages and Draft Scoping Report were published ahead of the meeting.
    MEA article with timetable Draft Scoping Report Thread here

    Trial by Error by David Tuller
    ''NICE’s Consideration of the Lightning Process''
    Includes an e-mail sent to two key members of the NICE guidance executive.
    Article here Thread here

    MEA ''NICE ME/CFS Clinical Guideline: Summary Report from Scoping Workshop by Dr Charles Shepherd | 30 May 2018''
    Detailed report on the scoping meeting held last week. Next step, written feedback from stakeholders. MEA will shortly be consulting its members.
    Article here Thread here
    _______________

    News in Brief - June 2018

    UK NICE

    The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018.
    NICE information here Draft scope here Thread here

    NICE are now looking for lay members to join the ME/ CFS guideline committee
    NICE information here Thread here

    Trial By Error
    by David Tuller
    ''A Letter to NICE About the IAPT Program''
    Article here Thread here
    _________________

    News in Brief - July 2018

    NICE guidelines -
    Stakeholder submissions to the latest draft scope document have been submitted to NICE, including from S4ME.
    Thread here
    _____________-

    News in Brief - August 2018

    Note - CDC published its new guideline

    Positive Health Online ''What Can We Expect from the Current Review of NICE Guideline CG53'' by Nancy Blake.
    Looks at some of the history and the process involved in developing guidelines including the limitations. Takes a pessimistic view of the likely outcome.
    Article here Thread here
    _______________

    News in Brief - September 2018

    UK
    NICE is seeking committee members for the ME/CFS guideline group including GP, physicians, nurse. Closing date 26th September. Some posts, including patient representatives, have already been advertised and interviewed.
    Details here Thread here
    ________________

    News in Brief - October 2018

    UK NICE guidelines
    NICE have published their final scope for their review of the diagnosis and management guidelines for ME/CFS.
    Guideline scope PDF here (9 pages) Thread here
    Stakeholder comments and developers responses PDF here (354 pages)
    List of members appointed so far to the Guideline Committee here Threadhere

    UK NICE guidelines committee appointments update

    Additional names added to the list of appointments are causing serious concern - see thread discussion.
    NICE committee list here Thread here post #106

    NICE guideline committee
    appointments update
    All posts have been filled except posts for 2 nurses and a dietitian.
    MERUK response here Thread here
    IIMER response: ''NICE Guidelines Development - Turning a farce into a shambles'' here
    MEA - no formal response yet. Some comments here post #336
    AfME response here Thread discussion here post #339
    Thread listing and discussing those who applied but were rejected here

    UK Parliament
    A group of MP's led by Carol Monaghan and Nicky Morgan presented a request to the Backbench committee for a parliamentary debate. They highlighted the PACE trial, the imbalance in the newly appointed NICE guideline committee, the harms done by GET and need to remove it, unjustified care orders on children, and the need for proper medical provision.
    Video here Thread here
    ______________

    News in Brief - November 2018

    UK NICE Guideline committee for ME/CFS update

    Dr William Weir has been appointed to the committee as a full member and Dr Charles Shepherd as a co-opted (non voting) member. Prof. Jonathan Edwards and Greg Crowhurst have been appointed as expert witnesses. Two nurses and a dietitian are still to be appointed.
    MEA statement here Thread discussion here

    UK - NICE guideline committee
    Patient evidence

    From the MEA facebook page: There will soon be an important announcement from the Forward ME group of patient charities regarding the collection of patient evidence that will be submitted to NICE.
    Thread here

    Letter from NICE

    A letter has been sent to people who wrote to NICE about guideline committee appointees. The letter includes this statement:
    Thread with copy of letter here

    Trial by Error by David Tuller
    ''Some thoughts about NICE''
    Appointments to the UK NICE ME/CFS Guideline review committee have mostly been announced. David's article discusses 'Groupthink in the UK', 'Tough task for GET/CBT proponents' who are or have been involved in clinical trial such as PACE, MAGENTA and FITNET who have allegiance to GET/CBT and to their flawed methodology, and 'The role of “eminence-based” medicine'. He concludes that the necessary robust discussion of ME/CFS treatments rooted in scientific principles is only possible if the committee adds a comparable cohort of biomedical professionals with some knowledge of clinical trials.
    Article here Thread here

    NICE ME/CFS guidelines committee

    Science for ME letter
    This forum has sent a letter to the chair of the NICE guideline committee (copied to NICE complaints) raising concerns about conflicts of interest for three appointees to the committee. The letter has been made public along with the replies.
    Thread with letters here
    _________________
     
    Last edited: Jun 3, 2022
  2. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - January 2019

    UK Forward ME Group CBT/GET Survey
    - Tell NICE your experiences.
    Survey closes 31st January 2019. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
    Survey here Thread here

    S4ME Letter to NICE Concerning Professor Chris Burton, NICE ME/CFS guideline committee appointee.
    Members of this forum wrote and voted to send a letter to NICE expressing concern about Burton's suitability to serve on the committee given his classification of CFS as MUS, and conflicts of interest concerning his current research methodology. The letter included a list of questions.
    A reply from the committee chair, Peter Barry says he cannot comment but our concerns are noted.
    Thread with letter and reply here

    UK Blog by Spoonseeker ''Coming down the Line''.
    Important and troubling issues are raised for the future diagnosis and treatment of ME in the UK. Suggests the NICE Guidelines for ME might be sidelined, with pwME being included instead under the umbrella term MUS /FND (Functional Neurological Disorder), and treated with CBT/GET. Other changes to management of long term conditions include groups facilitated by non medics, and cuts in drug prescriptions as part of NHS cuts.
    Blog post here Thread here

    UK Forward ME Group CBT/GET Survey
    - Tell NICE your experiences.
    Final reminder - the survey closes 31st January. The survey is designed for adults and children who have been diagnosed with ME, CFS or PVFS and who have undertaken or were offered CBT or GET in the UK since 2007. It will be independently analysed by a team from Oxford Brookes University, before being submitted to NICE at the end of February.
    Survey here Thread here
    ____________

    News in Brief - February 2019

    Letter to NICE
    The 25% ME group for severe ME sufferers has written a letter to Sir Andrew Dillon, Chief Executive of NICE. In a heartfelt and well reasoned letter the group spell out the severity of symptoms, lack of medical care, and damage done by exercise therapies. They ask NICE to remove the CBT and GET recommendations from the guideline immediately.
    Thread with link to letter here
    _________________

    News in Brief March 2019
    _________________

    News in Brief April 2019

    UK: CBT/GET survey results published
    The online survey was commissioned by Forward ME following discussions with the NICE guideline group chair and MP's, and analysed at Oxford Brooke's University.
    2274 took part reporting on their experiences of CBT and GET treatments for ME/CFS in the UK since 2007.
    ''In summary, the majority of individuals reported deterioration or no change in symptoms and health over the course of all treatment approaches.''
    MEA report including Forward ME summary here
    Oxford Brookes University full report by Professor Helen Dawes, 25 pages here
    Forward ME minutes including discussion of report with Prof Dawes here
    #MEAction summary here
    Thread here

    UK NICE guidelines
    Invitation to tender
    National Guideline Centre (NGC) calls for researchers to tender for involving children/ adolescents and adults with severe symptoms in developing a NICE guideline on ME/CFS. Proposals must be sent by 5pm on 24th April. [Update: Deadline extended 12 noon, 3rd May]
    More information here Thread here

    Register of interests for the NICE guideline committee has been published. 35 page pdf document. Concerns have been raised about inconsistencies. See thread discussion.
    Project documents page here Register of interests here Thread here

    First committee meeting minutes have been published.
    Topics discussed - diagnostic criteria, diagnostic tests and differential diagnosis. No detail given. There were also several presentations on roles and representation.
    Minutes here (pages 37-39) Thread here
    _________________

    News in Brief - May 2019

    UK - NICE guideline committee has repeated its call for researchers to tender for the project: ''Involving children and young people in developing a NICE guideline on ME/CFS diagnosis and management''. Deadline 10th June 2019.
    Details here Thread here
    ________________

    News in Brief - June 2019

    News in brief - July 2019
    __________________

    News in Brief - August 2019

    UK NICE guidelines
    Call for evidence

    ''We invite registered stakeholders, and other individuals and organisations with an interest to send any relevant published or unpublished information''. Deadline 4th October. Research evidence is required on a wide range of aspects of management, monitoring and outcomes, and the experiences of people who have had interventions including surveys.
    Details here Thread here

    The contract for collecting information from young people with ME to help inform the NICE guideline has been awarded to Professor Helen Dawes and her team at Oxford Brookes University in collaboration with Action for M.E.
    Thread here

    #MEAction UK ''NICE drag their feet on stopping the harm caused by GET and CBT''. An update on efforts to get NICE to suspend the GET CBT recommendations from the current guideline. #MEAction are collecting stories of patient currently being harmed by these therapies.
    Article here Thread here
    _______________

    News in Brief - September 2019

    UK - NICE The deadline for the call for evidence has been extended to 16th October. The evidence is requested under the headings:
    1. Studies that evaluate management strategies that are adopted while someone is being assessed for a diagnosis of ME/CFS, and methods of monitoring and/or reviewing people with a diagnosis of ME/CFS.
    2. Evidence on the experience of people who have had interventions for ME/CFS (not individual stories).
    NICE link with instructions here Thread here
    _______________

    News in Brief - October 2019

    NICE guideline call for evidence has now closed.

    UK #MEAction
    has submitted a detailed response to the NICE guideline committee's call for evidence on three topics relating to early management and ongoing review of patients with ME, and patients' experiences of treatments. The response included 111 studies, surveys and trials.
    Article here Submission here Thread here

    UK #MEAction survey results ''ME services in the UK not fit for purpose''.
    An online survey of UK people with ME had 1900 respondents in two weeks.
    Far more patients receiving initial advice to be more active deteriorated than those advised to do less; patients reported lack of ongoing support; and most wanted current services reorganised or replaced with consultant led clinics and ongoing expert support, not CBT and GET.
    The excellent detailed report has been submitted to the NICE guideline committee.
    Article here Report here Thread here
    __________________

    News in Brief - November 2019

    England and Wales - Online survey
    You are being invited to take part in a research study to explore the views and needs of patients with severe ME/CFS. This project has been commissioned by the National Institute of Health and Care Excellence (NICE). Research is being carried out by Dr Keith Geraghty of Manchester University.
    Information here Thread with link to survey here
    __________________

    News in Brief - December 2019

    UK NICE, the National Institute for health and Care Excellence, has announced that the expected publication date for the ME/CFS guideline changed from 14th October 2020 to 9th December 2020. This should ensure that committee members have sufficient time to consider the information from the call for evidence and from working groups on children & young people with ME/CFS and people with severe ME/CFS.
    Announcement here Thread here
    ___________________
     
  3. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - January 2020
    ______________
    News in Brief - February 2020

    #MEAction UK "Take Me Seriously" action targets the UK National Institute for Health and Care Excellence (NICE) ME/CFS treatment guidelines which still include the potentially harmful treatments GET and CBT. #MEAction UK is collecting comments & signatures until February 14. These will be printed on a card and sent to NICE.
    Details here Thread here
    _____________

    News in Brief March 2020

    UK NICE guidelines

    All NICE guideline development groups have been put on hold so staff can focus on work related to Covid-19, including producing rapid guidelines for Covid-19 care. This means the ME/CFS guideline due to be published later this year will be delayed.
    Thread here
    ________________

    News in Brief April 2020
    ________________

    News in Brief May 2020

    UK - Letter to NICE Olivia Blake, MP, member of the All Party Parliamentary Group on ME has written to NICE about the indefinitely delayed ME/CFS review. 'I hope you would agree that the risks posed to both current and future patients by the continued usage of graded exercise therapy and other harmful treatments shows an urgent need to resume rewriting NICE guidance for ME treatment, particularly as it is becoming clear Covid-19 will lead to many more people developing ME.'
    Thread with letter here
    _________________

    News in Brief June 2020

    UK - NICE guidelines for ME/CFS The schedule for writing the new guideline was delayed because of Covid-19. The consultation on the draft guideline will now start on 10 November, and the guideline will now publish on 21 April 2021.
    Thread here
    _____________________

    News in Brief July 2020

    UK NICE (National Institute for Health and Care Excellence)
    "Statement about graded exercise therapy in the context of COVID-19"
    A short statement saying they are aware of concerns: 'it should not be assumed that the recommendations apply to people with fatigue following COVID19'. It states that the ME/CFS guideline is under review, and directs readers to a recent NHS guide for aftercare for Covid-19 inpatients.
    Statement here MEAction article here Thread here

    Trial by Error by David Tuller
    NICE on Exercise and Post-Covid Syndrome

    A useful writeup on NICE's statement that recommendations of graded exercise therapy as fatigue treatment should not necessarily be applied to patients with fatigue following Covid-19. Tuller warns there is unfortunately still risk for post Covid fatigue being subjected to a "failed biospychosocial template".
    Article here Thread here

    ME Association "Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome"
    Drs Charles Shepherd and William Weir wrote a letter to NICE several weeks ago, signed by other clinicians on the ME/CFS NICE guideline committee, warning of the dangers of using the ME/CFS guideline on GET for post Covid patients. This resulted in the short statement from NICE (see last week's news). The article also reports Prof. Paul Garner urging clinicians to advise pacing, not GET for post Covid patients, based on his own and other patients' experience.
    Article here Thread here

    UK #MEAction has drafted a letter to be sent to MP's asking for a warning to be placed on the NICE ME/CFS guidelines about graded exercise therapy. The letter highlights the harm caused by exercise, and the implications for people with post Covid-19 fatigue who may develop ME and may be harmed by the current NHS England advice for Covid 'long haulers'.
    #MEAction article and letter here Thread here
    __________________

    News in Brief - August 2020

    #MEAction Open letter to NICE
    "Open letter demands action to safeguard people with ME, not just post-COVID patients"
    Asks NICE to give the same caution about GET for ME/CFS as for post-COVID.
    Letter here Thread here

    UK - NICE ME/CFS guideline
    The timeline has been updated. The consultation will now begin on 10 November 2020 and end on 22 December 2020, and the new publication date is expected to be 21 April 2021.
    Thread here
    __________________

    News in Brief - September 2020

    UK NICE guideline for ME/CFS update
    Review questions have now been published to enable stakeholders to prepare for consultation on the draft guideline which is due to start on 10/11/2020. The 13 questions include barriers to care and effectiveness of interventions.
    Document web page here Thread here

    UK NICE guidelines
    "
    Forward-ME Group – Graded exercise therapy for ME/CFS and COVID-19"
    ME Research UK has published recent correspondence between Forward ME and NICE in which they raised concerns about NICE's continuing recommendation of GET for ME/CFS patients despite their recent statement that GET should not be assumed to be appropriate for long Covid patients. Forward ME also raised concern about the recent NICE recommendation of exercise in the chronic pain guideline. NICE has replied by simply restating the current situation.
    ME Research UK article here Thread here
    ______________

    News in Brief - October 2020

    UK ME Association "Forward-ME: NICE issue clarification about new Chronic Pain Guideline & expand on statement for GET in Post-Covid-19" by Dr Charles Shepherd.
    A letter from Dr Paul Chrisp (NICE Director of the Centre for Guidelines) provides confirmation that the treatment recommendations in the draft Chronic Pain Guideline do not apply to people with a diagnosis of ME/CFS. The letter also clarifies that 'the recommendations in the ME/CFS guideline should not be applied to people with post-COVID-19 fatigue as they do not fall within the scope'.
    Article with copy of letter here Thread here

    Trial by Error by David Tuller
    NICE Draft Guidance on ME/CFS Coming Next Month

    A recap while we wait for the draft version of the new ME/CFS guidance from NICE. "The committee ended up including both people who believe in proper science and CBT/GET ideologues, so predicting the outcome is a challenge".
    Article here Thread here

    UK - NICE guideline for long Covid
    NICE and the Scottish Intercollegiate Guidelines Network (SIGN) announced this week that they will work with the Royal College of General Practitioners (RCGP) to develop a guideline on persistent effects of Covid-19 (Long Covid) on patients. It is expected that it will be published at the end of this year.
    Announcement here Thread here

    UK ME Association
    "ME Association Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19" by Dr Charles Shepherd.
    This wide ranging update reminds readers that long covid is not necessarily the same as ME, but research into each may help the other, and Dr Shepherd is therefore involved in advising on both, including a recent briefing to the government health department. Dr Shepherd comments on illness management for ME and long Covid , and the draft guidelines for both coming soon.
    Article here Thread here

    NICE guideline
    The draft guideline will be available on 10th November. Individuals and stakeholder organisations will be able to submit comments.
    #ME Action UK article :"6 Ways To Have Your Say In The NICE ME/CFS Guideline Consultation"
    #MEAction UK article here Thread here

    Trial by Error by David Tuller
    NICE's Upcoming Draft Guidance on ME/CFS

    David Tuller's guess on the outcome of the upcoming draft of the revised guidance for ME/CFS from National Institute for Health and Care Excellence (NICE). He believes GET will be discarded and that CBT will be recommended as supportive care.
    Article here Thread here
    _________________
     
  4. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - November 2020

    UK NICE ME/CFS guideline The draft guideline is due to be published on Tuesday 10th November. Stakeholder organisations, including Science for ME, will be invited to respond. The consultation will begin on 10 November 2020 and end on 22 December 2020, and the new publication date is expected to be 21 April 2021.
    Thread with link here
    _____________

    Week beginning 9th November 2020

    New draft NICE guideline for ME/CFS

    Quotes:
    "Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy."

