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News in Brief - August 2021
- Thread starter Trish
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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
..................
News, articles, webinar and advocacy
USA #MEAction has written a draft response to the CDC document, "CDC Draft Systematic Review Report for Diagnosis and Treatment of ME/CFS." #MEAction invites people to add their names to the response by August 15.
PDF here Petition here Thread here
Germany
22 July is World Brain Day. The German Society for ME/CFS used this opportunity to contact the neurological professional associations in Germany.
Letter here Thread here
UK - DecodeME
Job vacancy Recruitment and Support Worker (part time for 1 year). Applications close 16th August.
Details here Thread here
August Webinar
Recording of a webinar with researcher Chris Ponting and Sonya Chowdhury from Action for ME. The webinar provides an update from the DecodeME study and a Q&A session. Duration: 46 minutes.
Webinar here Thread here
Broken Battery Severe and Very Severe ME/CFS
A new and yet again poignant film from Broken Battery showing the reality of severe ME with a collation of pictures and quotes from interviews, lectures and documents. Duration: 8 minutes
Film here Thread here
UK Action for ME is in discussions over a possible merger with a smaller UK charity, The ME Trust, which focuses on providing access to care for individuals with ME.
Article here Thread here
Cochrane
Hilda Bastian, lead of the Independent Advisory Group (IAG) for the Cochrane review on exercise therapy for CFS, published a new update. Bastian and Cochrane’s editor-in-chief, Karla Soares-Weiser, decided to expand the IAG with an extra 11th position for a person who has recovered from ME/CFS.
Article here Thread here
Photography exhibition for Severe ME Awareness Day
The Australian illustrator and graphic designer Amanda Francey has prepared a photography exhibition titled "Underexposed within four walls" in honour of Severe ME Awareness day.
Website here (launching 8th August) Trailer here Thread here
2021 Severe ME Artists Project by #MEAction
In recognition of Severe ME Day, August 8, #MEAction collected art from ME patients, available as a video (posted on YouTube) and also a gallery on the #MEAction website.
Video here Gallery here Thread here
...................
Biomedical research
Intervirology
"Human Herpesvirus 6 Infection and risk of Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis" by Mozhgani S.-H et al.
The researchers did a literature search identifying 17 studies for their systematic review and 11 studies for their meta-analysis. They conclude that the association between the HHV-6 infection and CFS incidence is substantiated, but also that "future studies should consider additional factors that may have affected the significance of such a correlation".
Paper here Thread here
European Journal of Neuroscience
"Diffusion tensor imaging reveals neuronal microstructural changes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Thapalla, Marshall-Gradisnik et al
The researchers evaluated diffusion tensor imaging (DTI) to investigate microstructural abnormalities in 25 ME/CFS patients (Fukuda criteria) and 18 ME/CFS patients (International Consent Criteria/ICC) as well as 26 healthy controls (HC). "Our study demonstrated that DTI parameters are sensitive to microstructural changes in ME/CFS ICC and could potentially act as an imaging biomarker of abnormal pathophysiology in ME/CFS. The study also shows that strict case definitions are essential in investigation of the pathophysiology of ME/CFS".
Study here Thread here
....................
Other research
Healthcare
“ME/CFS: Past, Present and Future” by Weir & Speight
The authors provide a historical perspective on ME/CFS and argue that “the route to proper understanding and treatment of ME/CFS is through further scientific research rather than psychological theorisation.”
Article here Thread here
AMA Journal of Ethics
“Questioning Biomedicine’s Privileging of Disease and Measurability” by Camille Kroll
The author argues that “Adhering strictly to a biomedical model of thinking about disease and diagnosis can prevent clinicians from empathically engaging with patients and helping them navigate their illness experiences.”
Article here Thread here
AMA Journal of Ethics
“A Womanist Approach to Caring for Patients With Empirically Unverifiable Symptoms” by Annette Madlock Gatison
The authors argue that clinicians and health care systems tend to focus exclusively on measurability, and that this can result in undervaluation of experience narrative of conditions such as ME/CFS.
Article here Thread here
.................
Surveys and petitions
UK Action for ME have launched a petition 'Equity for ME'.
'Today we're launching a petition calling for the UK Governments to commit the same level of research funding and recognition to M.E. as we have seen with Long Covid.'
Article here Petition here Thread here
UK Health Psychology Masters degree student, Catherine Haslam, is inviting people to fill in a survey on 'what explanations GPs use for conditions that have no agreed biomedical cause and the impact of those explanations on social support and stigma.'
Survey here Thread here
....................
Coming Events
You + ME Registry and Biobank Webinar - "Long Covid: What Do We know So Far?"
Dr. Bhupesh Prusty will share research and answer questions in a webinar scheduled for Monday, Sept. 20, at 2:30 PM Eastern/11:30 AM Pacific. Registration is required.
Details here Thread here
....................
Covid-19 and ME
The Psychologisation of Illness - Why Long Covid (and ME/CFS) Are Not 'Just Anxiety'
A very good discussion about the psychologisation of Long Covid and ME/CFS, how medics are trained, and prejudice in medicine. Panelists: Professor Brian Hughes, Dr. Nina Muirhead, Sara Graham, Dr. Shaun Qureshi and Dr. Ian Frayling. Hosted by Gez Medinger and Dr. Asad Khan on YouTube.
