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News in Brief - April 2021
- Thread starter Trish
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Week beginning 29th March 2021
News and media
Australia Dr Heidi Nicholl is leaving her post as CEO of Emerge Australia after 3 years. 'In acknowledging her exceptional contribution and performance as CEO, Emerge Australia Board Chair, Mark Clisby, highlighted Dr Nicholl's untiring advocacy and drive for improving all aspects of the ME/CFS environment - research, public and health policy, diagnostic and clinical frameworks, access to better and more appropriate services, community education, and above all advice and support for people with ME/CFS and their carers in Australia.'
Announcement here Thread here
UK - NICE ME/CFS guideline delay
The date for publication of the final guideline has been moved from 21st April to 18th August. From an email sent this week to stakeholders: 'Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed.'
Thread here
The Science Bit Excellent lecture given by Prof. Brian Hughes last year titled "Off the PACE and not NICE: Challenges with Evidence in ME/CFS". The lecture was part of a conference organised by Hope 4 ME & Fibro Northern Ireland. Duration: 52 minutes.
Lecture here Thread here
People A big feature article in People's latest edition about ME researcher Ron Davis, his wife Janet Dafoe and their son Whitney Dafoe who suffers from severe ME. The article has a short version of the article online.
Online article here Thread here
Norway The ME Scandal
A critical, detailed and revealing YouTube video in two parts from an anonymous maker about the biopsychosocial approach to ME. The videos have subtitles in English.
Part 1 here (duration 1h 33min) Part 2 here (duration 1h 31min) Thread here
Canada
The ME/FM Society of British Columbia has published a preliminary project examining the unmet needs of people living with ME. 25 patients and 173 clinicians participated.
Survey here Thread here
An Existence Project - Paper Stop motion Animation About ME/CFS
A beautifully done animation on YouTube about living with mild or moderate ME by Inga Topolnicki. Duration: 6 minutes.
Film here Thread here
.........
Biomedical research
Brain, Behavior and Immunity
"Skewing of the B cell receptor repertoire in ME/CFS" by Sato et al.
This Japanese team tested 38 patients, 23 healthy controls and a later validating cohort of 38 patients. They found 'upregulation of specific IGHV genes correlated to infection-related episodes at onset, and plasmablasts upregulated interferon response genes.' The authors suggest 'B cell receptor repertoire analysis can provide a useful diagnostic marker in ME/CFS'.
Paper here Thread here
Preprints not yet peer reviewed.
"Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in ME/CFS: A Randomized, Double-Blind,Placebo-Controlled Trial" by Castro-Marrero et al.
A proof of concept trial over 16 weeks plus 4 weeks post treatment follow up. Oral melatonin plus zinc supplementation (n = 24) or matching placebo (n = 26) once daily. There was a slightly statistically significant improvement in self rated fatigue in the treatment group, but no improvement in physical functioning, sleep and other subjective measures.
Paper here Thread here
MedRxiv not yet peer reviewed
“The SARS-CoV-2 receptor angiotensin-converting enzyme 2 (ACE2) in ME/CFS: analysis of high-throughput genetic, epigenetic, and gene expression studies” by Malato et al.
Studies suggest that the human angiotensin-converting enzyme 2 (ACE2) acts as an important receptor by which coronaviruses are able to invade human host cells. In this preprint, the authors examined the relationship between ACE2 and ME/CFS in existing and new data but they could not find major differences between ME/CFS patients and healthy controls.
Article here Thread here
.........
Other research
Fatigue: Biomedicine, Health & Behavior
“Dissecting the nature of post-exertional malaise” by Hartle et al.
This study reports questionnaire based data on post-exertional malaise (PEM) from 150 ME/CFS patients from the Bateman Horne Center in the US. The results showed that for most patients the onset of PEM starts within hours and that its effects last several days or longer.
Article here Thread here
..........
Coming events
Sweden Lecture by Prof. Jonas Bergquist.
April 6th, 12.00-12.30 Local time. "UppTalk Weekly" is a free seminar series on Zoom by Uppsala University. The lecture is in Swedish and titled (translated): Hope for patients with ME - one of the world's most disabling diseases.
More information here Thread here
UK - Royal Society "Long Covid: an unfolding story"
8th April, 6-7pm UK time on the Royal Society You Tube channel.