    "Do not offer CBT as a cure for ME/CFS."

    "Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness."


    The draft NICE guideline for ME/CFS has been published for a 6 week consultation period. The guideline has been generally welcomed by patient organisations, with its removal of Graded Exercise Therapy and removal of directive CBT that aims to change illness beliefs. The guideline recommends activity management to stay within the energy envelope and avoid PEM. It includes sections on severe and very severe ME/CFS, and ME/CFS in children.

    There are still some points of disagreement which Science for ME members are discussing on the forum in preparation for a submission to the consultation. Other UK ME organisations are inviting people with ME to contribute to their responses too.
    Draft Guideline here

    NICE consultation page (including links to Evidence Reviews and Supporting Documentation and how to respond) here
    Statement from NICE here

    Professor Jonathan Edwards' and Dr Nina Muirhead's Expert Testimonies here
    Summary of the guideline by Michiel Tack here

    Responses
    Media, blogs and ME organisations have published initial responses to the draft guideline. The removal of GET and directive CBT have been welcomed by ME organisations. Media response is mixed with some quoting the welcome from patients, and some the protests and continuing support for GET from its leading proponents in a Science Media Centre press statement. Some examples are listed below:

    ME Association here MEActionUK here Invest in ME here
    Action for ME article here survey here

    Trial by Error by David Tuller here The Science Bit by Brian Hughes here
    Centre for Welfare Reform here Science Media Centre here

    The Guardian here The Times linked here The Telegraph here
    Steve Topple in The Canary here

    Medscape here British Medical Journal here and here The Pharmaceutical Journal here

    Thread with links to further discussion threads here
    ________

    More responses to the draft NICE ME/CFS guideline

    STAT "Proposed British guidelines reject useless chronic fatigue syndrome treatments"
    Excellent opinion piece by David Tuller and Steven Lubet. "Clinical guidelines developed by NICE are influential in medical practice around the world, including in the U.S. Its new draft on ME/CFS is a long-overdue and much-needed corrective to years of misguided and potentially harmful recommendations."
    Article here Thread here

    The Science Bit "No more Mr NICE Guy..."
    Brilliant summary by psychology professor Brian Hughes. "This is not just a turning point for people with ME, CFS, and related conditions — it is a high-profile exposure of exactly how, for years, entire subfields of the psychological sciences have been willing to overlook, if not embrace, shoddy standards."
    Article here Thread here

    Trial by Error by David Tuller "The Science Media Centre and UK's Coverage of New NICE Draft"
    A summary and analysis of the press coverage of the draft guidelines for ME/CFS, including from the SMC.
    Article here Thread here

    CBT Watch
    "CBT Is Not A Treatment Or Cure for ME/CFS" by Dr Mike Scott.
    'IAPT assesses the competence of its CFS clinicians, in part, by whether they explain the CBT model of MUS. They need an urgent rethink. ... 'Professor Jonathan Edwards submission to the NICE guideline Committee is a must read he highlights the importance of support over treatment.' ... 'His is a clarion call for basic humanity, being with people rather than believing that everything is fixable, walking the road with them. This should not be put under a CBT umbrella, to do so is a gross imperialism.'
    Article here Thread here

    The BMJ article reported last week, which can be read in full here, now has excellent rapid responses raising important points, including the lack of research funding, the outdated Cochrane reviews, and challenging the views of the CBT/GET supporters.
    Andrew Devereux-Cooke (@Andy) here, Robert Saunders (@Robert 1973) here and @Caroline Struthers here Thread here and here

    #MEAction UK “Loopholes Need Closing” – ME/CFS Draft Guideline Community Discussion was held online with 50 participants. You can sign up for the next discussion on Monday 23rd November at 8pm. These will contribute to the #MEAction UK’s response to NICE’s consultation on the draft guideline.
    Article here Thread here

    Norway Thorough article about the NICE guideline draft titled "Major changes in recommendation for the treatment of ME in the UK" on a news site about research.
    Article here Thread here
    ________________

    News in Brief - December 2020

    UK NICE ME/CFS guideline
    The following note has been added to the front page of the current guideline:
    Quote

    NICE is aware of concerns about graded exercise therapy (GET) and is updating the current recommendations. Please see the guideline in development page for information on our update (including draft recommendations on GET) which we expect to publish in April 2021. We are also developing guidance on the management of the long-term effects of COVID-19.

    This follows letters from Forward ME and its member organisations asking NICE to follow the Scottish Health Department's example by issuing a warning against GET/CBT treatments for ME; and from #MEAction UK who highlighted the harms from GET.
    NICE guideline here Forward ME website here Letter here
    #MEAction UK article here Thread here

    BJGP "Today's best practice will be rubbished tomorrow"
    Retired GP Charles Todd on why and how some treatments are still used even though they are outdated and even can be harmful to patients. Uses ME as an example: "The voice of patients has been crucial in challenging the usefulness of graded exercise therapy and CBT in chronic fatigue syndrome, resulting in these being dropped as recommended treatments by NICE".
    Article here Thread here

    Sheffield ME & Fibromyalgia Group
    Discussion with Dr. David Tuller on the NICE draft guideline for ME.
    Video conversation from 7th December. Duration 58 minutes.
    Video here Thread here

    New draft NICE guideline for ME/CFS

    BMJ Editorial "Updated NICE Guidelines on chronic fatigue syndrome"
    In this guest editorial professors Lynne Turner-Stokes and Derick T Wade oppose the removal of CBT/GET as treatment approaches for ME in the NICE draft guideline. BMJ editorial here
    The editorial has received excellent responses from forum members.
    Professor Emeritus Jonathan Edwards and expert witness in the guideline process calls the editorial "ill-informed, confused and unhelpful" and explains why here.
    Vice-chair of the Belgian ME/CFS Patient organisation 12ME, Michiel Tack, lists and responds to several problematic statements in the editorial here.
    Professor in psychology Brian Hughes has written an article about the BMJ editorial on his blog The Science Bit titled "Expert reaction to the BMJ editorial calling for the abandonment of standards" here.
    Thread here

    Physios for ME "View on NICE Guidelines"
    Physios for ME have submitted their response to NICE draft guidance for ME/CFS with key focus on physiotherapy management. Their review document can be read in full at their website, where they've also provided a summary of key impressions and recommendations.
    Response here Thread here

    NICE "Covid-19 rapid guideline: managing the long-term effects of Covid-19".
    This underwhelming guideline has spurred several reactions from the ME field. Covid-19 rapid guideline here.
    Dr. Charles Shepherd from the ME Association says to the Guardian: "... it is very disappointing to find that much of what we have learned about symptoms management in ME/CFS, especially the importance of having a period of post-infection convalescence followed by pacing and carefully keeping within an energy envelope, has not been acknowledged or incorporated into this guideline" here.
    Action for ME states on their website that they "are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid" and that "if those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms" here.
    Thread here

    UK NICE ME/CFS draft guideline

    Submissions to the consultation on the draft guideline

    The draft was published on 10th November for a consultation period that ended on 22nd December. ME organisations welcomed the removal of treatments that aim to improve or cure ME/CFS using fixed increment graded exercise or directive CBT. However, there remain significant areas of concern, particularly the continued inclusion of equally poorly evidenced physical activity programs and CBT for psychogical support. Other problems identified by S4ME members included clinical diagnostic criteria and redefinition of terms. After extensive feedback from S4ME members, a small team worked hard to turn the comments into a comprehensive S4ME submission.
    Other stakeholders have also consulted their members and made submissions.
    Draft NICE ME/CFS guideline here Thread here
    S4ME submission PDF here Thread with S4ME submission as posts here
    Physios for ME here #MEAction here Action for ME here Thread here

    BMJ Editorial

    BMJ recently published a controversial guest editorial by professors Lynne Turner-Stokes and Derick T. Wade opposing NICE's removal of CBT/GET as treatment approaches for ME in its guideline draft. The editorial has received several critical rapid responses (see last week's news brief). A new rapid response was submitted by Professor Brian Hughes, Professor Vincent Racaniello and Dr. David Tuller.
    Rapid response in BMJ here Thread here
    David Tuller has also written the article "BMJ Pushes Back Against New NICE Draft"
    Article here Thread here
    __________________
     
  5. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - January 2021

    ME/CFS Research Review by Simon McGrath
    "The expert testimony to NICE that took apart the case for CBT and graded exercise for ME/CFS". An article highlighting key points from Prof. Jonathan Edwards' expert testimony to the NICE guideline ME/CFS review committee.
    Article here Edwards' testimony here Thread here

    Journal of Health Psychology
    "The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials" by Vink & Vink-Niese
    In this editorial Mark Vink and Alexandra Vink-Niese reflect on the draft for the new NICE guideline on diagnosis and management of ME/CFS. They also criticize a recent editorial in the BMJ by Turner-Stokes and Wade that recommended studies into the efficacy of individualised multidisciplinary rehabilitation treatment in ME/CFS.
    Article here Thread here
    _____________

    News in Brief - February 2021

    American Journal of Nursing
    "UK Moves to Revise Guidelines for Treatment of Chronic Fatigue Syndrome" by Karen Roush.
    This short article reports the changes in the way ME/CFS has been viewed in the USA and UK, the flawed PACE trial, and rejection of CBT/GET, first by the CDC and now by NICE.
    Article here Thread here
    ___________________

    News in Brief - March 2021

    BMJ
    "Rapid Response: Re: Updated NICE guidance on chronic fatigue syndrome" by Busse et al.
    In a rapid Response on the BMJ website, Jason Busse and 10 colleagues criticize the NICE committee for ME/CFS of a “disastrous misapplication of GRADE methodology.” The list of authors includes Paul Garner, Signe Flottorp and Gordon Guyatt. Forum members Jonathan Edwards and Michiel Tack have each written a rapid response. Tack has also written a blog post that analyses the criticism by Busse and colleagues.
    Rapid responses here Blog here Thread here
    ________________

    News in Brief - April 2021

    The Science Bit Excellent lecture given by Prof. Brian Hughes last year titled "Off the PACE and not NICE: Challenges with Evidence in ME/CFS". The lecture was part of a conference organised by Hope 4 ME & Fibro Northern Ireland. Duration: 52 minutes.
    Lecture here Thread here

    UK NICE on tiredness/fatigue
    A parliamentary question has drawn attention to NICE 'Health topics' which are separate from, but refer to, its guidelines for specific diseases. The topic 'Tiredness/Fatigue in Adults' was updated in March 2020, refers to the 2007 CFS/ME guideline, and recommends CBT/GET.
    NICE link here Thread here
    _________________

    News in Brief - May 2021

    UK - NICE ME/CFS guideline The reason given to stakeholders for the 5 month delay in publication of the final version was given briefly as the large number of submissions. In reply a Freedom of Information request by Dom Salisbury, the additional explanation was given that some of the research papers had to be reassessed to ensure GRADE was applied correctly. Action for ME has also written to NICE to ask for more explanation.
    Action for ME here Thread with further links here
    ___________________

    News in Brief - June 2021

    Trial by Error by David Tuller Lowenstein's Guardian Opinion; Eliot Smith's Post-NICE View; Tack's Take on Blinding Study
    A recommendation and short summaries of these excellent articles.
    Article here Thread he

    Doctors with ME "Position statement: 2021 NICE guideline update" supports the removal of GET and CBT as treatments for ME/CFS and highlights the need for more research and better patient care, including for long Covid.
    Statement here Thread here

    Law and Health blog "Possible responses to the new NICE guideline for “ME/CFS” and "FOLLOW-UP to previous post on responses to the draft NICE guideline for “ME/CFS” + the need for a communications strategy rethink". In two linked articles, Valerie Eliot Smith discusses legal and media issues in preparation for the publication of the guideline.
    Articles here and here Thread posts here and here
    __________________

    News in Brief - July 2021

    Law and Health Blog "Beyond the NICE guideline: MEComms© and the case for a public inquiry". Valerie Eliot Smith makes further recommendations on a strategic communications rethink and beginning the move towards a public inquiry.
    Article here Thread here
    ___________________
     
  6. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - August 2021

    Week beginning 2nd August 2021

    UK - NICE ME/CFS Guideline


    Advance copies of the final version of the guideline were provided this week to stakeholders, including S4ME, who made submissions to the consultation on the draft. The document is embargoed until publication day on 18th August.

    In the final weeks before publication Dr Charles Shepherd was 'stood down' from the committee following a complaint alleging conflict of interest. He has decided not to appeal.
    MEA article here Thread here

    British Medical Journal "Exclusive: Four members of NICE’s guideline committee on ME/CFS stand down" by Ingrid Torjesen.
    This short news article reveals that three members of the guideline committee have resigned: Dr Gabrielle Murphy, Dr Michael Beadsworth and physiotherapist Joanne Bond-Kendall. The article is heavily biased, claiming the committee was swayed by a small number of patients and misused the GRADE system for assessing evidence.
    Article here Thread here
    Rapid responses include an excellent summary of the evidence by Michiel Tack.
    Responses here Thread here

    The Science Bit by Brian Hughes "Is it just me, or is the BMJ’s take on those NICE guideline committee resignations maybe a little biased?"
    With his customary wit and rigor, Professor Hughes takes apart the BMJ article. 'The fact that some “respected service providers” aren’t getting their own way is not a red flag warning us about a broken review process. It is a sign of progress. Data, not status. Evidence, not eminence.'
    Article here Thread here

    The Times "Experts quit over call to drop exercise as treatment for ME"
    Sean O´Neill has written an article about the three resignations from the NICE committee. He writes that the "clinical research advocating the use of exercise therapy and CBT had been subjected to intensive review and was judged to be of "low" or "very low" quality" and further that it is expected the new guidance will advise against the use of graded exercise as treatment for ME."
    Article here (paywalled) Thread here

    Trial By Error by David Tuller "Three CBT/GET Proponents Quit NICE ME/CFS Guidance Panel as Publication Date Nears"
    A summary of the NICE committee resignations and a critical walkthrough of the BMJ article about the news. "So far, it seems that the great majority of those on the committee agree with what is being published".
    Article here Thread here
    ____________

    Week beginning 9th August 2021

    UK - NICE ME/CFS Guideline

    The final version of the new guideline is due to be published this week on Wednesday 18th August. There is likely to be some media coverage, good and bad. A small group of S4ME members are working on summaries and responses which will be published on the forum once the guideline is published.