Part 1 here Part 2 here Thread here
Columbia Mailman School of Public Health "Is Long COVID Really Chronic Fatigue Syndrome by Another Name?"
A summary of a panel discussion from June by WNYC Radio's 2021 Health Convening with ME researcher Mady Hornig and director of NINDS, Walter J. Koroshetz on the panel. Provided research moves ahead quickly, Hornig envisions that in a year there may be "a cohort of docs who are educated in these manifestations and maybe have something in their toolkits".
Article here Thread here
The Journal of Injury, Function and Rehabilitation (PM&R)
“Multi-Disciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of Fatigue in Post-Acute Sequelae of SARS-CoV-2 infection (PASC) Patients” by Herrera et al.
This paper provides a consensus statement on the treatment of fatigue in patients with PASC. It argues that “the presentation of fatigue in individuals with PASC may appear similar to myalgic encephalomyelitis/chronic fatigue syndrome.”
Article here Thread here
Other item of interest
healthychildren.org "Long-Haul COVID-19 in Children and Teens" by Peter Rowe.
Article here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
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
..................
News, articles, webinar and advocacy
USA #MEAction has written a draft response to the CDC document, "CDC Draft Systematic Review Report for Diagnosis and Treatment of ME/CFS." #MEAction invites people to add their names to the response by August 15.
PDF here Petition here Thread here
Germany
22 July is World Brain Day. The German Society for ME/CFS used this opportunity to contact the neurological professional associations in Germany.
Letter here Thread here
UK - DecodeME
Job vacancy Recruitment and Support Worker (part time for 1 year). Applications close 16th August.
Details here Thread here
August Webinar
Recording of a webinar with researcher Chris Ponting and Sonya Chowdhury from Action for ME. The webinar provides an update from the DecodeME study and a Q&A session. Duration: 46 minutes.
Webinar here Thread here
Broken Battery Severe and Very Severe ME/CFS
A new and yet again poignant film from Broken Battery showing the reality of severe ME with a collation of pictures and quotes from interviews, lectures and documents. Duration: 8 minutes
Film here Thread here
UK Action for ME is in discussions over a possible merger with a smaller UK charity, The ME Trust, which focuses on providing access to care for individuals with ME.
Article here Thread here
Cochrane
Hilda Bastian, lead of the Independent Advisory Group (IAG) for the Cochrane review on exercise therapy for CFS, published a new update. Bastian and Cochrane’s editor-in-chief, Karla Soares-Weiser, decided to expand the IAG with an extra 11th position for a person who has recovered from ME/CFS.
Article here Thread here
Photography exhibition for Severe ME Awareness Day
The Australian illustrator and graphic designer Amanda Francey has prepared a photography exhibition titled "Underexposed within four walls" in honour of Severe ME Awareness day.
Website here (launching 8th August) Trailer here Thread here
2021 Severe ME Artists Project by #MEAction
In recognition of Severe ME Day, August 8, #MEAction collected art from ME patients, available as a video (posted on YouTube) and also a gallery on the #MEAction website.
Video here Gallery here Thread here
...................
Biomedical research
Intervirology
"Human Herpesvirus 6 Infection and risk of Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis" by Mozhgani S.-H et al.
The researchers did a literature search identifying 17 studies for their systematic review and 11 studies for their meta-analysis. They conclude that the association between the HHV-6 infection and CFS incidence is substantiated, but also that "future studies should consider additional factors that may have affected the significance of such a correlation".
Paper here Thread here
European Journal of Neuroscience
"Diffusion tensor imaging reveals neuronal microstructural changes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Thapalla, Marshall-Gradisnik et al
The researchers evaluated diffusion tensor imaging (DTI) to investigate microstructural abnormalities in 25 ME/CFS patients (Fukuda criteria) and 18 ME/CFS patients (International Consent Criteria/ICC) as well as 26 healthy controls (HC). "Our study demonstrated that DTI parameters are sensitive to microstructural changes in ME/CFS ICC and could potentially act as an imaging biomarker of abnormal pathophysiology in ME/CFS. The study also shows that strict case definitions are essential in investigation of the pathophysiology of ME/CFS".
Study here Thread here
....................
Other research
Healthcare
“ME/CFS: Past, Present and Future” by Weir & Speight
The authors provide a historical perspective on ME/CFS and argue that “the route to proper understanding and treatment of ME/CFS is through further scientific research rather than psychological theorisation.”
Article here Thread here
AMA Journal of Ethics
“Questioning Biomedicine’s Privileging of Disease and Measurability” by Camille Kroll
The author argues that “Adhering strictly to a biomedical model of thinking about disease and diagnosis can prevent clinicians from empathically engaging with patients and helping them navigate their illness experiences.”
Article here Thread here
AMA Journal of Ethics
“A Womanist Approach to Caring for Patients With Empirically Unverifiable Symptoms” by Annette Madlock Gatison
The authors argue that clinicians and health care systems tend to focus exclusively on measurability, and that this can result in undervaluation of experience narrative of conditions such as ME/CFS.
Article here Thread here
.................
Surveys and petitions
UK Action for ME have launched a petition 'Equity for ME'.
'Today we're launching a petition calling for the UK Governments to commit the same level of research funding and recognition to M.E. as we have seen with Long Covid.'
Article here Petition here Thread here
UK Health Psychology Masters degree student, Catherine Haslam, is inviting people to fill in a survey on 'what explanations GPs use for conditions that have no agreed biomedical cause and the impact of those explanations on social support and stigma.'