'Join Professor Brian Cox as he talks to scientists working at the forefront of research into long Covid, and campaigners with personal experience of the devastating effect it can have on lives.'
Details here Thread here
UK webinar "Energy impairment and disability inclusion"
9th April, 12 - 1 BST, Catherine Hale and Dr Anna Ruddock, discuss the emancipatory disability research of the Chronic Illness Inclusion Project. '...our invisibility as a cohort of disabled people is bound up with systemic disbelief of our experiences. Interrupting this cycle of invisibility and disbelief is key to promoting equality and human rights for people with chronic illness.'
Details here Thread here
...........
Fundraising
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
The goal is $ 60,000 by April 30.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising target is £25,000 to enable him to continue this work.
Details and donation here Thread here
................
Surveys and petition
UK Two surveys on women's health as part of a government consultation. One is from the Department of Health and Social Care. The second is from the Chronic Illness Inclusion Project, and will provide information about health and social care experiences and needs of women with chronic illnesses, including ME/CFS, to inform their submission to the government consultation.
Thread with links here
Switzerland
A Swiss petition asking for more research and improved care for ME/CFS and Long Covid has received more than 1400 signatures.
Petition here Thread here
............
Job opportunities
UK - Two part time Communications and Marketing posts - one for DecodeME and one for Action for ME. Closing date 26th April.
Details here Thread here
.............
In Memory
Dr Jay A. Goldstein
From the AMMES website: 'I was deeply saddened to learn that Dr. Jay Goldstein had passed away on March 4, 2021. Dr. Goldstein was a pioneer among ME/CFS researchers and clinicians. He rose to prominence in the 1990s through his clinical practice, and through the publication of several seminal works [...] Dr. Goldstein will be sorely missed, not just for his tremendous insights but for his compassion and commitment to his patients.'
AMMES article here Thread here (members only)
.............
Covid-19 and ME
Trial by Error by David Tuller "More on that WSJ Opinion Piece; and Q-and-A With Author of this Week's WSJ Rebuttal"
A critical look at a recent opinion piece dismissive of Long Covid in WSJ. The opinion piece received a rebuttal by Yochai Re'em, whom Tuller then did a Q-and-A with.
Article here Thread here
#MEAction Press Telebriefing: M.E. and Long COVID
Recording of a press telebriefing from March 25th. Panelists: Dr. Avindra Nath, Dr. Anthony Komaroff, Dr. Lucinda Bateman, Long hauler Jen and person with ME Ashanti Daniel. Moderator: Jaime Seltzer, Director of Scientific and Medical Outreach at #MEAction.
Video here (duration 1h 3m) Thread here
Sweden Opinion piece in a medical newspaper by the co-chairman of the Swedish patient organisation (RME) Sture Eriksson on similarities between Long Covid and ME. He encourages researchers and clinicians working with Long Covid to familiarise themselves with research, clinical practice and patient organisations from the field of ME.
Opinion piece here Thread here
Other items of interest
The Philadelphia Inquirer "POTS is a mysterious disorder with a striking resemblance to long-haul COVID-19. Pandemic research may provide clues for both"
Article here Thread here
BBC Long Covid: 'It's like someone has piled sandbags on top of me'
Video interview here (Duration: 4 minutes) Thread here
le News "Swiss government commission to look at funding for Long Covid"
Article here Thread here
............
S4ME social media: Facebook, Twitter and You Tube
News and media
Australia Dr Heidi Nicholl is leaving her post as CEO of Emerge Australia after 3 years. 'In acknowledging her exceptional contribution and performance as CEO, Emerge Australia Board Chair, Mark Clisby, highlighted Dr Nicholl's untiring advocacy and drive for improving all aspects of the ME/CFS environment - research, public and health policy, diagnostic and clinical frameworks, access to better and more appropriate services, community education, and above all advice and support for people with ME/CFS and their carers in Australia.'
Announcement here Thread here
UK - NICE ME/CFS guideline delay
The date for publication of the final guideline has been moved from 21st April to 18th August. From an email sent this week to stakeholders: 'Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed.'
Thread here
The Science Bit Excellent lecture given by Prof. Brian Hughes last year titled "Off the PACE and not NICE: Challenges with Evidence in ME/CFS". The lecture was part of a conference organised by Hope 4 ME & Fibro Northern Ireland. Duration: 52 minutes.
