This thread has a Science for ME 'News in Brief' post for each week in October 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week's news.
Week beginning 4th October 2021 __________________ In memory Graham McPhee We are sad to report the passing of our dear friend and foundation Science for ME forum member, Graham McPhee. Graham was a witty, wise, kind and welcoming member of the patient community and a thoroughly decent human being. He was an example and friend to us all and will be greatly missed. Our condolences to Graham's family and his many friends. Thread here (members only) For many years, Graham devoted much of his limited energy to making the lives of people with ME better, as a citizen scientist with several published papers, and as a teacher with videos including a series explaining the flaws in the PACE trial. Links to threads with some of Graham's work here and here ____________________ News, articles and advocacy Dialogues for a neglected illness "ME/CFS - 2021 NICE - a turning point becomes a debacle". Another excellent information film about ME. This time about the importance of having GET/CBT removed from the NICE guidelines. The film includes comments from Prof. Brian Hughes, Prof. Jonathan Edwards, Dr. Charles Shepherd, Dr Luis Nacul, Dr. Nina Muirhead, Dr. Christopher Snell, Professor Mark VanNess, Dr. Ben Marsh and independent researcher Tom Kindlon. Duration 10 minutes. The film is dedicated to the memory of Graham McPhee (see item above). Film here Thread here 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 Medpage Today Collins to Step Down as NIH Director at Year's End The article takes a look at Francis Collins' legacy as he's about to step down as NIH Director. He disagrees that NIH and the research community has not taken ME/CFS seriously enough but adds: there are problems [in that] CFS has become such a blurry diagnosis, that in there amongst hundreds of thousands or millions of people who carry that diagnosis is a whole heterogeneous group and there may be individuals ... who have something else entirely or even people who are suffering from depression and are therefore feeling fatigue for that [reason]. I think that's added to the difficulty that the medical care system has had coming to grips with this as a real disease that has a desperate need for new treatments." Article here (Registration needed) Thread here UK ME Association has announced the appointment of Professor Leslie Findley as a patron of the ME Association. He is a retired neurologist who the MEA say 'is one of a small number of neurologists who truly believe that ME is a neurological disease and should be managed as such'. He was involved in running NHS and private services for ME patients in Essex. The appointment as patron has proved controversial on social media, with some former patients reporting being helped and others reporting inappropriate and harmful treatments and behaviour. MEA article here Thread here Poem Lawyer and ME/CFS sufferer Veronica Ashenhurst has written a poem about medical misogyny titled "Hippocrates' Staff" for the magazine Uppagus. Poem here Thread here Video "Winning Isn't Easy: Eight Common Reasons Why ME/CFS Long-Term Disability Claims Get Denied" Nancy Cavey, an attorney with expertise in long-term and ERISA disability claims, discusses the most common reasons that insurance companies deny claims for ME/CFS. Video here Thread here Open Medicine Foundation interviews author Jean Meltzer about her new novel, “The Matzah Ball,” which features a main character who has ME/CFS. Meltzer was diagnosed with ME/CFS in 1998. Interview here Thread here World ME Alliance The World ME Alliance formally called International Alliance for ME, presents a new website and branding. The alliance brings together national ME/CFS organizations such as ME Action, Solve ME/CFS, Action for ME, ANZMES, to have a global influence. Announcement here Thread here ME/CFS Alert "In this episode, Llewellyn King talks with Dr. Bateman about how she became involved in the field of ME/CFS research, how that research is accelerating, and why she feels hopeful. Dr. Bateman also speaks about ME/CFS specialists' heavy patient loads, and her hope that more doctors -- perhaps as a result of seeing Long Covid patients -- will enter the field." Duration: 23 minutes Video here Thread here .............. Research Psychopharmacology "Neurochemical abnormalities in chronic fatigue syndrome: a pilot magnetic resonance spectroscopy study at 7 Tesla" by Godlewska et al. Studied 22 CFS patients (Fukuda criteria) and 13 healthy controls who underwent MRS scanning at 7 T with a voxel placed in the anterior cingulate cortex. Neurometabolite concentrations were calculated. 