Survey here Thread here
....................
Coming Events
You + ME Registry and Biobank Webinar - "Long Covid: What Do We know So Far?"
Dr. Bhupesh Prusty will share research and answer questions in a webinar scheduled for Monday, Sept. 20, at 2:30 PM Eastern/11:30 AM Pacific. Registration is required.
Details here Thread here
....................
Covid-19 and ME
The Psychologisation of Illness - Why Long Covid (and ME/CFS) Are Not 'Just Anxiety'
A very good discussion about the psychologisation of Long Covid and ME/CFS, how medics are trained, and prejudice in medicine. Panelists: Professor Brian Hughes, Dr. Nina Muirhead, Sara Graham, Dr. Shaun Qureshi and Dr. Ian Frayling. Hosted by Gez Medinger and Dr. Asad Khan on YouTube.
Part 1 here Part 2 here Thread here
Columbia Mailman School of Public Health "Is Long COVID Really Chronic Fatigue Syndrome by Another Name?"
A summary of a panel discussion from June by WNYC Radio's 2021 Health Convening with ME researcher Mady Hornig and director of NINDS, Walter J. Koroshetz on the panel. Provided research moves ahead quickly, Hornig envisions that in a year there may be "a cohort of docs who are educated in these manifestations and maybe have something in their toolkits".
Article here Thread here
The Journal of Injury, Function and Rehabilitation (PM&R)
“Multi-Disciplinary Collaborative Consensus Guidance Statement on the Assessment and Treatment of Fatigue in Post-Acute Sequelae of SARS-CoV-2 infection (PASC) Patients” by Herrera et al.
This paper provides a consensus statement on the treatment of fatigue in patients with PASC. It argues that “the presentation of fatigue in individuals with PASC may appear similar to myalgic encephalomyelitis/chronic fatigue syndrome.”
Article here Thread here
Other item of interest
healthychildren.org "Long-Haul COVID-19 in Children and Teens" by Peter Rowe.
Article here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 9th August 2021
News, articles and advocacy
USA - CDC draft evidence review for ME/CFS
Closing date for submissions August 15.
It has been decided that this review will not be used to develop a new clinical guideline as there is no new evidence of effective treatements for ME/CFS.
'#MEAction’s response focuses exclusively on the CBT & GET findings, which we consider to have the potential to do the most harm to people with ME.'
Thread with links here
'Emerge Australia has submitted a comment on this review out of concern that it does not accurately reflect the state of evidence for graded exercise therapy (GET) and cognitive behaviour therapy (CBT) as treatments for ME/CFS, overstating their benefit, and that it will contribute to the ongoing harm to patients with the condition.'
Thread with link here
Occupy M.E. "The 2020 NIH Funding Fact Check"
New blog post from Jennie Spotila with detailed analysis of NIH spending on ME/CFS research for 2020. NIH claims to have spent $15 million but the actual amount is slightly under $13 million.
Blog here Thread here
Workwell Foundation has released a recording of their webinar with Kantor & Kantor LLP, "COVID-19 and Disability Insurance for Individuals Living with ME/CFS" (about 1 hour and 34 minutes).
Video here Slides here Thread here
....................
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
..................
Research
BACME
“An introduction to dysregulation in ME/CFS”
The British Association for CFS/ME has published a document about a dysregulation model in ME/CFS. The text was reproduced with kind permission from the team at The Yorkshire Fatigue Clinic led by Sue Pemberton.
Document here Thread here
Journal of Clinical Medicine
“Prevalence of Chronic Fatigue Syndrome (CFS) in Korea and Japan: A Meta-Analysis” by Lim & Son
The authors conducted a meta-analysis of 8 studies (5 in Korea, 3 in Japan) which indicated a total prevalence of ME/CFS of 0.77% in Korea and 0.76% in Japan. The prevalence rate in females was approximately two-fold higher than males in Korean studies while the gender difference was less obvious in Japanese studies.
Article here Thread here
Journal of Medical Internet Research
“Effectiveness of Internet-Based Cognitive Behavior Therapy (Fatigue in Teenagers on the Internet) for Adolescents With Chronic Fatigue Syndrome in Routine Clinical Care: Observational Study” by Albers et al.
The Dutch research team of Hans Knoop reports that Internet-Based Cognitive Behavior Therapy was effectively implemented in routine clinical care and that improvements were similar as in the FITNET study.
Article here Thread here
.....................
Fundraising
Oxford University Dr Karl Morton is principal researcher on a project investigating the causes of ME/CFS: 'The study will investigate patients with ME/CFS, chronic Lyme disease and long COVID, and explore the interaction between the gut and the presence of pathogens.' Part funded by Action for ME, the team is asking for donations to cover the remainder of the costs. Target £30,000.
Donate here Thread here
....................
Coming events
International: IACFS/ME (International Association for CFS/ME) Virtual Conference August 19-21. Register before August 18. Registration fees range from $65 for patients for 1 day, to $466 for professional non-members.
Details 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
New Zealand MECFS Canterbury has coordinated a series of events in Christchurch for Dr Lynette Hodges from Massey University, with sessions for people with ME/CFS and health professionals from 23rd to 26th August.
Details here Thread here
.....................