    Trial by Error by David Tuller "The Times Fact-Checks BMJ on NICE Committee; My Letter to BMJ's Fiona Godlee"
    On the background of the very different coverage from BMJ and The Times of the recent resignations from the NICE ME guideline committee, Tuller wrote to BMJ editor Dr. Fiona Godlee: "Wittingly or not, this BMJ article appears to be part of a public relations campaign being waged by those who have lost the scientific argument and now seek to cast doubt preemptively on the new ME/CFS guidance, as well as on the process for developing it"
    Article here Thread here

    The Science Bit by Professor Brian Hughes "Journalists covering ME/CFS: Don't ask about the new NICE guideline, ask about the old one"
    An important look at the history of the making of the 2007 NICE ME guideline, the poor evidence base for CBT/GET as treatment approaches, and the omission from the NICE evidence review of some serious caveats published in a 2001 review of the same evidence by the same review team.
    Article here Thread here

    UK - #MEAction Q&A "Chat To NICE ME/CFS Guideline Committee Members" with Adam Lowe, lay member and person with ME, and Caroline Kingdon, Research Nurse and Research Fellow working with the UK ME/CFS Biobank. Reserve a place to attend (limit 100), or watch live on Facebook. Tuesday 24th August at 5pm.
    Article here Thread here
    _______________

    Week beginning 16th August 2021

    UK - NICE ME/CFS Guideline

    NICE ME/CFS guideline publication paused

    With only hours to go before the planned publication of the final version of the long awaited guideline, NICE published a short statement on its website headed "NICE pauses publication of updated guideline on diagnosis and management of ME/CFS". A copy was emailed to stakeholders.
    " [...] NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all. [...] In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.
    NICE Statement here Thread here

    The ME Association article about this action includes links to media articles, and press releases by the MEA and Forward ME, including a press release that was intended to be embargoed until guideline publication.
    For more media coverage see the forum threads here and here
    MEA article here

    MEA "The NICE Guideline ME/CFS: Personal Observations Dr Charles Shepherd"
    'The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible.'
    Article here Thread here

    Trial by Error by David Tuller "NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines"
    Tuller goes through the recent developments at NICE and takes a look at UK media coverage of the events, where The Times is commended for its accurate reporting.
    Article here Thread here

    The Royal Colleges of Physicians and Paediatricians are the most outspoken objectors to the new guideline, with the removal of Graded Exercise Therapy appearing to be the main objection.
    Science Media Centre 'expert reaction' here

    Professor Jonathan Edwards has written an excellent letter to Andrew Goddard, president of the Royal College of Physicians in response to comments quoted in a Guardian article. Edwards says: 'Having considered all the complex arguments from both sides I have come to the clear conclusion that the patient community have been right to point out that CBT and GET are not validated treatments for ME/CFS and should not be used.'
    Thread with letter here

    #MEAction UK has created a petition asking NICE to publish the finalised ME/CFS guideline in its current form. In its first 3 days the petition has reached over 10,000 signatures.
    Petition here Thread here

    The Science Bit "The new NICE Guideline for ME/CFS: Ten Questions Answered"
    In an article published before above announcement, Professor Brian Hughes provides a great and informative overview of the most important aspects concerning the new NICE guidelines.
    Article here Thread here
    _________________
     
  7. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Week beginning 23rd August 2021

    UK - NICE ME/CFS Guideline


    NICE announces next steps for ME/CFS guideline
    On Friday 27th August stakeholders were sent an email announcing that they plan to hold a roundtable event: ".. to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation. The meeting, which will be held in September 2021, will have an independent chair and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee."
    Post with copy of the email here

    The Science Bit
    NICEXIT: Royal Colleges look to "take back control" of treatment standards
    Professor Brian Hughes on the role of Royal Colleges as lobbyists and why entities like NICE "exists precisely because frontline clinical judgement is an insufficient and unreliable method to determine what works and what doesn't".
    Article here Thread here

    STAT News "Delay of British chronic fatigue syndrome guidelines is a setback for people with long Covid" by David Tuller and Steven Lubet
    A detailed walkthrough of the history and context of the "paused" NICE guidelines. "As the suspended revised guidelines make clear, the psychosomatic school is on the losing side of the scientific argument. Just as the new ME/CFS guidelines could help foster appropriate care for people with long Covid, the emerging wave of biomedical research into that condition may provide answers as well for the long-neglected community of people with ME/CFS. In the meantime, it is essential that NICE publish its revised guideline with all deliberate speed."
    Article here Thread here
    The BMJ Lack of agreement forces NICE to pause publication of ME/CFS guidelines
    Excellent rapid response by Richard Vallée to a rather sub-par coverage from last week by the BMJ.
    Rapid response here Thread here

    BBC Radio Scotland Pause of the NICE Guideline for ME/CFS
    Interview with Helen McDade from ME Action Scotland. Duration 5 min.
    Interview here Thread here

    Valerie Eliot Smith
    "Update on the “paused” NICE guideline for “ME/CFS”: the case for individual/community publication."
    British barrister and long-term ME/CFS patient Valerie Eliot Smith wrote a blog post on the paused NICE guideline on ME/CFS. In it, Eliot Smith gives several arguments for "why community publication is now imperative".
    Blog here Thread here

    BBC Radio 4 Woman's Hour Dr. Nina Muirhead and Dr. Davis Strain discusses ME/CFS, Long Covid and the NICE guideline pause. Duration: 13 minutes.
    Interview here Thread here

    The ME Association Contact your MP about the NICE Guideline delay
    The ME Association encourages UK residents to get in touch with their MP regarding the guideline delay and has provided a template for people to use.
    Article here Thread here

    UnHerd "What we're not being told about ME"
    A thorough article by science editor Tom Chivers with great contribution from John Peters, Jonathan Edwards and Chris Ponting.
    Article here Thread here
    Chivers was afterwards contacted by two anonymous "experts in relevant fields" in support of the old NICE guideline and Chivers wrote an extra piece presenting their opinions here.

    Social Science Space Is the Sunk Cost Fallacy "First Doing Harm" in Chronic Fatigue Syndrome?
    Steven Lubet efficiently picks apart recent argumentation for keeping CBT/GET in the guideline as ME treatments.
    Article here Thread here

    Sunday Times "If we can't agree on ME, we've got no chance against long Covid"
    Dr. Phil Hammond calls for the Nice guidelines to be published. He is however a clinician at a children's clinic in Bath run by Prof. Crawley with GET/CBT as treatment approaches. He elaborated his opinions on social media; shared and discussed in the thread.
    Article here (paywalled) Thread here


    Hope 4 ME & Fibro Northern Ireland A series of 5 one hour webinars, facilitated by the HSC Clinical Education Centre '.. aims to explore the radical changes taking place within the new proposed NICE Guideline for ME/CFS and the important implications arising from the developing ‘Long Covid’ crises'. Weekly, starting on 15th September with 'The New NICE Guidelines on ME/CFS (2021): How the Paradigm has shifted'.
    Details here Thread here


    News in Brief - September 2021


    Week beginning 30th August 2021

    UK - NICE ME/CFS Guideline

    Guidelines
    NICE announces roundtable discussion for paused ME/CFS guideline
    Short article about the planned roundtable event by NICE "to better understand the issues raised during the guidelines consultation, in accordance with issues raised during the pre-publication period of the final guideline".
    Article here Thread here

    Science for ME
    letter to NICE.
    On 30th August the S4ME management committee sent an email urging NICE to publish the guideline without further delay and asking a series of questions including the purpose, potential outcomes and practical arrangements of the roundtable meeting. "The announcement first of the pause and then of the roundtable, and the lack of clear explanations of the purpose, agenda and next steps has caused considerable concern to our members who are relying on the new guideline to enable them to access appropriate compassionate care."
    Thread with the letter here

    Trial by Error by David Tuller
    A Letter Urging NICE to Publish ME/CFS Guideline Without Delay
    In this open letter to chief executive of NICE, Professor Gillian Leng, over 100 scientists, clinicians, academics and other experts call on NICE to publish the ME/CFS Guideline."Making changes at this late stage or cancelling publication altogether would represent a victory of vested professional interests over the rights of patients to receive care consistent with the available research."
    Letter here Thread here

    Physios for ME
    response to delayed NICE Guidelines
    "The last minute delay to publication of the NICE Guidelines has shocked everyone involved in the process, including Physios for ME. As stakeholders we had already taken part in the lengthy and in-depth consultation process and we find it difficult to understand what more can be discussed given the finalised guidelines were based on a robust analysis of the current evidence base."
    Response here Thread here

    The Guardian "Withdrawal of planned guidance on ME upsets patients" Science correspondent Natalie Grover outlines the stated reasons for the pause in publication of the guideline, and some of the history. Grover quotes Jonathan Edwards, Michael Sharpe and others, but over emphasises the psychological versus physical, and patients versus scientist arguments.
    Article here Thread here

    Valerie Eliot Smith Legal opinion and legal advice: the "paused" NICE guidelines for "ME/CFS"
    Barrister Valerie Eliot Smith's summary of the legal position surrounding the pause of the NICE guideline.
    Article here Thread here
     
  8. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Week beginning 6th September 2021

    NICE guideline
    Following NICE's announcement on 17th August that it was pausing publication of the guideline, it annouced a roundtable meeting would be held in mid September. This week it announced the meeting has been moved to October. Some patient organisations, including S4ME have been invited to send a representative to the meeting. NICE has not made public any further details.
    Thread discussion here (members only)
    _____________

    Week beginning 13th September 2021

    UK - NICE ME/CFS guideline

    There has been no further public announcement from NICE about the planned roundtable meeting in October, following the pause to publication of the guideline in August. Discussion of rumours and possible ramifications continues in the members only area of the forum. The S4ME committee has reported to members on its correspondence with NICE.
    Threads here and here (members only)

    Trial By Error by David Tuller
    "An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline". The letter has been sent again, now signed by 150+ experts and 100+ organizations and groups from UK and around the world, including Science for ME.
    Letter here Thread here (members only)
    __________________

    Week beginning 20th September 2021

    NICE ME/CFS guideline


    NICE "Update on the NICE ME/CFS guideline roundtable discussion"
    On 21st September NICE posted a short update. The roundtable meeting will be held on 18th October in London, chaired by Professor Dame Carol Black. Quote: Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: “We acknowledge that patients will be concerned about these further developments in what has been a long and difficult guideline process. We hope that by holding a roundtable discussion we can understand the issues raised by the professional bodies to inform NICE’s thinking on the next steps for publication of the guideline.”
    Announcement here Thread here

    The Medical Independent "Evidence-based medicine is not about consensus" by George Winter
    This short article on an Irish medical website questions NICE's action in pausing the ME/CFS guideline, and concludes: 'Well, the moment has arrived and the right action is to publish the new guidelines. If resignees and certain Royal colleges are not prepared to endorse “rigorous methodology and process” they must be ignored. What must not be ignored are those who continue to suffer daily from ME/CFS.'
    Article here Thread here
    __________________

    Week beginning 27th September 2021

    UK - NICE ME/CFS guideline

    Commentary on the pause and rountable meeting continues in the media and on social media, and discussion on the forum. Some are listed below:
    Dr Karl Morton (Oxford University ME researcher) statement here Thread here
    Invest in ME research correspondence with NICE here Thread here
    Norwegian ME Association letter to NICE (in English) here Thread here
    Daily Telegraph article (paywalled) “How I became a target for the ME militants” by Dr Michael Fitzpatrick (not a recommendation) here Thread here

    Legal action
    Solicitor Peter Todd has posted on Twitter:
    'I have today sent@NICEComms a letter before claim under the judicial review pre-action protocol regarding its decision of 17th August 2021 to pause publication of its updated guidelines on the diagnosis and management of ME/CFS.
    The letter before claims seeks agreement by NICE to revert to follow its procedures as set out in its manual no later than noon on Wednesday 6th October 2021, in default of which we intend to issue proceedings asking the High Court to intervene. Any roundtable must be held after publication of the guidelines.'
    Tweet here Thread here
    ________________

    News in Brief - October 2021

    NICE ME/CFS guideline pause
    Legal action
    We reported last week that solicitor Peter Todd, acting for an indvidual with ME/CFS, sent NICE a letter before claim under the judicial review pre-action protocol regarding its decision of 17th August 2021 to pause publication of the guideline.
    He has now posted on Twitter links to the letter he sent, and the reply from NICE's lawyers. He reports that the individual has been granted legal aid. '..now busy preparing the papers so I can file and serve proceedings in the High Court. Ian Wise QC being instructed to settle the statement of facts and grounds... Currently envisage serving proceedings by close on Friday 15th October'.
    Twitter link here Thread here (members only)

    UK inews "ME patient goes to court in row over exercise therapy for chronic fatigue syndrome" by Paul Gallagher reports on the legal developments.
    Article here Thread here
    _________________

    Week beginning 11th October 2021

    UK NICE ME/CFS guideline

    Note that threads linked in this section are in the Members only area of the forum.

    The roundtable meeting will take place on Monday 18th October.