'The changes in glutathione and creatine are consistent with the presence of oxidative and energetic stress in CFS patients and are potentially remediable by nutritional intervention. A reduction in myo-inositol would be consistent with glial dysfunction. However, the relationship of the neurochemical abnormalities to the causation of CFS remains to be established, and the current findings require prospective replication in a larger sample.' Paper here Thread here UK Bath University - Ph.D. Thesis "Personal Informatics Systems and the Integration of Data from Novel Sensor Technologies" by Cillian Dudley Chapter 5 "Making Sense of Novel Sensor Data Within The Context of Fatigue" Nine people with ME/CFS or idiopathic chronic fatigue tested a Fitbit for heart rate and step monitoring. Some found it helpful for pacing but recommended much longer time scales than the 3 weeks tested. They also tested a wearable EEG monitor purported to provide information on brain activity and mood, but found the data confusing and interpretations inaccurate. Thesis here Thread here Journal of Psychosomatic Research “Central sensitisation in chronic fatigue syndrome and fibromyalgia; a case control study” Bourke et al. The research team of Peter White from Queen Mary University of London reports that patients suffering from chronic fatigue syndrome or fibromyalgia have lower pain thresholds compared to healthy controls, suggesting central sensitization. Article here Thread here ................. Fundraising David Tuller Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2021 A crowdfund to support Dr. David Tuller's position and crucial work as Senior Fellow in Public Health and Journalism, UC Berkeley, from January through June of 2022. The crowdfunding aims to raise $64,000 USD and ends October 31st. David Tuller has written an article titled "UC Berkeley's October Crowdfunding Campaign" with background information of how and why he got started and a summary of recent highlights from his work. Crowdfunding here Article here Thread here ................ Coming events Solve ME/CFS webinar "Long Covid: What Do We Know So Far? (Session III)" October 19, 10 AM Pacific / 1 PM Eastern This webinar, moderated by Solve M.E.'s Sadie Whittaker, will discuss preliminary research findings and answer questions from the virtual audience. Dr. Jill Jaycox of Yale University and Dr. Carmen Scheibenbogen of University Hospital Charité will join this session. Details here Register here Thread here ................ Covid-19, Long Covid and ME Trial by Error by David Tuller BBC's Problematic Coverage of New Long COVID Study On how drawing parallels between COVID-19 and influenza can lead to minimising of Long COVID. Article here Thread here The New Statesman "Society is ableist": Alice Hattrick on gender, chronic illness and long Covid. Interview with ME sufferer Alice Hattrick who has written the book "Ill Feelings", which is described as "a blend of memoir, literary criticism, and analysis into the social effects of chronic illness". Article here Thread here More items of interest Rolling Stone People With Long Covid Are Risking Their Health Going Back to the Office Article here Thread here Social Science Space On Taking Long COVID Seriously by Steven Lubet Article here Thread here .................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 11th October 2021 - part 1 News, articles and advocacy UK - NICE ME/CFS guideline See part 2 of this week's news for an update on the delay and roundtable. Germany A petition to the Bundestag has been launched. If it reaches 50,000 signatories, a hearing must be held in a public committee meeting. Anyone can sign. Instructions on how to sign are provided below. Petition here Thread here and here France October 9, 2021, The French town Grenoble hosted a mobilization organized by the association Millions Missing France aimed at raising awareness of ME/CFS. They were supported by young percussionists of la BatukaVI, a batucada of children from Grenoble. Article here Thread here UK ME Association "ME Association Trustee’s Statement re: the appointment of Professor Findley as Patron of the charity" Following 'some notable objections and strong expressions of concern', the trustees have raised these with Professor Findley and will make a further statement once he has responded. They have invited e-mails about any further concerns. Article here Thread here The Swedish patient organisation RME recently organised an ME conference. Talks from the conference are now available on their YouTube channel, including a lecture in English by professor Anthony Komaroff who gave an overview of international research into ME. RME's YouTube channel here Thread here Trial by Error by David Tuller North Bristol NHS Trust's Biased Survey of Patients Attending "CFS/ME Specialist Services" About a survey conducted two years ago where respondents agreed that specialist care should be available for ME/CFS patients. Tuller shows how the survey was biased and why it should not be used