Covid-19 and ME
PolyBio research Foundation What LongCovid may be and how to study it - Learning from ME/CFS
Lecture by Michael VanElzakker, PhD. Duration 1 hour.
YouTube video here Thread here
CHEST journal
"Persistent Exertional Intolerance after COVID-19: Insights from Invasive Cardiopulmonary Exercise Testing" by Singh, Systrom et al.
This team at Yale University used iCPET on 10 patients with decreased exercise tolerance nearly a year post Covid, and 10 matched healthy controls. From the abstract: 'Interpretation: Post-COVID-19 patients without cardiopulmonary disease demonstrate a marked reduction in peak VO2 from a peripheral rather than a central cardiac limit along with an exaggerated hyper-ventilatory response during exercise.' The authors discuss this finding in relation to their previous findings with patients with ME/CFS, saying more research is needed to determine whether the pathological mechanisms are the same.
Paper here Thread here
Nutrients
"Investigating the Relationship between Vitamin D and Persistent Symptoms Following SARS-CoV-2 Infection" by Townsend et al
Found no relationship between vitamin D status and ongoing symptoms of fatigue and exercise intolerance in 149 covid patients assessed about 11 weeks post infection.
Paper here Thread here
Neuron "How Covid-19 has transformed by science"
Yale professor and immunologist Akiko Iwasaki has written a piece for Neuron about her work which includes "understanding the pathobiology of long COVID and other post-infection syndromes that result in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". She continues: "This is a huge unmet medical need and frankly an area that has been dismissed by many physicians and scientists". Prof. Iwasaki has also been interviewed by Nature where she mentions ME as a field that hopefully will benefit from research into long Covid.
Neuron article here Nature interview here Thread here
The New England Journal of Medicine " Confronting Our Next National Health Disaster - Long-Haul Covid" by Steven Phillips and Michelle A. Williams
"The health care community, the media, and most people with long Covid have treated this syndrome as an unexpected new phenomenon. But given the long arc and enigmatic history of “new” postinfection syndromes, the emergence of long Covid should not be surprising."
Article here Thread here
BMJ "GPs need awareness about post-covid ME/CFS" by Caroline Kamau-Mitchell. This short letter points out that many people with post-covid symptoms fit diagnostic criteria for ME. GP's need to be aware of this, and not misdiagonose as psychological. The author recommends referral to occupational rehabilitation support services.
Letter here Thread here
Other items of interest
The Washington Post "My hope vs. myalgic encephalomyelitis, a chronic neuroimmune illness" by Litsa Dremousis
Article here (paywalled) Thread here
The New York Times "'This Is Really Scary': Kids Struggle With Long Covid"
Article here Thread here
The Guardian "'What is happening to me?' The teenagers trying to make sense of long Covid"
Article here Thread here
Medium "Long Covid, ME/CFS, and the Need for Allyship" by Alexis N. Misko
Article here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
News, articles and advocacy
USA - CDC draft evidence review for ME/CFS
Closing date for submissions August 15.
It has been decided that this review will not be used to develop a new clinical guideline as there is no new evidence of effective treatements for ME/CFS.
'#MEAction’s response focuses exclusively on the CBT & GET findings, which we consider to have the potential to do the most harm to people with ME.'
Thread with links here
'Emerge Australia has submitted a comment on this review out of concern that it does not accurately reflect the state of evidence for graded exercise therapy (GET) and cognitive behaviour therapy (CBT) as treatments for ME/CFS, overstating their benefit, and that it will contribute to the ongoing harm to patients with the condition.'
Thread with link here
Occupy M.E. "The 2020 NIH Funding Fact Check"
New blog post from Jennie Spotila with detailed analysis of NIH spending on ME/CFS research for 2020. NIH claims to have spent $15 million but the actual amount is slightly under $13 million.
Blog here Thread here
Workwell Foundation has released a recording of their webinar with Kantor & Kantor LLP, "COVID-19 and Disability Insurance for Individuals Living with ME/CFS" (about 1 hour and 34 minutes).
Video here Slides here Thread here
....................
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
..................
Research
BACME
“An introduction to dysregulation in ME/CFS”
The British Association for CFS/ME has published a document about a dysregulation model in ME/CFS. The text was reproduced with kind permission from the team at The Yorkshire Fatigue Clinic led by Sue Pemberton.
Document here Thread here
Journal of Clinical Medicine
“Prevalence of Chronic Fatigue Syndrome (CFS) in Korea and Japan: A Meta-Analysis” by Lim & Son
The authors conducted a meta-analysis of 8 studies (5 in Korea, 3 in Japan) which indicated a total prevalence of ME/CFS of 0.77% in Korea and 0.76% in Japan. The prevalence rate in females was approximately two-fold higher than males in Korean studies while the gender difference was less obvious in Japanese studies.
Article here Thread here
Journal of Medical Internet Research
“Effectiveness of Internet-Based Cognitive Behavior Therapy (Fatigue in Teenagers on the Internet) for Adolescents With Chronic Fatigue Syndrome in Routine Clinical Care: Observational Study” by Albers et al.
The Dutch research team of Hans Knoop reports that Internet-Based Cognitive Behavior Therapy was effectively implemented in routine clinical care and that improvements were similar as in the FITNET study.
Article here Thread here
.....................