    The agenda was sent to stakeholders with representatives attending the meeting on 12th October and links posted on 13th October on the NICE website. Documents include a list of areas of concern raised by stakeholders, and a list of organisations being represented at the meeting and NICE staff attending.
    The agenda includes a presentation on the aim of the guideline by Dr Peter Barry, chair of the ME/CFS guideline committee, and discussion of the issues raised in advance by stakeholders about GET, CBT and children and young people including safeguarding.
    NICE announcement with summary agenda here
    NICE documents page here Threads here and here

    UK Parliament - House of Lords
    On 12th October, Baroness Thornton asked the government health spokesman in relation to the pause: 'what assessment they have made of the ability of [NICE] to carry out its functions; and when they expect such guidance to be published'. Government responses were based on NICE's own statements, but the 10 minute debate enabled others to make good points.
    Transcript here Thread here

    Government briefing
    NICE's briefing to the Department of Health and Social Care, sent the day before the planned publication of the guideline, has been obtained under Freedom of Information and posted on the forum.
    Thread here

    Science for ME
    With agreement from NICE, correspondence between S4ME and NICE over the pause and roundtable has been shared with members.
    A small group of S4ME members took part in a pre-roundtable call with a representative of NICE in which they were invited to share their views on the guideline and the pause.
    Thread here (members only)

    #MEAction UK
    This update includes their representation at the roundtable. 'A small group of volunteers have taken part in a pre-meeting call with NICE. We objected in the strongest terms to the delay in the publication of the guideline and emphasised that the guideline must be published without any changes.'
    Article here Thread here

    #MEAction petition
    "Publish the NICE ME/CFS Guideline Now", with about 22,000 signatures, was handed to a senior staff members of NICE on 12th October.
    Tweet here Thread here

    The Times
    "Delays to ME guidelines 'are putting patients at risk'."
    Includes the roundtable and the MEAction petition.
    Article here Thread here
    inews "Chronic fatigue syndrome: delay in publishing new ME treatment guidelines ‘puts more people at risk’." Also refers to the MEAction petition.
    Article here Thread here
    Isle of Wight News "Delay on new guidelines for those with ME or Chronic Fatigue Syndrome causing serious harm say MEAction" by Adrianne Tillman of MEAction.
    Article here Thread here

    Legal action Solicitor Peter Todd, who is acting for a person with ME/CFS, has posted the following on Twitter: "As the roundtable is on Monday, I am deferring issuing the claim until after, so we can show that issues being raised were previously considered in the development stage, and it is an impermissible attempt at a second bite of the cherry."
    Tweet here Thread here

    Long Covid Physio and other national and international Long Covid groups have written an 'Open Letter to NICE Urging Immediate Publication of ME/CFS Guidelines'. The letter emphasise the lack of evidence for efficacy and evidence of harm from GET and CBT treatments for those with both ME and Long Covid with post exertional symptom exacerbation.
    Letter here Thread here

    Daily Mail "Chronic fatigue patients insist 'cruel' exercise therapy should be banished, while doctors claim it is one of the few things that works... so who is right?" by Ethan Ennals. Describes the current delay, roundtable meeting, and legal action, with several patients' stories of being made worse by GET, and quotes from Charles Shepherd, Jonathan Edwards and Sonya Chowdhury, with support for GET from Dr Alastair Miller of the Royal College of Physicians.
    Article here Thread here

    ME Association "Dr Ben Marsh calls on the Royal College of Paediatrics to explain why they caused a delay in NICE guideline publication"
    Dr Marsh is a paediatrician with ME/CFS. He has written to his professional body asking them to explain their support for the delay, and urging them to be more open with members about this decision. He asks the RCPCH to support publication and implementation of the guideline.
    Article with letter here Thread here
    _________________
     
    Andy, Mithriel and mango like this.
  9. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Week beginning 18th October 2021

    UK - NICE ME/CFS guideline

    Summary The roundtable meeting took place on Monday 18th October. Representatives of ME organisations report that the meeting went well.
    On 20th October, NICE announced 'NICE will publish the guideline following a meeting of its Guidance Executive next week.'

    Science for ME was represented at the roundtable by Professor Jonathan Edwards. Before the roundtable, Professor Edwards summarised his views on the guideline and the objections to it from some of the professional bodies. He concluded: 'I am not so much shocked as saddened that so many of my colleagues should advocate returning to a nineteenth century approach to medical evidence where clinical experience is considered more relevant than careful analysis of formal trials. NICE has produced an excellent guideline. It deserves everyone's support and should be published immediately.'
    Tweet here Thread here

    Broken Battery NICE pause ME/CFS guideline - 18th October
    Another excellent and informative video from Broken Battery. This time about the delayed NICE guideline with background information about why treatment approaches GET and CBT for ME have to stop. Includes quotes and comments from a number of MPs, experts and patients. Duration: 6.53 minutes.
    Video here Thread here

    Trial by Error by David Tuller - 18th October
    "Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline" This article includes quotes from representatives of S4ME, MEAction and the ME Association. All three comments suggest the meeting went well, with objections effectively answered, and patient experiences acknowledged.
    “There appeared to be an overwhelming majority view that the term GET should go. It was described as toxic. Similarly for ‘curative’ CBT…There was also complete agreement that GET should not continue under some other name. The inappropriateness of GET as defined in PACE was agreed by all.”
    Article here Thread here

    pharmaphorum
    "A test of NICE’s resolve: clinical guidelines for ME/CFS", 19th October.
    'The work of the UK’s HTA body, NICE, is often heatedly debated, and this time it’s for holding back a clinical guideline. Leela Barham looks into the controversy.'
    Article here Thread here

    #MEAction "The Treatment Of ME Has Been Dickensian" NICE's Roundtable On The ME/CFS Guideline - 19th October
    Janet Sylvester attended NICE's roundtable on behalf of #MEActionUK and provides a report from the meeting.
    Article here Thread here (members only)

    NICE announcement 20th October 2021
    "NICE announces next steps for publication of its guideline on ME/CFS"
    This brief announcement starts: 'NICE will publish the guideline following a meeting of its Guidance Executive next week.' It then outlines the topics covered in the roundtable meeting and concludes: 'We are now confident that the guideline can be effectively implemented and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication. Professor Gillian Leng, NICE chief executive'
    Announcement here Thread here

    Trial by Error by David Tuller 20th October
    "NICE Announces Upcoming Release of ME/CFS Guideline After Prolonged Hostage Drama"
    'The decision comes after a powerful cabal of medical practitioners held the process hostage for two months with unwarranted criticisms and bogus claims.'
    'It is a big deal to be able to say that NICE does not support GET and “curative” CBT, but of course the process of change in medical thinking and practice is a long-term project.'
    Article here Thread here

    Forward ME 22nd October.
    "Final statement following the NICE round table on ME" This short article summarises topics discussed and conclusions drawn at the round table, including the importance of post exertional malaise being included in the definition of ME/CFS, the lack of evidence for GET and for curative CBT, the importance of listening to patients' reports of harm, and concerns about safeguarding. 'Attendees highlighted potential challenges in resourcing and commissioning the services recommended in the new guidelines.'
    Article here Thread here

    Pulse "NICE to publish ME/CFS guideline after final meeting next week" by Caitlin Tilley. A summary of events largely based on the NICE announcements.
    Artlcle here Thread here


    Trial by Error by David Tuller PACE Authors Now Blame "Misunderstandings" for CBT/GET Criticisms
    About a recent paper from the PACE authors professors Sharpe, Chalder and White titled "Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis" based on its abstract. They claim that CBT/GET is "evidence-based" and that controversies of the treatments are due to misunderstandings. Tuller summarises: "In short, this article appears to be an effort to massage the past and salvage reputations."
    Article here Thread here
     
    Midnattsol, Mithriel and mango like this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Week beginning 18th October 2021

    UK - NICE ME/CFS guideline

    Summary The roundtable meeting took place on Monday 18th October. Representatives of ME organisations report that the meeting went well.
    On 20th October, NICE announced 'NICE will publish the guideline following a meeting of its Guidance Executive next week.'

    Science for ME was represented at the roundtable by Professor Jonathan Edwards. Before the roundtable, Professor Edwards summarised his views on the guideline and the objections to it from some of the professional bodies. He concluded: 'I am not so much shocked as saddened that so many of my colleagues should advocate returning to a nineteenth century approach to medical evidence where clinical experience is considered more relevant than careful analysis of formal trials. NICE has produced an excellent guideline. It deserves everyone's support and should be published immediately.'
    Tweet here Thread here

    Broken Battery NICE pause ME/CFS guideline - 18th October
    Another excellent and informative video from Broken Battery. This time about the delayed NICE guideline with background information about why treatment approaches GET and CBT for ME have to stop. Includes quotes and comments from a number of MPs, experts and patients. Duration: 6.53 minutes.
    Video here Thread here

    Trial by Error by David Tuller - 18th October
    "Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline" This article includes quotes from representatives of S4ME, MEAction and the ME Association. All three comments suggest the meeting went well, with objections effectively answered, and patient experiences acknowledged.
    “There appeared to be an overwhelming majority view that the term GET should go. It was described as toxic. Similarly for ‘curative’ CBT…There was also complete agreement that GET should not continue under some other name. The inappropriateness of GET as defined in PACE was agreed by all.”
    Article here Thread here

    pharmaphorum
    "A test of NICE’s resolve: clinical guidelines for ME/CFS", 19th October.
    'The work of the UK’s HTA body, NICE, is often heatedly debated, and this time it’s for holding back a clinical guideline. Leela Barham looks into the controversy.'
    Article here Thread here

    #MEAction "The Treatment Of ME Has Been Dickensian" NICE's Roundtable On The ME/CFS Guideline - 19th October
    Janet Sylvester attended NICE's roundtable on behalf of #MEActionUK and provides a report from the meeting.
    Article here Thread here (members only)

    NICE announcement 20th October 2021
    "NICE announces next steps for publication of its guideline on ME/CFS"
    This brief announcement starts: 'NICE will publish the guideline following a meeting of its Guidance Executive next week.' It then outlines the topics covered in the roundtable meeting and concludes: 'We are now confident that the guideline can be effectively implemented and we will discuss the input from the meeting at our Guidance Executive next week with a view to publication. Professor Gillian Leng, NICE chief executive'
    Announcement here Thread here

    Trial by Error by David Tuller 20th October
    "NICE Announces Upcoming Release of ME/CFS Guideline After Prolonged Hostage Drama"
    'The decision comes after a powerful cabal of medical practitioners held the process hostage for two months with unwarranted criticisms and bogus claims.'
    'It is a big deal to be able to say that NICE does not support GET and “curative” CBT, but of course the process of change in medical thinking and practice is a long-term project.'
    Article here Thread here

    Forward ME 22nd October.
    "Final statement following the NICE round table on ME" This short article summarises topics discussed and conclusions drawn at the round table, including the importance of post exertional malaise being included in the definition of ME/CFS, the lack of evidence for GET and for curative CBT, the importance of listening to patients' reports of harm, and concerns about safeguarding. 'Attendees highlighted potential challenges in resourcing and commissioning the services recommended in the new guidelines.'
    Article here Thread here

    Pulse "NICE to publish ME/CFS guideline after final meeting next week" by Caitlin Tilley. A summary of events largely based on the NICE announcements.
    Artlcle here Thread here
    ................
     
  11. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Week beginning 25th October 2021

    UK - NICE ME/CFS guideline published 29th October 2021


    NICE announced on Thursday 28th October that the guideline would be published the next day. Embargoed copies were sent to stakeholders just before the announcement. Thread here
    The guideline finally appeared at 1:08 am on Friday.

    NICE guideline [NG206]
    Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
    NICE guideline page here PDF version here
    Thread here

    NICE Pathways published at the same time: 'NICE Pathways bring together everything NICE says on a topic in an interactive flowchart'.
    Interactive version here PDF here Thread here

    NICE statement 'NICE ME/CFS guideline outlines steps for better diagnosis and management'
    Quotes from Paul Chrisp, director of the Centre for Guidelines at NICE, and the chair and vice chair of the guideline committee, Dr Peter Barry and Baroness Finlay.
    Statement here Thread here

    NICE press release starts by describing the roundtable as successful and confidence that the guideline can be implemented. Comments follow from Chrisp, Barry and Finlay outlining key aspects of the guideline.
    Thread with press release here

    Roundtable minutes held 18th, published 29th October. Lists all attendees by name, and outlines points raised in discussion. The summary includes thanks for 'a very helpful and productive discussion' and issues needing addressing for implementation including training, commissioning services and examples of 'good practice from the patient perspective'.
    Paul Chrisp said: 'There is more agreement than disagreement. Work to amplify areas of agreement and aid understanding through greater clarity or additional narrative. Consider a joint statement from the attendees.'
    Minutes here Thread here
    ________________

    Science for ME's guideline group prepared in advance a detailed section by section analysis of the changes from the November 2020 draft to the published guideline, with a commentary on each section of the published guideline. The threads, in the members only area of the forum, are open for discussion.
    Threads listed and linked here
    ________________

    Statements from ME organisations

    Science for ME Press statement 'New NICE guideline creates hope for change at last', including a quote from Professor Jonathan Edwards.
    Thread here
    ME Research UK tweeted its support for the guideline.
    Tweet here Thread here
    Action for ME 'NICE publish guideline'
    Article here Thread here
    Invest in ME Research 'NICE guidelines - taking us forward to 2007'
    Article here Thread here
    __________________

    Science Media Centre 'Expert reaction to updated NICE guideline on diagnosis and management of ME/CFS'
    Comments in support of the guideline from Caroline Kingdon, David Strain, Karl Morton, Chris Ponting and statistician Kevin McConway (a Trustee of the SMC). Comments criticising the guideline, in particular the removal of GET, from Trudie Chalder, Peter White and Alastair Miller. This was used as a source of quotes by many of the articles in the media.
    SMC document here Thread here

    In the media


    The Times 'ME patients won’t be told to do more exercise' by Katie Gibbons
    Article here Thread here
    The Guardian 'ME exercise therapy guidance scrapped by health watchdog Nice' by Sarah Marsh
    Article here Thread here
    BBC 'Chronic fatigue syndrome advice scraps exercise therapy'
    Article here Thread here
    The Independent 'Graded exercise therapy 'should no longer be recommended for people with ME' by Jane Kirby
    Article here Thread here
    inews 'Chronic fatigue syndrome: controversial exercise therapy removed from new treatment guidelines' by Paul Gallagher
    Article here Thread here
    The Telegraph 'Stop prescribing exercise to ME sufferers, doctors told' Then on Saturday 'Exercise does help people with ME, say doctors' both by Lizzie Roberts.
    Article here Thread here and post with second article here
    On The Wight 'Thousands living with chronic illness ME are listened to after years of fighting to be heard' by Adriane on behalf of MEAction
    Article here Thread here
    The National (Scotland)
    Article here Thread here
    Manchester World 'ME exercise therapy ditched over concerns it could be harmful for people with chronic fatigue syndrome' a good article by Andrew Nowell based on an interview with Adam Lowe who was a patient representative on the NICE committee.
    Article here Thread here
    Today UK news
    Article here Thread here
    York Press
    Article here Thread here
    LBC radio Eddie Mair discussing the new ME/CFS guideline on LBC with Paul Chrisp and some people with ME.
    Broken Battery recording here (18 minutes) Thread here

    Clinicians' publications

    Pulse '
    Final ME/CFS NICE guideline recommends ‘personalised care and support plan’' by Emma Wilkinson
    Article here Thread here
    Medscape 'NICE Publishes Delayed ME/CFS Guidance After Summer Controversy' by Tim Locke
    Article here Thread here
    GP online 'Reworked NICE advice on ME/CFS warns against 'one-size-fits-all' approach' by Nick Bostock
    Article here Thread here
    BMJ News 'ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE' by Ingrid Torjesen
    Article here Thread here
    Nursing Times "This severe, complex multisystem disease has long been misjudged by the healthcare profession" by Caroline Kingdon.
    Article here Thread here
    Physio update website 'Coalition including specialist ME physios welcomes NICE guideline's 'break from the past'.
    Article here Thread here
    _________________

    continued in post 2
     
    Midnattsol, Andy and mango like this.
  12. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    Week beginning 25th October 2021

    NICE guideline news continued


    Statements from clinicians' organisations

    BACME (British Association for CFS/ME), the professional association for clinicians who work in ME/CFS clinics. Press statement starts:
    'BACME welcomes the new NICE Guidance on ME/CFS in the hope that this will support continued progress in improving the quality of life of all people who have the complex illness ME/CFS.' The statement says many working in clinics have already moved away from GET. It concludes: 'BACME will use the new NICE guideline as a foundation on which to build further clinical guidance on the delivery of care to people with ME/CFS and work to ensure that the patient story is heard and embedded in the future of ME/CFS care.' See below item on BACME survey.
    Statement here Thread here

    Royal Colleges of Physicians, GP's, Psychiatrists, Physicians of Edinburgh, The Academy of Medical Royal Colleges, and the Faculties of Sport and Exercise Medicine and of Occupational Medicine have issued a joint statement.
    The statement opens: 'The published guideline contains some positive changes, but these do not go as far as we would have liked and understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health.' It expresses 'considerable disquiet' about 'the way the data and evidence have been assessed', and claims support from 'some patient groups' (unspecified) for these comments. The statement supports involvement of exercise medicine, CBT and rehabilitation specialists.
    This very concerning statement contradicts the reported agreement to support the guideline from these organisations at the roundtable meeting organised by NICE.
    Statement here Thread here

    BMJ The above statement is copied in BMJ under the heading 'NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders.'
    Article here Thread here
    Names of individual signatories to the statement are in the BMJ article, listed here
    (note that 4 signatories attended the roundtable).