as an argument to keep GET/CBT oriented clinics. Article here Thread here ................. Biomedical research and research news International Journal of Environmental Research and Public Health "Potential Implications of Mammalian Transient Receptor Potential Melastatin 7 in the Pathophysiology of ME/CFS" by Du Preez, Staines et al From the abstract: 'In this review, we present TRPM7 as a potential candidate in the pathomechanism of ME/CFS, as TRPM7 is increasingly recognized as a key mediator of physiological and pathophysiological mechanisms affecting neurological, immunological, cardiovascular, and metabolic processes.' Paper here Thread here International Journal of Molecular Sciences "Improvement Effects of Myelophil on Symptoms of Chronic Fatigue Syndrome in a Reserpine-Induced Mouse Model" by Song et al This Korean team attempted to model CFS with the drug Reserpine which 'induced depression, pain, and fatigue behaviors in mice'. They then treated them with combination of 2 herbs, and assessed symptoms and biochemical changes. Paper here Thread here USA study recruiting 'A Cardiovascular Analysis of Post-exertional Malaise' led by Benjamin Natelson, Professor of Neurology at Icahn School of Medicine, Mount Sinai, New York. The study includes 2 day cardio pulmonary exercise tests, measuring blood volume, occurence of PEM, and different ME severity levels. Details here Thread here Morten Group Oxford Dr Karl Morten reports on Twitter that his group now has 2 PhD students 'exploring factors in the blood in ME/CFS and Chronic Lyme'. Tweets here Thread here ME Research UK & The Gordon Parish Charitable Trust announce a new research grant to Bhupesh Prusty, Julius Maximilian University of Würzburg, for a study entitled "Understanding potential infectious triggers behind mitochondrial dysfunction in ME/CFS". Tweet here Thread here ................. Other research International Journal of Environmental Research and Public Health “Impact of Life Stressors on ME/CFS Symptoms: An Australian Longitudinal Study” by Balinas et al. In this study 36 ME/CFS patients completed online questionnaires for a period of 5 months to see how life stressors such as work and financial disruptions may contribute to exacerbations of ME/CFS symptoms. Article here Thread here International Journal of Environmental Research and Public Health “Network Analysis of Symptoms Co-Occurrence in Chronic Fatigue Syndrome” Kujawski et al. The authors studied the relationship between ME/CFS symptoms in a Polish cohort of 110 patients. the total number of symptoms, sore throat, and post-exertional malaise emerged as important nodes in the network analysis. Article here Thread here ................. Coming events Webinar: "Advances in Our Understanding of ME/CFS and the Effects of Long Covid" Saturday, Oct. 23, 12:30 - 4:00 PM Eastern Time This webinar is brought to you by the Massachusetts ME/CFS and FM Association in partnership with the National Institutes of Health. Registration required, and a donation is requested, but a number of free registrations are available. Register here Thread here Webinar: "Double-Edged Sword of Research for BIPOC" Thursday, Nov. 11, 5:30 - 6:30 PM Pacific Time Join Jaime Seltzer from MEAction and Leticia Vaca from Urban Health Group Wellness for a community conversation on the importance of diversity in health research. Register here Thread here ................. Fundraising David Tuller Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2021 A crowdfund to support Dr. David Tuller's position and crucial work as Senior Fellow in Public Health and Journalism, UC Berkeley, from January through June of 2022. The crowdfunding aims to raise $64,000 USD and ends October 31st. Crowdfunding here Thread here ................. Covid-19, Long Covid and ME Bloomberg Law Long Covid Doubles Burden of Mystery Illness Few Doctors Treat Useful article with quotes from among others Elisabeth Unger, Lily Chu and Lucinda Bateman. Bateman says the following about Covid-19: "It's thrusting the awareness of post-viral syndrome and these debilitating multi-system illnesses right into the forefront of medicine". Article here Thread here This Week in Virology Long Covid and ME/CFS with David Tuller A podcast interview by Professor Vincent Racaniello with Dr David Tuller. "David Tuller returns to TWiV to revisit his work to expose the methodological and ethics problems with the PACE trial, and the post-acute sequelae to SARS-CoV-2 infection, also known as long COVID". Duration 1h 10 min. YouTube video here Thread here Other items of interest 9News 'These people aren't crazy': How long COVID could help sufferers of other little understood syndromes Article here Thread here NewsGP WHO officially recognises long COVID Article here Thread here ABC News Is this me for life? Article here Thread here ............... Continued in the next post.