Fundraising
Oxford University Dr Karl Morton is principal researcher on a project investigating the causes of ME/CFS: 'The study will investigate patients with ME/CFS, chronic Lyme disease and long COVID, and explore the interaction between the gut and the presence of pathogens.' Part funded by Action for ME, the team is asking for donations to cover the remainder of the costs. Target £30,000.
Donate here Thread here
....................
Coming events
International: IACFS/ME (International Association for CFS/ME) Virtual Conference August 19-21. Register before August 18. Registration fees range from $65 for patients for 1 day, to $466 for professional non-members.
Details 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
New Zealand MECFS Canterbury has coordinated a series of events in Christchurch for Dr Lynette Hodges from Massey University, with sessions for people with ME/CFS and health professionals from 23rd to 26th August.
Details here Thread here
.....................
Covid-19 and ME
PolyBio research Foundation What LongCovid may be and how to study it - Learning from ME/CFS
Lecture by Michael VanElzakker, PhD. Duration 1 hour.
YouTube video here Thread here
CHEST journal
"Persistent Exertional Intolerance after COVID-19: Insights from Invasive Cardiopulmonary Exercise Testing" by Singh, Systrom et al.
This team at Yale University used iCPET on 10 patients with decreased exercise tolerance nearly a year post Covid, and 10 matched healthy controls. From the abstract: 'Interpretation: Post-COVID-19 patients without cardiopulmonary disease demonstrate a marked reduction in peak VO2 from a peripheral rather than a central cardiac limit along with an exaggerated hyper-ventilatory response during exercise.' The authors discuss this finding in relation to their previous findings with patients with ME/CFS, saying more research is needed to determine whether the pathological mechanisms are the same.
Paper here Thread here
Nutrients
"Investigating the Relationship between Vitamin D and Persistent Symptoms Following SARS-CoV-2 Infection" by Townsend et al
Found no relationship between vitamin D status and ongoing symptoms of fatigue and exercise intolerance in 149 covid patients assessed about 11 weeks post infection.
Paper here Thread here
Neuron "How Covid-19 has transformed by science"
Yale professor and immunologist Akiko Iwasaki has written a piece for Neuron about her work which includes "understanding the pathobiology of long COVID and other post-infection syndromes that result in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". She continues: "This is a huge unmet medical need and frankly an area that has been dismissed by many physicians and scientists". Prof. Iwasaki has also been interviewed by Nature where she mentions ME as a field that hopefully will benefit from research into long Covid.
Neuron article here Nature interview here Thread here
The New England Journal of Medicine " Confronting Our Next National Health Disaster - Long-Haul Covid" by Steven Phillips and Michelle A. Williams
"The health care community, the media, and most people with long Covid have treated this syndrome as an unexpected new phenomenon. But given the long arc and enigmatic history of “new” postinfection syndromes, the emergence of long Covid should not be surprising."
Article here Thread here
BMJ "GPs need awareness about post-covid ME/CFS" by Caroline Kamau-Mitchell. This short letter points out that many people with post-covid symptoms fit diagnostic criteria for ME. GP's need to be aware of this, and not misdiagonose as psychological. The author recommends referral to occupational rehabilitation support services.
Letter here Thread here
Other items of interest
The Washington Post "My hope vs. myalgic encephalomyelitis, a chronic neuroimmune illness" by Litsa Dremousis
Article here (paywalled) Thread here
The New York Times "'This Is Really Scary': Kids Struggle With Long Covid"
Article here Thread here
The Guardian "'What is happening to me?' The teenagers trying to make sense of long Covid"
Article here Thread here
Medium "Long Covid, ME/CFS, and the Need for Allyship" by Alexis N. Misko
Article here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
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
...............
Other news, articles and advocacy
Millions Missing Canada has written a letter addressed to party leaders asking for more federal research funding for ME and a commitment to represent ME patients' concerns. They are asking Canadians to co-sign this letter and spread the word on social media.
Co-sign here Thread here
Solve M.E. has posted public comments on the CDC treatment evidence review and "strongly recommends against the adoption of this review in any format." They have also created an advocacy tool for US residents to contact their member of Congress.
Comments here Thread here
The European ME Coalition (EMEC) published a comprehensive overview of funding sources, biobanks, and networks for scientists interested in studying ME/CFS.
Article here Thread here
..................
Biomedical research
PNAS "Redox imbalance links COVID-19 and ME/CFS" by Bindu D. Paul, Anthony L. Komaroff et al
".. in this review, we summarise the evidence that people with acute COVID-19 and with ME/CFS have biological abnormalities including remix imbalance, systemic inflammation and neuroinflammation, an impaired ability to generate adenosine triphosphate, and a general hypo metabolic state".
Paper here Thread here
Brain, Behaviour, and Immunity Fine mapping of the major histocompability complex (MHC) in ME/CFS suggests involvement of both HLA class I and class II loci by Hajdarevic, Lande, Mella, Fluge et al
"In conclusion, we report, to the best of our knowledge, the first HLA fine mapping study in ME/CFS, in an attempt to address a putative immunologic component of the ME/CFS pathogenesis. We observed independent association signals from the HLA class I and class II regions, which encourage future genetic studies of the MHC in ME/CFS".
First author Riad Hajdarevic has provided a comprehensible summary in the forum thread.