Lecture here Thread here
People A big feature article in People's latest edition about ME researcher Ron Davis, his wife Janet Dafoe and their son Whitney Dafoe who suffers from severe ME. The article has a short version of the article online.
Online article here Thread here
Norway The ME Scandal
A critical, detailed and revealing YouTube video in two parts from an anonymous maker about the biopsychosocial approach to ME. The videos have subtitles in English.
Part 1 here (duration 1h 33min) Part 2 here (duration 1h 31min) Thread here
Canada
The ME/FM Society of British Columbia has published a preliminary project examining the unmet needs of people living with ME. 25 patients and 173 clinicians participated.
Survey here Thread here
An Existence Project - Paper Stop motion Animation About ME/CFS
A beautifully done animation on YouTube about living with mild or moderate ME by Inga Topolnicki. Duration: 6 minutes.
Film here Thread here
.........
Biomedical research
Brain, Behavior and Immunity
"Skewing of the B cell receptor repertoire in ME/CFS" by Sato et al.
This Japanese team tested 38 patients, 23 healthy controls and a later validating cohort of 38 patients. They found 'upregulation of specific IGHV genes correlated to infection-related episodes at onset, and plasmablasts upregulated interferon response genes.' The authors suggest 'B cell receptor repertoire analysis can provide a useful diagnostic marker in ME/CFS'.
Paper here Thread here
Preprints not yet peer reviewed.
"Effect of Melatonin Plus Zinc Supplementation on Fatigue Perception in ME/CFS: A Randomized, Double-Blind,Placebo-Controlled Trial" by Castro-Marrero et al.
A proof of concept trial over 16 weeks plus 4 weeks post treatment follow up. Oral melatonin plus zinc supplementation (n = 24) or matching placebo (n = 26) once daily. There was a slightly statistically significant improvement in self rated fatigue in the treatment group, but no improvement in physical functioning, sleep and other subjective measures.
Paper here Thread here
MedRxiv not yet peer reviewed
“The SARS-CoV-2 receptor angiotensin-converting enzyme 2 (ACE2) in ME/CFS: analysis of high-throughput genetic, epigenetic, and gene expression studies” by Malato et al.
Studies suggest that the human angiotensin-converting enzyme 2 (ACE2) acts as an important receptor by which coronaviruses are able to invade human host cells. In this preprint, the authors examined the relationship between ACE2 and ME/CFS in existing and new data but they could not find major differences between ME/CFS patients and healthy controls.
Article here Thread here
.........
Other research
Fatigue: Biomedicine, Health & Behavior
“Dissecting the nature of post-exertional malaise” by Hartle et al.
This study reports questionnaire based data on post-exertional malaise (PEM) from 150 ME/CFS patients from the Bateman Horne Center in the US. The results showed that for most patients the onset of PEM starts within hours and that its effects last several days or longer.
Article here Thread here
..........
Coming events
Sweden Lecture by Prof. Jonas Bergquist.
April 6th, 12.00-12.30 Local time. "UppTalk Weekly" is a free seminar series on Zoom by Uppsala University. The lecture is in Swedish and titled (translated): Hope for patients with ME - one of the world's most disabling diseases.
More information here Thread here
UK - Royal Society "Long Covid: an unfolding story"
8th April, 6-7pm UK time on the Royal Society You Tube channel.
'Join Professor Brian Cox as he talks to scientists working at the forefront of research into long Covid, and campaigners with personal experience of the devastating effect it can have on lives.'
Details here Thread here
UK webinar "Energy impairment and disability inclusion"
9th April, 12 - 1 BST, Catherine Hale and Dr Anna Ruddock, discuss the emancipatory disability research of the Chronic Illness Inclusion Project. '...our invisibility as a cohort of disabled people is bound up with systemic disbelief of our experiences. Interrupting this cycle of invisibility and disbelief is key to promoting equality and human rights for people with chronic illness.'
Details here Thread here
...........
Fundraising
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
The goal is $ 60,000 by April 30.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising target is £25,000 to enable him to continue this work.
Details and donation here Thread here
................
Surveys and petition
UK Two surveys on women's health as part of a government consultation. One is from the Department of Health and Social Care. The second is from the Chronic Illness Inclusion Project, and will provide information about health and social care experiences and needs of women with chronic illnesses, including ME/CFS, to inform their submission to the government consultation.