    Physios for ME statement is supportive of the guideline, but expresses particular concern about who will provide and supervise training for Physios.
    'We feel that education for all physiotherapists needs to be improved regarding ME, in particular the ability to identify and manage post exertional malaise, so that all physiotherapy interventions can be adapted and made suitable for a person with ME.' The statement ends with thanks to the guideline committee and 'We also extend our respect to the ME patient community who provided their expertise to the consultation process despite the potential consequences for their own symptoms.'
    Statement here Thread here

    Royal College of Occupational Therapists have tweeted support for the guideline saying OT's have 'a key and unique role supporting people with ME/CFS both within specialist services and across all aspects of health and social care'.
    Tweets here Thread here
    _________________

    Commentary

    The Science Bit
    (posted before guideline publication) "New Treatment Guideline, Same Old Denialism" Professor Brian Hughes, in his straight talking style, describes the latest NICE guideline developments and a recent paper by some of the PACE authors still claiming CBT/GET work. 'The new NICE review was essentially an exposé of bad science. It lifted the rock on this branch of research and revealed the ugly truth of what wriggled underneath.'
    The Faculty Lounge "More Entrenched Obstruction by UK Psychiatrists" by Steve Lubet introduces and republishes Hughes' article.
    Articles here and here Thread here

    ME/CFS Skeptic 'A historic change for the ME/CFS community' by Michiel Tack
    Gives a brief summary of some of the history, and describes the guideline as a historical turning point away from the psychosomatic approach.
    Article here Thread here

    Professor Brian Hughes Twitter thread in response to the Royal Colleges' statement. In 12 tweets, Hughes takes apart the statement, showing up its weaknesses.
    Twitter thread here Thread here

    Trial by Error by David Tuller
    'NICE Liberates New ME/CFS Guideline After Two-Month Hijacking Nightmare'
    Tuller gives a succint history of key points in the story. 'On Thursday, the agency made known that it was planning to publish the document today—as it did. With that, NICE dealt a severe blow to the authority and credibility of the cabal of medical grandees who concocted and promoted the GET/CBT paradigm for this illness in the first place, starting three decades ago.'
    Article here Thread here

    Law and Health 'NICE publishes updated guideline for “ME/CFS”
    Valerie Eliot Smith describes the publication delay as 'an abject failure of due process by NICE'. The updated guideline is described as 'a small but welcome step in the right direction'. 'The time has come to call for an independent public inquiry into the history of the treatment of “ME/CFS” patients.'
    Article here Thread here
    _______________

    Freedom of Information Some requests were made via FOI for information about dates when certain decisions were made by NICE, and communications between clinicians' organisations and government bodies, and NICE that led to the pause. Responses were received after publication of the guideline.
    Threads here (members only) and here
    ________________

    NICE guideline related news

    UK NHS website has updated its pages on ME/CFS on the day the new guideline was published, however forum members have found problems with it.
    Website here Thread here

    BACME survey of current services provided in UK ME/CFS clinics.
    Results are revealing. Although results show that most do not offer GET by that name, 85% of those that offer physical management include 'grading up physical activity'.
    Survey here Thread here
    ____________________________________________
     
    Midnattsol, Andy and Mithriel like this.
  13. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - November 2021

    Week beginning 1st November 2021

    More comment on the NICE ME/CFS guideline

    The Science Bit by Professor Brian Hughes

    "Self-styled medical leaders defend "neurolinguistic processing" as legit treatment for ME/CFS"
    Prof. Hughes has gone through the Royal College's NICE submissions: "It is somewhat peculiar that a group of self-styled "medical leaders" should claim to champion science-based medicine, while simultaneously lobbying NICE to allow patients to be treated using such practices as the Lightning Process".
    Article here Thread here

    "The problem may well be that some of our treatments are too evidence based"
    An absurd quote by a psychology professor from a UK university gives another example of the crisis in the field of psychology. "Such a phrase suggests that the writer doesn’t even know what word evidence actually means — or that they know perfectly well, but are so committed to preserving their own status as to not care a damn"
    Article here Thread here

    Trial by Error by Dr. David Tuller
    Losers in NICE Guideline Fight Remain Defiant Despite Public Repudiation of Their Claims
    About the illogical pushback seen from some professionals after the publication of the NICE Guideline. "These medical “leaders” are jabbering in circles. They don’t like how NICE assessed the evidence, the evidence has nothing to do with what they’re offering anyway, and they have no evidence to support what they’re doing beyond their clinical impressions."
    Article here Thread here

    King's College London Is Still Hyping "Bespoke" CBT for CFS as "Recommended" in UK
    Dr Tuller provides examples of how GET and CBT are still being promoted as ME treatments at King's College London despite the NICE guideline now advising against them.
    Article here Thread here

    Doctors with ME NICE 2021: A Triumph of Science over Discrimination
    'Doctors with M.E. stands ready to work with partners and organisations to bring medical education up-to-date and assist in developing the right services for ME/CFS patients.' The statement is followed by a series of comments from some of the organisations honorary fellows and associates.
    Article here Thread here

    UK Chartered Society of Physiotherapy NICE publishes new guidance about ME/CFS
    Natalie Beswetherick, director of practice and development at the CSP is quoted: '... I expect all those physiotherapists working with people who have ME/CFS to read the document, reflect on what this means for their practice and make any changes to their practice in light of the revised guidelines.'
    Article here Thread here

    UK APCP The Association of Paediatric Chartered Physiotherapists
    'NICE ME/CFS guideline outlines steps for better diagnosis and management'
    'The guideline states that people with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patient's preferences and priorities. It includes specific guidance on the challenging area of physical activity and graded exercise therapy.'
    Article here Thread here

    Norway
    Professors Ola D. Saugstad and Rolf Rønning wrote an excellent opinion piece about the NICE guideline and the way forward titled "ME-patients were right!".
    Opinion piece here
    Patient advocate Nina E. Steinkopf wrote an opinion piece urging the Minister of Health to take action in light of the new NICE guideline.
    Opinion piece here
    The research news site forskning.no interviewed leader of the National Competence Center for CFS/ME who says the NICE guideline won't change recommendations of GET/CBT for Norwegian patients.
    Article here
    Thread with google translation of all three articles here

    New Zealand A link to the new NICE guideline has been added to the resources for clinicians in a regional health authority.
    Thread here

    Other articles about the NICE guideline
    Telegraph
    New guidelines for chronic fatigue treatment are a fudge
    Dr Michael Fitzpatrick refers to ME/CFS as chronic fatigue, supports graded exercise therapy, and describes its removal as a fudge supported by 'activists'.
    Article here (paywalled) Thread here
    TouchImmunology Nina Muirhead: Updated NICE ME/CFS Guidance
    Article here Thread here
    WiredGov NICE ME/CFS guideline outlines steps for better diagnosis and management
    Article here Thread here
    Hospital Healthcare Europe ME/CFS guidance from NICE seeks to improve awareness and understanding of condition.
    Article here Thread here
    _____________

    Week beginning 8th November 2021

    UK Parliament: NICE guideline
    MP Carol Monaghan and the All party parliamentary group on ME have written to Professor Gillian Leng, Chief Executive of NICE. They welcomed the publication of the guideline, and raised the concern that it be implemented in full, and the need for clinician education about ME.
    Thread with link to Facebook copy of the letter here
    The next meeting of the APPG is at 2pm on 24 November 2021. Speakers from NICE and AfME will talk about implementation of the guideline.
    MEA article here Thread here

    UK
    "Tell your doctor that GET is gone". #MEAction has provided a template email for people with ME/CFS to send to their GP with the news of the new guideline, key points in it, and links to more information.
    Article with template here Thread here

    Ireland
    “Irish ME patients hope HSE will follow UK and scrap exercise therapy guidance” This article, published in Journal.ie, reports how Irish ME/CFS patients hope that the Health Service Executive (HSE) will follow the NICE guideline in no longer recommending graded exercise therapy. The HSE responded that assessments tailored to individual patient needs can be carried out by GPs, with specialized input where required.
    Article here Thread here

    UK Long Covid guideline
    The latest version of this guideline has been published, along with stakeholder submissions to the draft, including from S4ME. The guideline advises management based on self management, multidisciplinary teams, goal setting and rehabilitation, without supporting evidence. It does not mention ME/CFS or link to the new ME/CFS guideline.
    Guideline here Thread here
    __________________

    Week beginning 15th November 2021

    Denmark
    Good article in a Danish medical newspaper about the new NICE guidelines. The Danish ME Association urges health authorities in Denmark to keep up with the developments, stop GET as treatment approach and stop classifying ME as a "functional disorder".
    Article here (in Danish) Thread here

    UK Science Media Centre Until recently, the SMC has given prominence to psychosocial views of ME/CFS. Recent comments published by the SMC on the new NICE guideline gave more prominence to commentators supporting the removal of the CBT/GET approach. Two article published this week discuss this welcome change:
    Trial By Error: "Is Something Shifting at the Science Media Centre?"
    David Tuller reviews some of the history of media and SMC commentary and the recent changes.

    Science, Behaviour, Homeostasis: "The Science Media Centre and ME/CFS: Best Scientific Evidence or Biased Opinion?" by David Marks
    'Here I examine the SMC’s reports on MECFS-related publications relating to the PACE trial, from 2011 when the trial was published until 2017 when the Journal of Health Psychology published a Special Issue critiquing the trial. What the SMC describes as ‘best scientific evidence’ consists of biased opinions from people with strong vested interests.'
    SMC here Tuller article here Marks article here Thread here

    NHS England
    web pages on ME/CFS
    This material was updated on 29th October to coincide with publication of the new NICE ME/CFS guideline. Forum members have expressed serious concern that the material is misleading and does not provide an accurate picture of the new guideline.
    NHS England website here Thread here

    Trial by Error by David Tuller Some National Health Service Branches Fail to Respond to New NICE Guidelines for ME/CFS
    Tuller provides several examples of how the NHS is not yet fully up to date everywhere with the revised NICE guidelines, and that the treatment approaches GET and CBT are still being offered.
    Article here Thread here

    UK Royal College of Paediatrics and Child Health (RCPCH)
    "ME/CFS - Member briefing on new NICE guideline"
    This short briefing expresses some concerns about the guideline, highlighting the sections on safeguarding, and on physical activity.
    'The NICE definition of GET describes increasing activity in fixed increments which is not how it is commonly implemented in current clinical practice by paediatricians. Instead, paediatricians use an individualised approach to gradually improve physical abilities.'
    Article here Thread here

    Journal of General Internal Medicine
    “Evidence-Based Care for People with Chronic Fatigue Syndrome and Myalgic Encephalomyelitis” by Sharpe et al.
    In this perspective, the primary authors of the PACE trial recommend that ME/CFS patients should be offered graded exercise therapy or cognitive behavior therapy. They argue that “the controversy about them arises from misunderstandings about their nature and delivery.”
    Article here Thread here

    Trial by Error
    New Paper From PACE Authors Repeats Bogus Arguments and Defenses
    David Tuller points out that this paper, in not referring to the new NICE guideline, was 'outdated the moment it was published'. After going through some of the problems with the article, Tuller concludes: 'All in all, another shameful performance by a cabal of investigators very aware that they have lost their dominance in this domain and that their reputations are in rapid decline.'
    Article here Thread here
    ________________

    Week beginning 22nd November 2021

    NICE guideline interview
    David Tuller interviews Adam Lowe about the new NICE ME/CFS guideline and his part in it as a lay member of the guideline committee. Adam gives a fascinating account of his experience of being part of the whole decision making process, including how the research was analysed in detail, and insights into how and why recommendations were made. Duration: 1hour 20 minutes.
    Thread with link to video here

    Norway Professors Saugstad and Rønning recently wrote an opinion piece about the revised NICE guideline and how this represents a big victory for patients. 24 health professionals wrote an opinion piece objecting to the professors and guideline and arguing for keeping CBT/GET as treatments. This week the 24 professionals received replies from Saugstad/Rønning, the Norwegian ME Association and patient advocate Jørn Tore Haugen in defence of the guideline.
    Replies here, here and here Thread here

    The Science Bit "Psychogenic ME/CFS: Turning the Nostalgia Up to Eleven"
    Professor Brian Hughes describes a recent paper by PACE authors in favour of CBT/GET as ME treatments as farcical.
    Article here Thread here

    Coming events

    #MEAction UK
    "Chat To NICE ME/CFS Guideline Committee Members"
    Community Q&A with Caroline Kingdon and Adam Lowe - two of NICE’s ME/CFS guideline committee members - at 5pm on Tuesday 30th November. There are 100 places to sign up, and others will be able to follow on Facebook. A recording will be made available afterwards.
    Article here Thread here
    ________________
     
    Midnattsol, Andy and Mithriel like this.
  14. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - December 2021

    NICE ME/CFS guideline

    UK ME organisations
    have produced template letters for people with ME/CFS to send to their GP about the new NICE ME/CFS guideline.
    Action for ME article here Thread with links here

    Sweden
    Sten Helmfrid, Kerstin Heiling and Sture Eriksson wrote an opinion piece about the NICE guideline for the Journal of the Swedish Medical Association. They ask for the guideline to "be a turning point for how patients with ME/CFS are treated and how the illness is portrayed in the public sphere". The opinion piece has been translated into English and is available at Researchgate.
    Article here (English) and here (Swedish) Thread here

    Science Norway published an opinion piece by an LP coach who criticised the NICE guideline and urged the Norwegian health authorities to ignore it. The opinion piece received several reactions:
    Benedikte Monrad-Krohn and Øistein Jansen replied with their own opinion piece in Science Norway. They conclude that Norway should follow NICE and update its own guideline.
    Article here Thread here

    Professor Brian Hughes has also responded to the opinion piece that criticises the NICE guideline with an excellent 8 post Twitter thread.
    'It is frankly embarrassing to see such pseudoscientific conspiratorialism presented as 'science opinion''
    Twitter here Thread here
    On the other hand, Professor Paul Garner has written a nonsensical tweet.
    Thread with link to tweet here

    David Tuller wrote an article titled: Lightning Process Star Complains About NICE; Struthers Nudges Cochrane to Keep Up
    Tuller's guess is that the coach is upset because the NICE guideline specifically bars the method she's selling. He also writes about a letter that Caroline Struthers recently sent to Cochrane's Deputy Editor-in-Chief concerning a collaborative agreement between NICE and Cochrane. In the letter she is "seeking reassurance that NICE will manage the risk posed by potentially delegating important decisions about the quality of evidence influencing NICE's recommendations to an outside, self-regulated organisation". See also item above.
    Article here Thread here
    _____

    Week beginning 6th December 2021

    NICE ME/CFS guidelines
    Freedom of Information
    "Text-message lobbying of senior NICE staff by individuals at NHS England and the Royal College of Psychiatrists in days before ME/CFS guideline pause" by Dom Salisbury
    This blog article discusses material made public through an FOI request to NICE, and another to NHS England. It reveals attempts made by a member of the Royal College of Psychiatrists, and by the mental health team at NHS England, to persuade NICE not to publish the Evidence reviews and/or the Guideline.
    Article here Thread here (members only)

    The Canary "An FOI reveals a rot at the heart of parts of the medical establishment" by Steve Topple, covers the same FOI material, '... they paint a picture of attempted subversion of NICE procedures and potentially even corruption.'
    Article here Thread here (members only)

    Denmark

    A Danish journal about neurology has published three articles about the NICE guidelines. Psychologist Peter La Cour is supportive of the new guidelines, Professor Per Fink is not. The articles mention the protests from the Royal College of Physicians.
    Thread with links and quotes here

    MEAction UK video Q&A with two members of the NICE ME/CFS guideline committee, lay member Adam Lowe and nurse Caroline Kingdon held on 30th November, is now available on YouTube. Duration 1 hour 11 minutes.
    Video here Thread here
    ________________

    Week beginning 13th December 2021

    Dialogues for a Neglected Illness

    This project funded by the Wellcome Foundation has produced a series of excellent videos on different aspects of ME/CFS. The films have been made by Natalie Boulton and Josh Biggs. The final two films have been released this week:

    Revised prologue A dangerous model abandoned as NICE seeks to reform care for ME:CFS patients in 2021
    This 11 minute video features researchers, clinicians and patients explaining why GET and CBT are ineffective and harmful. Relevant sections are quoted from the new NICE guideline. The video is dedicated to the memory of Graham McPhee.
    Video here Thread here

    Norway - responses to the UK NICE ME/CFS guideline
    The NICE guideline from UK has spurred ongoing debates about ME in several newspapers.