Paper here Thread here
Journal of Clinical Medicine Autoantibodies to Vasoregulative G-protein-Coupled Receptors Correlate with Symptom Severity, Autonomic Dysfunction and Disability in ME/CFS by Freitar, Scheibenbogen et al
"We found levels of most AABs significantly correlated with key symptoms of fatigue and muscle pain in patients with infection-triggered onset. The severity of cognitive impairment correlated with AT1-R- and ETA-R-AAB and severity of gastrointestinal symptoms with alpha1/2-AdR-AAB. In contrast, the patients with non-infection-triggered ME/CFS showed fewer and other correlations."
Paper here Thread here
Thesis "A Cellular Chronic Fatigue" - Dysregulated Mitochondrial Respiratory Function, Metabolic and Signalling Pathways in ME/CFS and the Identification of Blood Cell-Based Biomarkers of Disease - by Daniel Missailidis
"In summation, my research has made significant strides in our mechanistic understanding of ME/CFS by identifying unique, specific defects in mitochondrial function with an accompanying array of compensatory cellular changes. This work has also highlighted multiple promising candidate diagnostic biomarkers.."
Thesis here Thread here
....................
Other research
Psychological medicine
“PRINCE Secondary: transdiagnostic CBT is not effective for persistent physical symptoms” by Tack & Tuller
David Tuller and S4ME forum member Michiel Tack have written a critical commentary on the primary publication of the PRINCE Secondary trial. They argue that cognitive-behavioral therapy (CBT) was not effective for patients with medically unexplained symptoms but that the trial authors presented their findings misleadingly.
Article here Thread here
Clinical Medicine
"Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study" by Josev et al.
This Australian study followed up on 25 adolescent patients with ME/CFS for a period of approximately 2 years. Although most patients showed significant improvements, 65 percent continued to fulfill ME/CFS diagnostic criteria at follow-up.
Article here Thread here
....................
Coming events
Free Webinar - Beyond the Symptom: The Biology of Fatigue
This two day webinar, organized by the Sleep Research Society and the Neurobiology of Fatigue Working Group of the NIH Blueprint Neuroscience Research Program, with support from the Blueprint Neuroscience Research Program, is scheduled for September 27-28 from 10:00 am to 6:00 PM Eastern time.
Details here Register here Thread here
.....................
Covid-19, Long Covid and ME
The Times
The Times has had several good articles this week about ME and Long Covid:
"Long Covid and chronic fatigue - your questions answered"
Article here (paywalled) Thread here
"Link between long Covid and ME could transform the lives of sufferers"
Article here (paywalled) Thread here
"Sometimes I wish I had cancer instead of ME: at least people would understand it"
Article here (paywalled)
"Will they believe us now? Long Covid offers hope for ME sufferers"
Article here Thread here
"Jennie Jacques on living with ME: 'I am a shadow of my former self physically'"
Article here (Paywalled) OMF reprint (Free) here Thread here
Refinery29 How Long COVID Is Helping Young Women With Chronic Fatigue
"Women who suffer from ME have been dismissed by the medical establishment for decades. Now, many of the symptoms associated with the condition are in the spotlight under a different name: Long COVID". Article includes interviews with Dr. David Strain and Sonya Chowdhury.
Article here Thread here
Frontiers in Neurology A Paradigm for Post-Covid-19 Fatigue Syndrome Analogous to ME/CFS by Angus Mackay
Hypothesis article. "A model for Post-COVID-19 Fatigue Syndrome is provided to stimulate discussion and critical evaluation. Brain-scanning studies, incorporating increasingly sophisticated imaging technology should enable chronic neuroinflammation to be detected, even at a low level, in the finite detail required, thus helping to test this model, while advancing our understanding of Post-COVID-19 Fatigue Syndrome pathophysiology."
Paper here Thread here
Other items of interest
The Conversation "Deciphering the symptoms of long COVID-19 is slow and painstaking - for both sufferers and their physicians by prof. Allison Navis
Article here Thread here
The Naked Scientists "Long COVID: What we now know?"
Podcast here Thread here
BMJ editorial "Long covid clinics should be run as research hubs"
Article here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
Edited: spelling
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
...............
Other news, articles and advocacy
Millions Missing Canada has written a letter addressed to party leaders asking for more federal research funding for ME and a commitment to represent ME patients' concerns. They are asking Canadians to co-sign this letter and spread the word on social media.
Co-sign here Thread here
Solve M.E. has posted public comments on the CDC treatment evidence review and "strongly recommends against the adoption of this review in any format." They have also created an advocacy tool for US residents to contact their member of Congress.
Comments here Thread here
The European ME Coalition (EMEC) published a comprehensive overview of funding sources, biobanks, and networks for scientists interested in studying ME/CFS.
Article here Thread here
..................
Biomedical research
PNAS "Redox imbalance links COVID-19 and ME/CFS" by Bindu D. Paul, Anthony L. Komaroff et al
".. in this review, we summarise the evidence that people with acute COVID-19 and with ME/CFS have biological abnormalities including remix imbalance, systemic inflammation and neuroinflammation, an impaired ability to generate adenosine triphosphate, and a general hypo metabolic state".
Paper here Thread here
Brain, Behaviour, and Immunity Fine mapping of the major histocompability complex (MHC) in ME/CFS suggests involvement of both HLA class I and class II loci by Hajdarevic, Lande, Mella, Fluge et al
"In conclusion, we report, to the best of our knowledge, the first HLA fine mapping study in ME/CFS, in an attempt to address a putative immunologic component of the ME/CFS pathogenesis. We observed independent association signals from the HLA class I and class II regions, which encourage future genetic studies of the MHC in ME/CFS".