Week beginning 11th October 2021 - part 2 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 ....................... S4ME social media: Facebook, Twitter and You Tube
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 ................ Other news, articles and advocacy UK Priority Setting Partnership The next survey will be launched on Monday 25th October: 'Prioritise your top ten ME/CFS research questions'. Tweet here Thread here ME/CFS Australia have called for Australians with ME/CFS to lodge a submission to the Disability Royal Commission. They have produced a guide to help with preparing submissions. Guide here Submissions here Thread here UK - ME Association "Professor Findley withdraws as Patron of the ME Association" On 20th October, following concerns expressed by some of its members, the ME Association posted a statement from Professor Findley. 'Having spent decades working in the field of CFS/ME, it has never been my intent to cause any distress to people with ME or indeed to damage the reputation of the ME Association... I feel that the recent social media activity has distracted from the good work of the ME Association ... In light of this, I have declined the offer of Patron...' Full statement here Thread here Norway Emilie Brandshaug is a young woman suffering from severe ME. She has written a moving opinion piece for the Norwegian broadcaster about ME where she also presents the new Minister of Health with five ways to improve the situation for ME patients. Opinion piece here (in Norwegian) Thread here #MEAction "Is NIH blowing another opportunity to advance ME/CFS research?" Prior to the NIH webinar on Oct. 22 #MEAction posted an article discussing missed opportunities for ME/CFS research. Included was a list of questions for NIH to address at the meeting. Article here Thread here USA - NIH ME/CFS Advocacy Call This webinar was held on Friday, Oct. 22. The recording is not yet available on the Trans-NIH ME/CFS events page but some forum members attended and have posted their thoughts about the call. 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 Marathon Mike Mike has published the race report for his last marathon in Zagreb. It includes interviews with patients and a coverage of his run on Croatian TV. Thanks to Mike's efforts £1300 was raised for Invest In ME. His next marathon is in Rome on March 27. Article here Thread here ................ Biomedical research and research news USA study recruiting: Ron Davis’s lab at Stanford, in collaboration with Harvard University and Vassar College, is conducting a functional microbiome study. They are looking for severely ill, primarily bed-bound patients within the United States to participate. Details here Thread here Massachusetts ME/CFS & FM webinar research update was held on 23 October. Speakers included Vicky Whittemore and Avi Nath from NIH, and ME researchers Ian Lipkin, Derya Unutmaz, Maureen Hansen and Lucinda Bateman. Some forum members watched and shared their notes. Topics discussed included some of the most recent research findings from the NIH study and others. The 3.5 hour webinar will be put on YouTube. Thread here Pain Medicine “Pain-related post-exertional malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: A systematic review and three-level meta-analysis” by Barhorst et al. The authors conducted a systematic review of studies that measured pain symptoms in ME/CFS and fibromyalgia patients before and after a standardized aerobic exercise. The study concludes that patients experienced small-to-moderate increases in pain severity following exercise compared to controls. Article here Thread here International Journal of Psychophysiology “Cortical autonomic network connectivity predicts symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)” by Zinn & Jason. This study explores the role of the cortical autonomic network in 34 patients with ME/CFS and 34 healthy controls under task-free conditions who underwent resting-state quantitative electroencephalographic (qEEG). Article here Thread here Physios for ME In October Physios for ME rolled out an international survey of experiences and attitudes towards pacing using a heart rate monitor. There were 515 responses within just 3 weeks showing a strong engagement. The authors are analysing the results