    Georg Espolin Johnson MD says in Aftenposten that the guideline is not representing a final answer as there's been debate about it in the UK. He wants further exploration of how psychology is a contributing factor of development and perpetuation of ME.
    Dr. Johnson's opinion piece here Thread here

    Professor Rolf Rønning wrote in Dagsavisen about how and why ME patients became an underclass in healthcare.
    Prof. Rønning's opinion piece here Thread here

    An open letter in Aftenposten signed by 235 ME patients replies to criticism against the NICE guideline made in a previous opinion piece. The letter says the guideline gives them hope and that they don't find it right that a minority who are against the guideline should be above biomedical research, international health authorities and the majority of patients.
    Open letter here Thread here

    Professor emeritus and psychiatrist Einar Kringlen claimed in Klassekampen that there are no scientific evidence for ME and predicts that it will disappear within ten years. He received a reply from professor Petter C. Borchgrevink saying Kringlen is displaying contempt for the patient group. Another reply came from professors Ola Didrik Saugstad and Rolf Rønning calling Kringlen's ignorance catastrophic.
    Prof. Kringlen's opinion piece here Prof. Borchgrevink's opinion piece here Professors Saugstad/Rønning's opinion piece here Thread here

    UK Employer News "Invisible disabilities: Supporting your colleagues with ME/CFS" by Lisa Baker
    Highlights the new NICE guideline and the need for employers to recognise the needs of employees with ME/CFS and those with Long Covid.
    Article here Thread here
    _______________

    Week beginning 20th December 2021

    UK Forward ME
    has sent a review of 2021 to its members.
    Key points include the publication of the NICE guideline, collaboration between UK ME charities, and the need for medical education.
    Review here Thread here

    The Canary "ME: the year in review – sickness, lies, and subversion"
    Steve Topple gives his perspective on the year for people with ME in the UK, with the ups and downs of the NICE guideline and media responses, and the arrival of Long Covid. He links to a series of tweets responding to his invitation to share positive moments.
    Article here Thread here
    ________________

    News in Brief - January 2022

    UK ME Association
    Free Booklet: An ME Association Summary of the New NICE Guideline for ME/CFS
    'The booklet features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible. It has been written by Dr Charles Shepherd, Hon Medical Adviser to the ME Association and Member of the NICE guideline committee.'
    Article here Booklet (28 pages pdf) here Thread here

    Doctors with ME
    "Putting it into Practice: What NICE ME/CFS means for GPs" An excellent brief guide for GP's on what ME/CFS is and diagnosing and caring for patients with ME. It raises important issues such as safeguarding and the care needs of people with severe ME/CFS. A helpful guide to send to GP's.
    Article here Thread here
    "NICE ME/CFS 2021: Q&A summary for GPs"
    A 4 page PDF summary of key points from the NICE guideline.
    PDF link here
    _______________

    Week beginning 24th January 2022

    NICE ME/CFS guideline
    Documents have been obtained under Freedom of Information from the time period between the pause and publication. The Royal College of Psychiatrists continued to argue about the evidence review, claiming evidence of efficacy for GET and CBT was wrongly discounted, including the PACE trial. A representative from the Royal College of Physicians also argued about evidence, and wrote in favour of a role for rehabilitation specialists.
    Documents linked here Thread here (members only)

    Learning modules
    In a UK ME Association article, "New CPD learning module from MIMS Learning on the new NICE guideline", Dr Shepherd says: 'Overall, this CPD module about the new NICE Guideline is well worth recommending to your GP – in addition to the excellent Study PRN CPD module that Dr Nina Muirhead has already produced about ME/CFS.'
    Article here Thread here
    ________________
     
    Midnattsol, Andy and Mithriel like this.
  15. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - February 2022

    #MEAction Scotland report that they are a stakeholder in the consultation over implementation of the NICE ME/CFS guideline in Scotland.
    Article here Thread here

    Sweden Article from December 2021 in a medical journal about the new NICE guidelines from UK informing that CBT and GET as treatment approaches to ME are now gone. The guideline is welcomed by vice chairman of the Swedish patient organisation dr. Sture Eriksson who says this represents a change in the perception of the disease.
    Article here Thread here

    Week beginning 7th February 2022

    The Lancet

    "New NICE guideline on chronic fatigue syndrome: more ideology than science?" by Flottorp et al.
    In this paywalled article several well known proponents of the CBT/GET approach to treatment for ME/CFS suggest the new NICE guideline removal of these treatments was unduly influenced by ideology, preconceptions and conflicts of interest on the guideline committee. 'The new guideline presents strengthened evidence, but a major shift in interpretation. How could this happen?'.
    Article here Thread here

    Denmark Opinion piece by dr. Jesper Mehlsen and psychologist Peter La Cour in the newspaper Kristeligt Dagblad. They criticise Denmark's approach to ME as a functional disorder, the health authorities for not following up the 2019 Parliament notion on using WHO's classification of ME and urge Denmark to keep up with the UK NICE guidelines.
    Article here (paywalled) Thread here

    UK Daily Express published an article under the heading "Chronic fatigue syndrome: Study finds the most effective treatment to reduce symptoms" which reported a CBT study with claims of effectiveness. Following a complaint from Forward ME the article was significantly amended with quotes from the new NICE guideline under the new heading"Chronic fatigue syndrome: Important guideline change for CBT as 'treatment' for condition".
    Article here Thread here
    _________________

    Week beginning 14th February 2022

    Opinion piece about the NICE ME/CFS guideline and responses

    The Lancet

    "New NICE guideline on chronic fatigue syndrome: more ideology than science?" by Flottorp, Brurberg, Fink, Knoop and Wyller.
    As we reported last week, the authors, all well known supporters of the biopsychosocial model of ME/CFS and CBT/GET treatments, argued that the guideline committee was biased in its review of evidence. Below are some responses:

    Trial by Error by David Tuller
    "The Lancet Published Whine de Coeur from Impassioned GET/CBT Defenders"
    About the recent Lancet comment from Flottorp et al accusing the NICE ME guideline for relying more on ideology than science. "They are on the wrong side of a crumbling paradigm, and they sense it, and in this tendentious document they come across as dismayed, confused, and even scared."
    Article here Thread here

    ME/CFS skeptic
    A new blog post by ME/CFS Skeptic provides and excellent detailed dissection of the arguments made by Flottorp and colleagues in their critique of the new NICE guidance in the Lancet.
    Article here Thread here

    Professor Jonathan Edwards, expert witness on clinical trial methodology to the NICE guideline committee, has written to the authors and included Professor Garner who has supported the article on social media. He points out that he has no vested interests, unlike the authors. 'What has shocked me most is how pervasive the lack of rigour is in the Cochrane circuit for non-pharmacological treatment, and also to see physician colleagues buy in to poor evidence for political reasons.'
    Letter here

    UK Forward ME are asking for feedback on whether ME/CFS clinics' communications have been updated to reflect the new NICE guideline.
    Thread here
    ________________

    News in Brief - March 2022

    UK BJGP Life "Reflections on NICE, CFS/ME, and the Lightning Process" by GP and LP practitioner Anna Chellamuthu. This opinion piece is a highly biased promotion of LP which denigrates patients and the NICE guideline committee.
    Professor Jonathan Edwards has written to the editor, Dr Lawson.
    'The piece refers to NICE by insinuation without evidence. [...] The inuendo directed at patients is totally unprofessional. Material like this should not be permitted any more than anti-vaxx propaganda for Covid. The Lightning Process involves brainwashing and, as I indicted in my witness statement for NICE, use of such methods is unethical in the absence of meaningful evidence of efficacy.'
    Thread with letter here
    Following feedback to the journal, the editor decided to unpublish the article.
    Statement here Thread here
    Trial by Error by David Tuller "British GP Journals Retracts "Opinion" About Lightning Process Written By LP Practitioner"
    Tuller provides a write-up of the whole story and would like to know who made the decision to publish the piece in the first place.
    Article here Thread here

    Prof. Brian Hughes will give a talk about the NICE ME guidelines on a webinar organised by the Norwegian ME Association. The webinar takes place 10th March at 14.00 (local time). The webinar will be recorded and available to all afterwards.
    Registration here Thread here
    _____________

    Week beginning 14th March 2022

    UK NICE Guideline
    implementation statement. Representatives of stakeholders who attended the roundtable last October before publication of the guideline have been invited to comment on an implementation statement intended to advise health service commissioners.
    Thread with statement here

    NICE ME/CFS Guideline webinar Professor Brian Hughes gave a talk to the Norwegian ME Association: "The New NICE Guideline for ME/CFS(2021): Following the Science"
    In this excellent talk, Hughes explains the process used by NICE to review the evidence on ME/CFS treatments, emphasising that this was not influenced by patients, as claimed by some opponents. He describes the key points on diagnosis and treatment, the paradigm shift in understanding of ME/CFS as a physical, not a psychological disease, and why some clinicians will always oppose changes in practice, even when they are in line with the latest scientific evidence.
    Video here (1 hour) Thread here
    _____________

    News in Brief - April 2022

    UK - NHS Scotland has updated its webite aimed at patients, NHS Inform, to reflect the new NICE ME/CFS guideline. It provides a simplified version of NICE advice and directs patients to Action for ME for further information.
    Website here Thread here

    HealthSense
    “Why deny patients with chronic fatigue syndrome treatments that can help?”
    Peter White reiterates his arguments in defending the findings of the PACE trial on which he was the lead researcher. His article responds to a previous piece by Caroline Struthers published in the HealthWatch newsletter titled “It is not only drugs and devices that can harm.”
    Article here Thread here
    ______________

    Week beginning 11th April 2022

    UK - Observer letters
    PACE authors Profs. White, Chalder and Sharpe respond to last week's Guardian article about Long Covid by Ravi Veriah Jacques which criticised the PACE trial. They repeat their discredited claims about effectiveness of CBT/GET and their criticisms of NICE, and say CBT/GET should be researched for Long Covid.
    Letter here Thread here

    Trial By Error by David Tuller
    PACE Team Stages a Comeback Tour

    PACE authors have tried to defend their trial in responses to articles by Caroline Struthers and Ravi Veria Jacques and they seem to attempt to extend their GET/CBT approach to Long Covid. Tuller also highlights that they didn't adhere to the Declaration of Helsinki when choosing not to disclose to the PACE trial participants their conflicts of interests by having financial ties to insurance companies.
    Article here Thread here

    UK - Guidelines in Practice A website for UK health professionals
    "Key learning points: revised NICE guidance on ME/CFS" by Dr David Strain.
    Dr Strain summarises key points from the new NICE guideline, covering 'the key features of ME/CFS, assessment strategies to exclude alternative diagnoses, and a pragmatic approach to supporting patients with ME/CFS'.
    Article here Thread here
    ______________


     
  16. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - May 2022

    Week beginning 9th May 2022

    UK news


    NICE "NICE outlines steps needed to put ME/CFS guideline into practice"
    'The NICE implementation statement highlights the areas that will have the most need to be considered by local commissioners and providers to comply with the recommendations in the guideline.' These include ensuring the availability of experts in secondary care to provide guidance to primary care, training, early paediatric diagnosis, and the need to review funding and staffing.
    Article here Implementation statement here Thread here

    Parliament
    "Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Announcements - Statement made on 12 May 2022"
    Secretary of State for Health and Social Care, Sajid Javid, has made a written statement. 'Today, on World ME Day, I have two announcements to make to show that the Government is committed to better care and support for people living with ME/CFS and their families... Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life.'
    The statement commits to working on the Priority Setting Partnership recommendations: 'To support these research priorities, I will co-chair a roundtable with my Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next.'
    'Secondly, I am announcing the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate.' this refers to the new NICE guideline, the PSP and the work of the All Party Parliamentary Group on ME/CFS.
    Statement here Thread here

    The All Party Parliamentary Group on ME have announced a meeting on the 25th May 2022 to launch their first report titled “Rethinking ME”.
    “At this reception, we will reflect on the progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. We will hear directly from people ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.” Carol Monaghan MP, Member of Parliament for Glasgow North West (copied from the ME Association)
    Action for ME is preparing a template letter to send to MP's
    ME Association here Action for ME here Thread here

    The Times "Sajid Javid promises radical action for patients debilitated by ME" by Sean O’Neill.
    'Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”.'
    Article here (paywalled) Thread here

    The Times
    "My daughter couldn’t be saved but there’s hope for other ME patients" by Sean O'Neill
    A frank and heartbreaking account of Sean O'Neill's daughter Maeve's suffering from very severe ME/CFS and her death last year at the age of 27. O'Neill contrasts the state of the art treatment and care he has had for his leukemia with the lack of care Maeve suffered. 'I believe Maeve (like many people with this illness) suffered discrimination because there is a deeply embedded prejudice about the disease which permeates all levels of medicine and beyond.' The article ends: 'For those still living with ME, the hope held out by yesterday’s announcement will make life more bearable. For my beautiful girl, it is too late.'
    Article here Thread here

    The Times
    "Relative’s suffering triggered Sajid Javid’s ME crusade"
    'Sajid Javid’s radical new approach to the debilitating condition myalgic encephalomyelitis was shaped by his experience with a family member.
    The health secretary told The Times yesterday that a close relative suffered with ME, which affects at least 250,000 people in the UK and for which there is no diagnostic test, universally effective treatments or cure.'
    Article here Thread here

    Independent "I was raised by a mother who was battling ME – it’s not just ‘being tired’, it’s a devastating, life-defining disease
    Sajid Javid has finally committed to tackling the ‘incredibly disabling condition’ in a moment that campaigners and victims have been fighting to reach for decades" by Ellie Fry.
    Article here Thread here

    Daily Mail "Hope for 250,000 ME patients as Sajid Javid promises radical new approach to tackling the 'incredibly disabling condition'"
    Reports on Javid's statement but stated incorrectly that the NICE guideline remains unpublished and GET/CBT are still recommended. This was later amended after complaints.
    Article here Thread here
    _________________