First author Riad Hajdarevic has provided a comprehensible summary in the forum thread.
Paper here Thread here
Journal of Clinical Medicine Autoantibodies to Vasoregulative G-protein-Coupled Receptors Correlate with Symptom Severity, Autonomic Dysfunction and Disability in ME/CFS by Freitar, Scheibenbogen et al
"We found levels of most AABs significantly correlated with key symptoms of fatigue and muscle pain in patients with infection-triggered onset. The severity of cognitive impairment correlated with AT1-R- and ETA-R-AAB and severity of gastrointestinal symptoms with alpha1/2-AdR-AAB. In contrast, the patients with non-infection-triggered ME/CFS showed fewer and other correlations."
Paper here Thread here
Thesis "A Cellular Chronic Fatigue" - Dysregulated Mitochondrial Respiratory Function, Metabolic and Signalling Pathways in ME/CFS and the Identification of Blood Cell-Based Biomarkers of Disease - by Daniel Missailidis
"In summation, my research has made significant strides in our mechanistic understanding of ME/CFS by identifying unique, specific defects in mitochondrial function with an accompanying array of compensatory cellular changes. This work has also highlighted multiple promising candidate diagnostic biomarkers.."
Thesis here Thread here
....................
Other research
Psychological medicine
“PRINCE Secondary: transdiagnostic CBT is not effective for persistent physical symptoms” by Tack & Tuller
David Tuller and S4ME forum member Michiel Tack have written a critical commentary on the primary publication of the PRINCE Secondary trial. They argue that cognitive-behavioral therapy (CBT) was not effective for patients with medically unexplained symptoms but that the trial authors presented their findings misleadingly.
Article here Thread here
Clinical Medicine
"Health, Wellbeing, and Prognosis of Australian Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Case-Controlled Follow-Up Study" by Josev et al.
This Australian study followed up on 25 adolescent patients with ME/CFS for a period of approximately 2 years. Although most patients showed significant improvements, 65 percent continued to fulfill ME/CFS diagnostic criteria at follow-up.
Article here Thread here
....................
Coming events
Free Webinar - Beyond the Symptom: The Biology of Fatigue
This two day webinar, organized by the Sleep Research Society and the Neurobiology of Fatigue Working Group of the NIH Blueprint Neuroscience Research Program, with support from the Blueprint Neuroscience Research Program, is scheduled for September 27-28 from 10:00 am to 6:00 PM Eastern time.
Details here Register here Thread here
.....................
Covid-19, Long Covid and ME
The Times
The Times has had several good articles this week about ME and Long Covid:
"Long Covid and chronic fatigue - your questions answered"
Article here (paywalled) Thread here
"Link between long Covid and ME could transform the lives of sufferers"
Article here (paywalled) Thread here
"Sometimes I wish I had cancer instead of ME: at least people would understand it"
Article here (paywalled)
"Will they believe us now? Long Covid offers hope for ME sufferers"
Article here Thread here
"Jennie Jacques on living with ME: 'I am a shadow of my former self physically'"
Article here (Paywalled) OMF reprint (Free) here Thread here
Refinery29 How Long COVID Is Helping Young Women With Chronic Fatigue
"Women who suffer from ME have been dismissed by the medical establishment for decades. Now, many of the symptoms associated with the condition are in the spotlight under a different name: Long COVID". Article includes interviews with Dr. David Strain and Sonya Chowdhury.
Article here Thread here
Frontiers in Neurology A Paradigm for Post-Covid-19 Fatigue Syndrome Analogous to ME/CFS by Angus Mackay
Hypothesis article. "A model for Post-COVID-19 Fatigue Syndrome is provided to stimulate discussion and critical evaluation. Brain-scanning studies, incorporating increasingly sophisticated imaging technology should enable chronic neuroinflammation to be detected, even at a low level, in the finite detail required, thus helping to test this model, while advancing our understanding of Post-COVID-19 Fatigue Syndrome pathophysiology."
Paper here Thread here
Other items of interest
The Conversation "Deciphering the symptoms of long COVID-19 is slow and painstaking - for both sufferers and their physicians by prof. Allison Navis
Article here Thread here
The Naked Scientists "Long COVID: What we now know?"
Podcast here Thread here
BMJ editorial "Long covid clinics should be run as research hubs"
Article here Thread here
......................
S4ME social media: Facebook, Twitter and You Tube
Edited: spelling
Last edited:
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
................
News, articles and advocacy
A Life Hidden The Day I Touched the Sea Again After 30 Years
Another stunning and wise text by Naomi Whittingham on the harsh realities of severe ME and on her reflections as she reconnects with the sea after 30 years apart.
Article here Thread here
University in Bergen Myalgic encephalomyelitis associated with cellular energy strain
Article from the University in Bergen about the latest research from Tronstad, Fluge and Mella on impaired cellular energy metabolism. The article has been picked up by a few different medical news outlets.
Article here Thread here
USA The US ME/CFS Clinician Coalition, headed by Lucinda Bateman, MD, have created a new consensus document, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. This document was published online on August 25 in the Mayo Clinic Proceedings.
Document here Thread here
USA Seven ME/CFS organizations have proposed changes to the International Classification of Diseases (ICD-10-CM) so that the medical system can properly track cases of ME/CFS in the United States. This proposal will be discussed at the upcoming meeting of the NCHS ICD-10-CM Maintenance Committee on September 14-15, 2021.
