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News in Brief - October 2021

Discussion in 'Weekly ME News in Brief' started by Trish, Oct 10, 2021.

  1. Trish

    Trish Moderator Staff Member

    Messages:
    36,342
    Location:
    UK
    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.
     
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  2. Trish

    Trish Moderator Staff Member

    Messages:
    36,342
    Location:
    UK
    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
     
  3. Trish

    Trish Moderator Staff Member

    Messages:
    36,342
    Location:
    UK
    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.
     
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  4. Trish

    Trish Moderator Staff Member

    Messages:
    36,342
    Location:
    UK
    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
     
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  5. Trish

    Trish Moderator Staff Member

    Messages:
    36,342
    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
    ................

    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
     
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