but the raw data has already been submitted to the NICE roundtable discussion as evidence of other management options outside of GET/CBT. Article here Thread here .................. Fundraising David Tuller Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff, Fall 2021 This is the last week of the crowdfunding to support Dr. David Tuller's position and crucial work as Senior Fellow in Public Health and Journalism, UC Berkeley, from January through June of 2022. The crowdfunding aims to raise $64,000 USD and ends October 31st. Crowdfunding here Thread here Donations in memory of Graham McPhee Graham's family have set up a fundraiser in his memory, with the chosen charities Invest in ME Research, the ME Association, and ME Research UK. Donations can be sent online or by post. Fundraiser here Thread here .................. Covid-19, Long Covid and ME The Times "Long Covid and ME - Patients deserve a better approach" by Sonya Chowdhury, chief executive of Action for ME. This commentary describes the large numbers with Long Covid now being diagnosed with ME, ongoing problems with stigma, the need for better care, the merger of AfME with the ME Trust, and Decode ME. Article here Thread here BBC 8 minute news segment about Long Covid and "Apheresis" treatment. MD and Long Covid sufferer Asad Khan is among the interviewed and says "it is a myth that Long Covid and other invisible illnesses such as ME are psychological just because certain tests are normal". News segment here Thread here Other items of interest abc.net Long COVID is ruining lives, but it also presents Australia with an opportunity Article here Thread here Social Science Space Going Around in Circles with Long COVID - by Steve Lubet Article here Thread here STAT News Don't give Covid-19 long-haulers the silent treatment Article here Thread here Medical Express Study finds association between long COVID symptoms and altered oral microbiome Article here Thread here .................. S4ME social media: Facebook, Twitter and You Tube
Week beginning 25th October 2021 Part 1 of 3 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
Week beginning 25th October 2021 post 2 of 3 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 ____________________________________________ See the next post for the rest of this week's news.
Week beginning 25th October 2021 post 3 of 3 Other news, articles and advocacy UK Priority Setting Partnership Survey UK residents with ME/CFS, carers and clinicians are invited to choose their top 10 from a list of research areas to be prioritised for future research. The results of the survey will be used to help inform research funding bodies. The survey can be filled in on line or on paper on request. It closes on 13th December 2021. Question list here Survey here Thread here Webinar On 23 October 2021, the Massachusetts ME/CFS & FM Association organized an online conference that includes speakers from the NIH-funded research centers. S4ME forum members have made summaries and notes of the talks. The recording of the conference will later be made available to rewatch. Thread here Summary here Webinar Orthostatic intolerance: POTS, hypotension and more Professor Peter Rowe recently gave a talk about OI at a webinar organised by the Norwegian ME Association. The webinar is now available on YouTube. Duration: 1h 31m. YouTube video here Thread here Israel The National Insurance Institute now recognizes Fibromyalgia and Chronic Fatigue Syndrome as disabling conditions which means patients are eligible for state disability payments. Article here Thread here USA An update from Solve ME noted the one year anniversary of their You + ME Registry which now includes data from 5000 members. Two studies using this data, a saliva biomarkers study and a COVID vaccination study, are currently underway. Article here Thread here M.E. & My Island Interview with Doctor Nina Muirhead Lisa, aka The Unlikely Gamer, talks to Dr. Nina Muirhead about being a medical doctor with ME, the organisation Doctors with M.E., and her take on the updated NICE Guidelines. There's both a written and an audio version of the interview. Interview here Thread here Marathon Mike Mike's EU Marathons spoke with S4ME forum member Svetoslav about what life with ME/CFS is like for him in Bulgaria. Article here Thread here .................. Biomedical research Fatigue: Biomedicine, Health & Behavior "Saliva fatigue biomarker index as a marker for severe ME/CFS in a community based sample" by Jason et al This study examined the ratio of the concentrations of 2 peptide fragments in saliva, referred to as the Fatigue Biomarker Index (FBI), in participants aged 5 - 17 diagnosed with ME/CFS (n = 59) and matched controls (n = 39). 