Press release here Thread here
................
Research
JCI Insight
“A map of metabolic phenotypes in patients with myalgic encephalomyelitis/chronic fatigue syndrome” by Hoel et al.
This Norwegian study conducted metabolomics, lipidomics, and hormone measurements, 83 patients with ME/CFS and 35 healthy controls. ME/CFS patients were divided into three groups characterized by abnormalities lipid and amino acid metabolites. According to the authors, “the observed metabolic effects may be associated with tissue hypoxia caused by an underlying pathology related to an autoimmune mechanism.”
Article here Thread here
Medicina
"An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis" by Hng et al.
44 hospital doctors attending a training event, completed a questionnaire to measure how much they knew about ME and their attitudes towards it. The results showed that few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. Participants recognized a need for further training and indicated a wish to participate in this.
Article here Thread here
...................
Coming events
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
USA: "Listening Session on Proposal for ME/CFS in the ICD-10-CM"
A discussion of the proposal to change disease coding for ME/CFS will be held Thursday, September 2, at 10 AM Pacific Time/1 PM Eastern Time. Registration required.
Register here Thread here
...................
Covid-19, Long Covid and ME
Live science What chronic fatigue syndrome can teach us about 'long COVID'
Interviews with researchers Dr. Avindra Nath who says ME/CFS "has taught us that there are limits to medical knowledge and to medical practice" and Professor Leonard Jason who says "the emergence of long COVID could prompt physicians to take ME/CFS more seriously".
Article here Thread here
The Lawyer's Daily The coming battles over long-haul COVID-19 and long-term disability
Article here Thread here
Hungary: Long Covid-19 in Children
The Hungarian health website Informed, written by doctors for the general public, describes long covid in children and gives ME/CFS and orthostatic hypotension as examples for similar conditions.
Article here (translated in English) Thread here
Interview David Teshome, ME/CFS patient, talks with Leonard Jason about Long COVID and ME/CFS. This session was done as part of an ME/CFS phone peer support group with patients from across the US listening in.
Video here Thread here
....................
S4ME social media: Facebook, Twitter and You Tube
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
................
News, articles and advocacy
A Life Hidden The Day I Touched the Sea Again After 30 Years
Another stunning and wise text by Naomi Whittingham on the harsh realities of severe ME and on her reflections as she reconnects with the sea after 30 years apart.
Article here Thread here
University in Bergen Myalgic encephalomyelitis associated with cellular energy strain
Article from the University in Bergen about the latest research from Tronstad, Fluge and Mella on impaired cellular energy metabolism. The article has been picked up by a few different medical news outlets.
Article here Thread here
USA The US ME/CFS Clinician Coalition, headed by Lucinda Bateman, MD, have created a new consensus document, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. This document was published online on August 25 in the Mayo Clinic Proceedings.
Document here Thread here
USA Seven ME/CFS organizations have proposed changes to the International Classification of Diseases (ICD-10-CM) so that the medical system can properly track cases of ME/CFS in the United States. This proposal will be discussed at the upcoming meeting of the NCHS ICD-10-CM Maintenance Committee on September 14-15, 2021.
Press release here Thread here
................
Research
JCI Insight
“A map of metabolic phenotypes in patients with myalgic encephalomyelitis/chronic fatigue syndrome” by Hoel et al.
This Norwegian study conducted metabolomics, lipidomics, and hormone measurements, 83 patients with ME/CFS and 35 healthy controls. ME/CFS patients were divided into three groups characterized by abnormalities lipid and amino acid metabolites. According to the authors, “the observed metabolic effects may be associated with tissue hypoxia caused by an underlying pathology related to an autoimmune mechanism.”
Article here Thread here
Medicina
"An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis" by Hng et al.
44 hospital doctors attending a training event, completed a questionnaire to measure how much they knew about ME and their attitudes towards it. The results showed that few respondents had any formal teaching on ME, though most had some experience of it. Few knew how to diagnose it and most lacked confidence in managing it. Participants recognized a need for further training and indicated a wish to participate in this.
Article here Thread here
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Coming events
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
USA: "Listening Session on Proposal for ME/CFS in the ICD-10-CM"
A discussion of the proposal to change disease coding for ME/CFS will be held Thursday, September 2, at 10 AM Pacific Time/1 PM Eastern Time. Registration required.
Register here Thread here
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Covid-19, Long Covid and ME
Live science What chronic fatigue syndrome can teach us about 'long COVID'
Interviews with researchers Dr. Avindra Nath who says ME/CFS "has taught us that there are limits to medical knowledge and to medical practice" and Professor Leonard Jason who says "the emergence of long COVID could prompt physicians to take ME/CFS more seriously".
Article here Thread here
The Lawyer's Daily The coming battles over long-haul COVID-19 and long-term disability
Article here Thread here
Hungary: Long Covid-19 in Children
The Hungarian health website Informed, written by doctors for the general public, describes long covid in children and gives ME/CFS and orthostatic hypotension as examples for similar conditions.
Article here (translated in English) Thread here
Interview David Teshome, ME/CFS patient, talks with Leonard Jason about Long COVID and ME/CFS. This session was done as part of an ME/CFS phone peer support group with patients from across the US listening in.
Video here Thread here
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