    Week beginning 16th May 2022

    UK Parliament
    The All Party Parliamentary Group on ME will launch their report "Rethinking ME" at an event on 25th May. It will be published on the group's new website.
    Website here Thread here

    British Medical Journal
    "NICE sets out steps NHS must take to implement ME/CFS guidelines" by Ingrid Torjesen
    See last week's news for the NICE statement. This article outlines the reasons and implications of NICE making such a statement, including the major changes needed to services for people with ME/CFS.
    Article here MEA copy with comment by Dr Shepherd here Thread here

    UK The Times following the Health Secretary's statement in support of better research and care for ME/CFS and 3 articles in the Times we reported last week, The Times has published letters in support from Action for ME's Sonya Chowdhury and Dr Strain, and from Prof Stephen Holgate.
    Thread with letters here and here

    UK Science Media Centre director Fiona Fox has now published a book: "Beyond the Hype - The Inside Story of Media's Biggest Controversies".
    There is a chapter on ME/CFS. It claims balance, but the SMC's past record on ME/CFS makes that unlikely. She will be talking about it at the Hay Festival on 5th June.
    Thread here
    __________________

    Week beginning 23rd May 2022

    UK Parliament
    The All Party Parliamentary Group on ME chaired by MP Carol Monaghan launched its report 'Rethinking ME' at an event addressed by the Secretary of State for Health and Social Care, Sajid Javid.
    The 37 page report gives an excellent overview of the problems with past misunderstanding and mistreatment of ME, and recommendations under 5 headings including biomedical research, medical care, children and young people, financial support, and Long Covid.
    APPG's are interest groups with no power to influence government action unless ministers choose to do so. Sajid Javid pledged to lead a cross-government initiative on ME.
    Website with link to report here Thread here

    The Times
    "Sajid Javid rethinking ME after young relative’s battles" by Sean O'Neill. Describes some of Javid's relative's experience that he spoke about at the event, and his committment to action on the findings of the report.
    Article here Thread here

    British Medical Journal
    "Health secretary pledges more ME/CFS research as he reveals that relative has condition" by Ingrid Torjesen
    Article here Thread her

    UK BBC radio 4
    Woman's Hour had an excellent section on ME/CFS with guest Sean O'Neill who spoke movingly about his daughter Maeve who died last year from very severe ME, and the lack of appropriate care. This followed his articles in the Times recently. Charles Shepherd also spoke well about the NICE guideline, and government recognition and support for implemenation of its recommendations.
    Radio link here ME Association transcript here Thread here

    Denmark "Facts and myths about chronic fatigue syndrome" by Per Fink et al
    An article in a Danish medical journal criticising the NICE guidelines for ME/CFS which no longer recommends CBT/GET as treatments and also emphasises the importance of pacing. The authors claim this is based on the NICE committee's interpretation of evidence, not evidence itself, and that there's no need to update the clinical approach in Denmark in line with the new guidelines from UK.
    Article here (paywalled) Thread here
    ________________
     
    Wits_End, Midnattsol, Andy and 2 others like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - June 2022

    Week beginning 6th June 2022

    UK Parliament
    The Health Secretary Sajid Javid held a roundtable meeting with researchers, representatives of patients and patient organisations, and of research funding bodies. Those present report a useful meeting.
    Tweet from Javid here Thread here

    Week beginning 20th June 2022

    UK Parliament
    Following the roundtable meeting with Health Secretary Sajid Javid reported 2 weeks ago, several working groups have been set up. The group on education and attitudes is to be chaired by Prof Stephen Holgate and Dr Nina Muirhead.
    Thread here
    Doctors with ME have produced an article and video "Normalised Medical Rule Breaking and the UK DHSC ME/CFS Review - Replacing Working Group Glass Ceilings with Enforceable Minimal Standards" suggesting that, because of resistance from some clinicians, the working groups need to be able to mandate change. Forum discussion raises concerns that the material overcomplicates a useful message.
    Article and video here Thread here

    Week beginning 27th June 2022

    UK NHS
    ME/CFS services for children and young people. Documents produced by some paediatric services still recommend CBT and GET as treatments for ME/CFS, in contradiction to the 2021 NICE guideline. The ME Association has written to some to express concern, including one in East Kent that advises continuing exercise regardless of symptoms. As a result the East Kent online document has been removed. The MEA has also written to the Norfolk hospitals which still recommend GET.
    MEA articles here and here Thread here and here

    Journal of General Internal Medicine
    “Bias in Exercise Trials for ME/CFS: the Importance of Objective Outcomes and Long-term Follow-up”. In this excellent letter, Michiel Tack criticises a paper by Sharpe and colleagues that claimed graded exercise therapy and cognitive behavioural therapy are effective treatments for ME/CFS. Robert Saunders has already written a letter which hasn’t been published yet by the journal. Sharpe and colleagues have written a brief response to the letters by Tack and Saunders.
    Letter Tack here Response Sharpe et al. here Thread here
    _________________

    News in Brief - July 2022

    Week beginning 4th July 2022

    Scotland
    "ME/CFS NICE guideline: stakeholder review" by the Scottish Government Healthcare Quality and Improvement Directorate
    'An independently-produced stakeholder review of the NICE guideline on ME/CFS. It makes recommendations regarding the implementation of the guideline in Scotland, and identifying and addressing priorities for service improvement in ME/CFS care.'
    Document here Thread here

    Week beginning 11th July 2022

    UK Forward ME
    "Report from a meeting with the Royal College of GPs on implementing the NICE Guideline on ME/CFS" Dr Charles Shepherd.
    Background information was supplied to the RCGP before the meeting between 6 representatives of Forward ME and 3 from the RCGP. They discussed education of GP's and the role of primary care.
    Report here Thread here

    UK ME Association has been writing to health providers in England whose web based information about ME/CFS is still based on the old guidelines. Some have responded by taking down the outdated material.
    Thread about Norfolk here

    Week beginning 18th July 2022

    UK ME Association
    "MEA writes to Torbay and South Devon ME/CFS service about their ‘Fact Sheet’ on ME/CFS"
    Dr Charles Shepherd continues his excellent work sending letters to NHS regional ME/CFS services about their outdated online resources.
    MEA article with letter here Thread here

    Week beginning 25th July 2022

    Trial by Error by David Tuller

    "A Conversation with Patient Advocate Adam "Beyonce Holes" Lowe"
    Advocate and ME/CFS patient Adam Lowe who was part of the committee that developed the new NICE guidelines talks about recent developments as the ongoing implementation of the new guidelines, the new report from the All-Party Parliamentary Group on ME and former health minister Javid's call for increased effort for this disease.
    Video here Thread here

    UK ME Association is providing updates on responses to letters from Dr Shepherd asking local NHS providers to remove outdated online materials.
    Thread with list here
    ________________

    News in Brief - August 2022

    Week beginning 1st August 2022

    Acta Physiologica

    “Chronic fatigue syndrome: an old public health issue highlighted by the COVID-19 pandemic” by Bonk & Keddar
    This editorial provides a brief overview of ME/CFS and mentions that “the new guideline published by NICE in October 2021 has parted ways with the earlier, potentially harmful treatment recommendations.”
    Article here Thread here

    Kings College London

    “A systematic literature review of randomized controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome” Ingman et al.
    The research team of Trudie Chalder has written another review paper claiming that graded exercise therapy (GET) and cognitive behavior therapy (CBT) are effective treatments for ME/CFS.
    Article here Thread here

    Week beginning 8th August 2022

    Trial by Error by David Tuller
    King's College London Still Promoting Discredited CBT/GET/Deconditioning Paradigm
    Repost of a letter from the ME Association's medical advisor, Dr. Charles Shepherd, to King's College London which still hasn't updated its site in line with the new NICE guidelines.
    Article here Thread here

    Week beginning 15th August 2022

    UK Government
    Department of Health and Social Care "INFORMATION FOR STAKEHOLDERS - Development of a Delivery Plan on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)".
    This document outlines the structure that has been set up of working groups and the purpose of each group. The 3 groups, overseen by The Delivery Plan Task & Finish Group, are The Research Working Group, The Attitudes and Education Working Group and The Living with ME/CFS Working Group. They plan to publish a draft delivery plan later this year and a final plan next year.
    Thread with copy of the document here.
    ______________
     
    Last edited: Jul 15, 2023
  18. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - September 2022

    Week beginning 29th August 2022

    UK Forward ME
    steering group minutes 10th August. Topic covered include Charles Shepherd's work on monitoring NICE guideline compliance; Department of Health and Social Care working groups; Millions Missing; and Decode ME.
    Minutes here Thread here

    Week beginning 5th September 2022

    Trial by Error by David Tuller
    "Another CBT/GET Marketing Document Masquerading as Research from Professor Chalder"
    A critical look at a review titled "A systematic review of randomised controlled trials evaluating prognosis following treatment for adults with chronic fatigue syndrome" by Prof. Chalder and colleagues. In short deemed as "crap".
    Article here Thread here

    "My letter to Psych Medicine About Professor Chalder's Flawed Systematic Review"
    Tuller follows up the review (see item above) further in a letter to its journal's online portal, a pre-print server and directly to two co-editors of the journal: "this systematic review comes across more as a marketing or public relations document than as a legitimate work of science by disinterested investigators. It is troubling that Psychological Medicine’s editors and peer reviewers did not notice or care about these substantive deficiencies."
    Letter here Thread here

    Week beginning 19th September 2022

    UK Government "INFORMATION FOR STAKEHOLDERS Work underway to support the development of a Delivery Plan on ME/CFS"
    A brief summary of 'the meetings held to date to develop proposed content for a draft cross-government Delivery Plan on ME/CFS'. Groups focusing on research, attitudes and education, and living with ME/CFS have discussed terms of reference and set up subgroups and workshops.
    Thread with link to document here

    Week beginning 26th September 2022

    Preprint
    "Commentary: Graded Exercise Therapy and Cognitive Behaviour Therapy Do Not Improve Employment Outcomes in ME/CFS" by Tuller and Vink.
    Starts with Wessely's 1989 article that proposed his CFS model of faulty beliefs and deconditioning, and the linking of welfare benefits to undergoing behavioural interventions. Sharpe is quoted claiming social factors including welfare benefits prevent recovery. 'Both State and private insurers pay people to remain ill.'
    Tuller and Vink analyse research data from PACE and other studies to show that CBT and GET do not lead to increased employment. They conclude: 'In consequence, they should no longer be recommended to ME/CFS patients as a strategy for achieving occupational rehabilitation and related outcomes.'
    Trial by Error article here Preprint here Thread here
    ___________________

    News in Brief - October 2022

    Week beginning 3rd October 2022

    Webinar
    The Norwegian ME Association is organizing a webinar by Prof. Luis Nacul who was on the UK NICE ME/CFS guideline committee titled: “Current evidence on diagnosis and management of ME/CFS according to NICE and EUROMENE: Are all guidelines the same?”
    The webinar is free and takes place October 13th at 14.00.
    Registration here Thread here

    Week beginning 10th October 2022

    UK Doctors with ME "Rights and Obligations in ME/CFS: Overcoming normalised disregard for standards" In an article addressing the current delivery plan discussions set up by former Health secretary Sajid Javid, DwME give examples of failure of care, and say: 'We propose a simple solution which explicitly removes the perception of optionality in meeting basic standards in the care and service of ME/CFS patients. It takes the form of official guidance called “Rights and Obligations in ME/CFS”'
    Article here Thread here
    ________________

    News in Brief - November 2022

    Week beginning 31st October 2022

    Intelligencer
    Has Long COVID Always Existed? by Jeff Wise
    A long article about some of the history of ME. The article is unfortunately in line with the psychosomatic approach to the disease, and suggests among other things that recent developments such as CBT/GET no longer being recommended as treatment approaches isn't based on scientific grounds. David Tuller, whose work on PACE is misrepresented in the article, has explained to the author on Twitter.
    Article here Tuller on Twitter here Thread here

    Preprints

    "What Primary Care Practitioners Need to Know about the New NICE Guideline for ME/CFS in Adults" by Kingdon, Lowe, Shepherd and Nacul.
    This article summarises the key points in the new guideline with explanations of the roles of GP's and specialist teams and the importance of ongoing review and support.
    Article here Thread here

    Week beginning 7th November 2022

    New York Magazine - Intelligencer
    : 'Has Long Covid Always Existed' by Jeff Wise. Following the publication of this problematic article (see last week's news), there have been further attempts on Twitter by ME/CFS experts to explain to the author the factual inaccuracies in his article. These include doctors Todd Davenport, David Putrino and David Tuller. #MEAction have written to the author and editors to explain why the article is so wrong.
    Thread here

    Trial By Error by David Tuller "More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid"
    Dr Tuller highlights problems with the Jeff Wise article, links to critical commentary by ME/CFS experts on Twitter and elsewhere, and explains why Jeff Wise's main source, Professor Michael Sharpe, is 'an unreliable narrator'.
    Article here Thread here

    Solve ME "Solve M.E. & Community Partners Denounce Misleading New York Magazine Article" by Lucinda Bateman, MD, Mady Hornig, MA, MD and Emily Taylor, MA.
    Three experts whose comments were misrepresented in the article have written of their concern at this article that is so out of step with current research and collaboration with patients. They conclude: 'We have contacted Wise and NYM and have called for a retraction of the article. We will continue to further educate, advance the science, and advocate for these underserved and misrepresented people in our communities.'
    Article here Thread here

    Week beginning 14th November 2022

    David Tuller
    Trial by Error
    More on that New York Magazine Piece Pushing Psychogenic View of ME/CFS and Long Covid
    A summary of critical reactions to a recent article claiming long Covid and ME/CFS are psychosomatic as well as a breakdown of the article's misrepresentation of Tuller's work on the PACE trial.
    Article here Thread here

    Week beginning 21st November 2022

    UK ME Association
    Vital information about ME/CFS sent to all GPs in the UK, Channel Islands and Isle of Man!
    'In early October, the ME Association sent a major mailing to all GP surgeries. In total 8,121 packages were sent, and each included a covering letter and 5 items of literature that we hope will keep frontline healthcare services informed about recent developments.' Materials include MEA guides on the ME/CFS NICE guideline, and on Long Covid.
    MEA article here Thread here
    _________________

    News in Brief - December 2022

    Week beginning 5th December 2022

    UK BACME
    (British Association of Clinicians in ME/CFS) Primary Care Guide to ME/CFS. This 24 page document mostly follows the 2021 NICE guideline, and describes primary care as the expected provider of diagnosis, management advice, ongoing care and annual reviews.
    BACME guide here Thread here

    UK Forward ME Minutes for the November meeting include reports from MEAction on Millions Missing events in London and Scotland; MEA on their work on monitoring implementation of the NICE guideline and their distribution of materials about ME/CFS to GP's. Also updates on the DHSC groups and DecodeME. Discussion included the future role of ForwardME.
    Minutes here Thread here

    Week beginning 19th December 2022

    UK NICE ME/CFS guideline

    Implementation of the guideline


    UK Government Department of Health and Social Care
    Update on the working groups delivery plan. This 3 page document outlines the work undertaken by each of the groups so far, including on research, clinician education and care. The delivery plan is expected to be published early in 2023.
    The ME Association has published a copy of the document and invites feedback which they will collate and pass on in the New Year.
    Thread with document | MEA article

    BACME (The British Association of Clinicians in ME/CFS)
    ME/CFS Care and Support Plan Guidance
    This document includes guidance and templates for Care and Support plans to enable better self management and communication with clinicians and carers.
    Thread with document