'Significant overall differences were found in the FBI between those participants with severe ME/CFS and those with ME/CFS and the controls'. Note that the definition used for severe ME is not the normal descriptive one, but simply that the patient fits two diagnositic criteria. Larger studies are needed before this can be considered as a biomarker. Paper here Thread here BioRxiv “Multi-omics of host-microbiome interactions in short- and long-term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)” by xiong et al. In this preprint, the ME/CFS research center led by Derya Unutmaz reports the results of metagenomics of gut microbiota and plasma metabolomics in 154 patients and 79 healthy controls. Short-term ME/CFS was associated with more microbial dysbiosis, but long-term ME/CFS was associated with markedly more severe phenotypic and metabolic abnormalities. Preprint here Thread here .................. Other research Frontiers in psychiatry “Clinical Heterogeneity in ME/CFS. A Way to Understand Long-COVID19 Fatigue” by Murga et al. This Spanish research team used Clustering analysis to identify five phenotypes in ME/CFS patients. Article here Thread here BMJ Open “Clinical efficacy of COMPASS, a digital cognitive-behavioural therapy programme for treating anxiety and depression in patients with long-term physical health conditions: a protocol for randomised controlled trial.” By Kulme et al. This is the protocol of the COMPASS study led by Rona Moss-Morris. It will test the effect of digital cognitive-behavioral therapy versus standard charity support for anxiety and depression in patients with long-term physical health conditions. Article here Thread here ................... Fundraising Donations in memory of Graham McPhee Graham's family have set up a fundraiser in his memory, with the chosen charities Invest in ME Research, the ME Association, and ME Research UK. Donations can be sent online or by post. Fundraiser here Thread here David Tuller's fundraising completed The fundraising campaign for "Trial By Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff" reached its goal a week before its deadline. This means that David Tuller is fully funded from January through June 2022 for his position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health at UC Berkeley and can continue his important work. Thank you to everyone who contributed! Fundraiser here Thread here .................... Covid-19, Long Covid and ME 10 news In-Depth: Researchers find similarities between long COVID and chronic fatigue syndrome About the need for more research and funding of joint investigations into Long Covid and ME/CFS. Jamie Seltzer, director of MEAction says: "We're going to have people who are disabled for the rest of their lives. And the idea that this is a simple, fixable, easy condition, or that people just feel a little tired, is absolutely naive". Article here Thread here PolyBio Research Foundation Interview with Dr. David Putrino: Treatment/research at Mt. Sinai's LongCovid (Post-COVID) Clinic. Dr. Amy Proal interviews dr. David Putrino, Director of Rehabilitation Innovation for the Mount Sinai Health System and associate professor at the Icahn School of Medicine at Mount Sinai on among other his approach to Long Covid, rehabilitation in patients with PEM and patient collaboration. Duration: 48 minutes YouTube video here Thread here Other items of interest The Ezra Klein Show Long Covid and the Blind Spots of American Medicine Podcast here Thread here The New York Times Another Struggle for Long Covid Patients: Disability Benefits Article here Thread here fast.ai Medicine is Political by Rachel Thomas Article here Thread here Webinar Long COVID: We Are Here! with among others dr. Levine, Dr. Lipkin and dr. Over Amitay YouTube video here Thread here ..................... S4ME social media: Facebook, Twitter and You Tube