    Opposition to the guideline

    Snippets have been revealed on social media from an upcoming publication by Peter White, leader of the PACE trial, and 40 other like minded clinicians, titled:
    "Eight major errors in the review process and interpretation of the evidence in the NICE guideline for [CFS] and [ME]." The quoted sections focus on criticism of the NICE guideline's evidence review, definition of ME/CFS, and removal of GET.
    Thread

    Week beginning 26th December 2022

    Trial by Error by David Tuller
    Usual Suspects Say NICE Made Eight Errors, Nonsense, Says Committee Member Adam Lowe
    David Tuller and NICE Committee member Adam Lowe provide a great "prebuttal" of the eight critiques of the ME/CFS NICE Guidelines in an upcoming publication by Professor Peter White et al.
    Interview | Thread

    Archives of Epidemiology & Public Health Research
    The Rise and Fall of the Psychosomatic Approach to MUS, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome - David Marks
    A long and detailed study of the history of the development, and views of the major proponents, of the 'biopsychosocial model' as applied to ME/CFS. The article includes extensive analysis of the history, the involvement of funders, flaws in the research and the harm caused to patients. The article concludes:
    "Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right. Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties. At the very least, an apology should be offered to the thousands of ME/ CFS and MUS patients and their families who have been detrimentally affected by this 34-year exercise in failed science."
    Article | Thread
     
    Last edited: Jul 15, 2023
    Andy likes this.
  19. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - January 2023

    Week beginning 2nd January 2023

    Germany

    The German Society for General and Family Medicine (DEGAM) published its new guideline on "Fatigue". The chapter on ME/CFS follows and explicitly recommends the NICE and EUROMENE guidelines, as well as the CDC's recommendations.
    Report | Thread

    UK NHS England
    appointments of concern to people with ME/CFS.
    Professor Sir Simon Wessely has been appointed as a Director of NHS England.
    Dr Adrian Whittington is the new Clinical Lead for Psychological Professions at NHS England and Health Education England. He is also the clinical lead for IAPT (Improving Access to Psychological Therapies) and is quoted on CBT Watch as saying ‘we need to support a psychological approach as the norm for major health conditions. We know that these developments can support people to adjust and manage long term conditions more effectively, reducing unwarranted medical consultations’.
    Wessely article | Thread | CBT Watch | Thread

    Week beginning 9th January 2023

    The Science Bit
    Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS
    Psychology professor Brian Hughes responds to the snippets released on social media of a article expected to be published criticising the 2021 NICE ME/CFS guideline, with 43 authors including the PACE trial leaders.
    "given the logical incoherence of the arguments mounted by these authors, and the consequent vapidity of their claim that NICE made eight (or even any) “major errors”, by rights this paper should never be accepted for publication in any journal that values its academic reputation."
    Article | Thread

    Week beginning 16th January 2023

    Healthcare
    What Primary Care Practitioners Need to Know about the New NICE Guideline for ME/CFS in Adults - Kingdon et al
    This paper, written by 4 members of the guideline committee and previously seen as a preprint, has now been published. It provides a clear summary of key points from the 2021 NICE guideline as a useful guide for clinicians.
    Article | Thread

    News in Brief - February 2023

    Week beginning 30th January 2023

    UK - Scotland There was a debate in the Scottish parliament on the "Scottish Government Commissioned Review of ME Services and Future Action". The review from July 2022 raises the need for GP education and recommends setting up pilot services. MSP Sue Webber introduced the debate and she and others told constituents' stories. The minister who responded reported on plans and progress towards medical education and implementation of the NICE guideline. Some members of #MEAction Scotland attended.
    Link to debate | Thread

    Advances in Bioengineering and Biomedical Science Research

    Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue
    Syndrome - D. Marks
    Health psychologist David Marks provides an overview of reviews that have amassed treatment harms to ME/CFS patients.
    Article here Thread here

    Week beginning 6th February 2023

    NICE guideline summary
    A useful 4 page document summarising key elements from the 2021 ME/CFS NICE guideline, provided to accompany the free StudyPRN CPD module by Dr Nina Muirhead.
    Document | CPD module | Thread

    Northern Ireland Hope for ME and Fibro NI.
    12th May ‘Delivering Together’ New NICE Guidelines for ME/CFS
    "New NICE Guideline for ME/CFS was formally endorsed for NI on 19/1/22. We explore the radical changes, introduced for safe and adequate care."
    A 3 hour session for professionals and legislators at the Parliament building.
    Booking | Thread
    ____________


    News in Brief - March 2023

    Week beginning 27th February 2023

    UK Parliament
    The AGM of the ME/CFS All Party Parliamentary Group will be on 21st March. "... the AGM will include a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts". There will also be a discussion of support for those with severe ME.
    Notice | Thread

    Scotland The Scottish Good Practice Statement on ME-CFS.
    A partially updated version was published by the Scottish Government on 28th February, to include some of the recommendations from the 2021 NICE guideline. However it still includes outdated recommendations from the 2010 version as well as updates, leading to contradictions.
    Document | Thread

    Week beginning 6th March 2023

    UK BACME
    (British Association of Clinicians in ME/CFS) holds a database of NHS specialist ME/CFS services. They have launched their 2023 National Services Survey looking at all aspects of service provision. It was "developed with support from the DHSC delivery plan team and their data analysts and we have also sought feedback from several of the large ME/CFS patient charities to help further our collaborative working" and "will be shared with the DHSC and the All Party Parliamentary Group for ME".
    Thread

    Scottish Legal blog David J Black: Cherchez la shrink
    About Simon Wessely's role in the dominance of the psychosomatic view of ME/CFS, and his influence on research and treatment in the UK through a range of influential positions, including his recent appointment to the board of NHS England.
    Article | Thread

    Week beginning 13th March 2023

    IOS Press
    Graded exercise therapy and cognitive behavior therapy do not improve employment outcomes in ME/CFS - Tuller & Vink
    In this commentary, David Tuller and Mark Vink conclude that “GET and CBT–have already been tested sufficiently to reach a conclusive assessment that they do not lead overall to meaningful improvements in work status.”
    Article here Thread here
    ___________________

    News in Brief - April 2023

    Week beginning 10th April 2023

    UK APPG All-Party Parliamentary Group on M.E. Annual General Meeting is on Wednesday 10 May at 2pm. It will include a one year-on review of the implementation of the NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation responded to by 106 ICB’s and NHS Trusts.
    The MEA has provided a template letter to invite your MP to attend.
    MEA article | Thread

    Week beginning 24th April 2023

    Europe This year's conference of the European Association of Psychosomatic Medicine in June has a session entitled "CFS/ME: Controversy and communication following the 2022 UK NICE guidelines". Speakers include well known critics of the guideline, Per Fink and Michael Sharpe, Lightning Process promoter Live Landmark, and a talk "Debate and misinformation in the press and on social media - can we do anything about it?" [note: the ME/CFS NICE guideline was published in 2021]
    Conference program | Thread
    ___________________
     
    Last edited: Jul 16, 2023
    rvallee likes this.
  20. Trish

    Trish Moderator Staff Member

    Messages:
    52,176
    Location:
    UK
    News in Brief - May 2023

    Week beginning 1st May 2023

    Long Covid Advocacy The Wessely Files
    Part Two - The Wessely Wizard of Oz
    The second in a series of articles about Professor Sir Simon Wessely. See March news for our item on part 1. This article focuses on ways Wessely has accrued power for himself and his views, including appointment to powerful positions in the British medical and political establishment and influence on the media, and the detrimental impact this has on people with ME/CFS and Long Covid.
    Article | Thread

    UK APPG All-Party Parliamentary Group on M.E. Annual General Meeting is on Wednesday 10 May at 2pm. It will include a one year-on review of the implementation of the NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation responded to by 106 ICB’s and NHS Trusts.
    The MEA has provided a template letter to invite your MP to attend.
    MEA article | Thread

    Week beginning 8th May 2023

    UK - ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services.
    "The ME Association is very pleased to announce that a £90,000 research grant has been made for a 12-month study that will enable Professor Sarah Tyson (Manchester), Dr Mike Horton (Leeds), and Dr Peter Gladwell (Bristol), to apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services."
    Article | Thread

    Fatigue: Biomedicine, Health & Behavior
    Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with myalgic encephalomyelitis/chronic fatigue syndrome - Jones et al.
    The authors argue that measures used in many NHS ME/CFS services capture patients’ experiences only moderately well. There are activities that patients value that are not captured by these measures.
    Article | Thread

    Week beginning 15th May 2023

    Scotland
    ME/CFS Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022
    "This report analyses survey responses from ten NHS Health Boards in Scotland to understand delivery of ME/CFS services, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development."
    Report | Thread

    A new consensus
    ME/CFS skeptic analyses the new treatment evidence reviews and guidelines on ME/CFS that have been published over the past 5 years. They form a new consensus, but appear to be a diplomatic consensus based on expert opinion rather than a rigorous assessment of the current evidence.
    Article | Thread
    ___________________

    News in Brief - June 2023

    Week beginning 29th May 2023

    UK Action for ME FOI Report reveals shocking lack of specialist care
    The report is titled: "Patchy, Misunderstood and Overlooked - Implementation of the NICE Guideline [NG206] on [ME/CFS] in England - Freedom of Information Findings Report"
    A survey of English Health trusts and Integrated Care Boards reveals that much of England has no specialist ME/CFS service, and, when provided, only a minority is NICE compliant. Many organisations asked either didn't respond, or said it was not their responsibility.
    Article | Report | Thread
    The Times Thousands of ME patients ‘failed by shockingly poor NHS care’
    "National treatment guidelines published two years ago are still not widely implemented, says charity." The article also describes the experience of Karen Gordon who has very severe ME/CFS.
    Sonya Chowdhury, head of AfME was also interviewed on Times Radio.
    Article | Thread

    Video: Professor Brian Hughes at a Hope 4 ME & Fibro NI conference.
    "The title of my lecture was Getting it Right: Addressing Myths about the 2021 NICE Guideline for ME/CFS. I outlined eight pieces of misinformation regarding the new guideline (and about ME/CFS more generally) that are currently being pushed from certain quarters." Duration 34 minutes.
    Blog | Video | Thread

    Week beginning 5th June 2023

    American Psychiatric Association Emeritus Professor Michael Sharpe, giving his lecture on receipt of an award, repeats his unfounded and long held belief that ME/CFS is caused by "a “vicious circle” of fatigue, fear of fatigue, avoidance of activity, disability, and physiological changes leading to more fatigue.", and his incorrect claim that CBT is an effective treatment.
    Article | Thread

    Week beginning 26th June 2023

    TCW Money's the motive for calling ME a myth
    A second article on ME by Sophie Palmer. This time on "the arguments of those who believe that vested interests have sought to retain the idea of ME as a psychological disorder" with main emphasis on UK and the influence of Professor Simon Wessely.
    Article l Thread
    __________________

    News in Brief - July 2023

    Week beginning 10th July 2023

    UK 2021 NICE ME/CFS Guideline - Commentary

    BMJ Journal of Neurology, Neurosurgery and Psychiatry

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis - White et al. (51 authors including Chalder, Sharpe, Wessely, Fink, Knoop, Wyller)
    The authors make 8 arguments to support their conclusion that "... the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability."
    Article | Thread | Prior thread on the prereleased 8 points

    BMJ
    News ME/CFS: Researchers question credibility of NICE guidance - Elisabeth Mahase
    "Guidance from [NICE] on [ME/CFS] “deviated from usual scientific standards” and could cause harm, a group of researchers have claimed. More than 50 international specialists analysed NICE’s 2021 guidance and questioned the evidence..."
    "NICE has vehemently rejected the study’s conclusions, telling The BMJ that it stands by the recommendations outlined in the guidelines."
    Article | Thread
    BMJ Rapid Response People with ME/CFS welcome the recommendations in the NICE guideline - Dr Charles Shepherd
    Reports on his experience on the NICE committee: "They concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and acknowledged that people with ME/CFS have consistently reported that CBT was ineffective and that GET made their condition worse - some ending up in wheelchairs as a result of receiving harmful advice on activity management."
    Rapid Response | Thread
    Dr Shepherd on Facebook: "NB: The first part of my letter, which was concentrating on the conflicts of interest by some of the clinicians and researchers who authored this paper, has not been published."
    Thread

    Press statement

    Kings College London
    Researchers produce systematic critique of 2021 NICE guideline on CFS and ME
    "A new analysis of the 2021 revision of NICE guideline for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) has outlined eight shortcomings in the review process and its interpretation of evidence."
    This press statement from the employer of Trudie Chalder and Simon Wessely lists the 8 "anomalies" and provides quotes from Chalder and Garner.
    Article | Thread

    Commentary

    The Science Bit
    The cries for help are getting louder. And that’s a good sign
    Psychology professor Brian Hughes summarises his previous article that demonstrated the logical fallacies in the authors' 8 arguments. He also highlights the long list of conflicts of interest of the authors. He concludes: "The JNNP article is little more than a self-serving letter to a friendly editor, infused with special pleading and groupthink. It has no standing other than as a work of academic contrarianship. It is a cry for help. Please, nobody help them."
    Article | Previous article | Thread

    MEAction UK publish a copy of their letter sent to the Guardian raising problems with the article. "The guideline is a real improvement on the previous version and the removal of Graded Exercise Therapy as a recommended treatment was greeted with relief."
    MEAction UK have also submitted a Rapid response to the Journal JNNP and posted a copy on their website. They explain several key mistakes in the White et al article, including on diagnostic criteria, the use of GRADE in the evidence review, and the claims about fixed increments for graded exercise. "If the treatment was delivered in a different way in practice it would indicate that the GET as researched wasn’t effective in clinical settings."
    Article with letter to the Guardian | Article with Rapid response to JNNP | Thread

    World ME Alliance NICE guideline is robust and globally supported
    "Our 24 member organisations are coordinating a global response to this study to demonstrate, on record, the unity of the ME community."
    The article includes a copy of a letter sent to the Guardian.
    "... it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives."
    Article | Thread

    ME Association The ME Association and NICE robustly defend the clinical recommendations for managing ME/CFS
    “These recommendations have been widely welcomed by the ME/CFS patient community, and by most health professionals who are actively involved in managing people with ME/ CFS in both primary and secondary care here in the UK and overseas.”
    Article | Thread

    Media articles

    The Guardian
    Chronic fatigue guidance discouraging exercise is flawed, say researchers - Rachel Hall
    "Study criticises research method behind new Nice guidelines, which also no longer recommend cognitive behavioural therapy"
    Chalder and Garner are quoted supporting the analysis and claiming that the new guideline will harm patients.
    NICE is quoted: “We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients. [...] We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”
    Article | Thread

    Canary The Guardian has thrown the ME community under the bus, using bias and misinformation - Steve Topple
    "Overall, the Guardian‘s article was yet another hit piece on a community whom the medical establishment, state, and society have abused for decades".
    Article | Thread

    More media articles Yahoo! Life: ‘Shortcomings’ identified in chronic fatigue syndrome guidance - Ella Pickover, PA Health Correspondent
    Quotes parts of the BMA article, and responses from NICE and Charles Shepherd.
    Article | Thread
    Other media articles also quote the authors' uncritically, some also quoting NICE or Charles Shepherd
    Evening Standard | The Independent | Yahoo News | Pulse Today
    __________________
     
    Last edited: Jul 16, 2023
    rvallee, Hutan and Sean like this.
Thread Status:
Not open for further replies.

Share This Page