Thread with links here
Switzerland
A Swiss petition asking for more research and improved care for ME/CFS and Long Covid has received more than 1400 signatures.
Petition here Thread here
............
Job opportunities
UK - Two part time Communications and Marketing posts - one for DecodeME and one for Action for ME. Closing date 26th April.
Details here Thread here
.............
In Memory
Dr Jay A. Goldstein
From the AMMES website: 'I was deeply saddened to learn that Dr. Jay Goldstein had passed away on March 4, 2021. Dr. Goldstein was a pioneer among ME/CFS researchers and clinicians. He rose to prominence in the 1990s through his clinical practice, and through the publication of several seminal works [...] Dr. Goldstein will be sorely missed, not just for his tremendous insights but for his compassion and commitment to his patients.'
AMMES article here Thread here (members only)
.............
Covid-19 and ME
Trial by Error by David Tuller "More on that WSJ Opinion Piece; and Q-and-A With Author of this Week's WSJ Rebuttal"
A critical look at a recent opinion piece dismissive of Long Covid in WSJ. The opinion piece received a rebuttal by Yochai Re'em, whom Tuller then did a Q-and-A with.
Article here Thread here
#MEAction Press Telebriefing: M.E. and Long COVID
Recording of a press telebriefing from March 25th. Panelists: Dr. Avindra Nath, Dr. Anthony Komaroff, Dr. Lucinda Bateman, Long hauler Jen and person with ME Ashanti Daniel. Moderator: Jaime Seltzer, Director of Scientific and Medical Outreach at #MEAction.
Video here (duration 1h 3m) Thread here
Sweden Opinion piece in a medical newspaper by the co-chairman of the Swedish patient organisation (RME) Sture Eriksson on similarities between Long Covid and ME. He encourages researchers and clinicians working with Long Covid to familiarise themselves with research, clinical practice and patient organisations from the field of ME.
Opinion piece here Thread here
Other items of interest
The Philadelphia Inquirer "POTS is a mysterious disorder with a striking resemblance to long-haul COVID-19. Pandemic research may provide clues for both"
Article here Thread here
BBC Long Covid: 'It's like someone has piled sandbags on top of me'
Video interview here (Duration: 4 minutes) Thread here
le News "Swiss government commission to look at funding for Long Covid"
Article here Thread here
............
S4ME social media: Facebook, Twitter and You Tube
Week beginning 5th April 2021 Part 1
News and media
UK - Invest in ME Research The March/April 2021 Newsletter is available. There is a short update on the ongoing preparation for the Restore-ME clinical trial of FMT (fecal microbiota transplant). Also information on this year's colloquium (see below) and on the European ME Alliance.
Newsletter here Thread here
UK Forward ME minutes of the March meeting. Discussion included the next steps for Forward ME now that Lady Mar is stepping aside. Also discussed: CMRC medical education, DecodeME and the NICE guideline.
Minutes here Thread here
Occupy M.E. The Death Threat Myth Exposed
During a recent NIH tele briefing with the ME/CFS community, a story concerning claimed death threats in the past against grant reviewers was used by Dr. Vicky Whittemore as a reason to withhold names of reviewers on the ME/CFS Special Emphasis Panel. Jennie Spotila tracked down the origin of this story, which turned out to be a phone call in 2011 of unknown origin with hearsay rumours. This story has since been repeated and overstated to a great cost for the patient community. Dr. Vicky Whittemore has since offered a sincere apology for having raised the issue.
Article here Thread here
Cornell Center for Enervating Neuroimmune Disease Where do ME/CFS Immune cells get their energy, or ale?
A 3-minute presentation by graduate student Jessica Maya of her thesis where she talks about "ME/CFS, the immune system response, and the fuels that energise immune cells to properly defend the body"
Video here Thread here
Sweden A talk for a general audience organised by Uppsala University with Prof. Jonas Bergquist on ME and current research into the disease. Language: Swedish. Duration: 33 min.
Thread with talk here
Medium How Singer-Songwriter John Prine Helped Me Accept A Life of Illness
A beautifully written essay by Matt Lazell-Fairman who has suffered from ME for 11 years. "I’ve looked for fulfillment in a range of spaces over the years, but always, the costs of being productive are too great for me to persevere. It’s taken me a year to write this essay"
Article here Thread here
hippocampus magazine Salisbury Steak Day
Michelle Strausbaugh receives Meals-on-Wheels and uses the menu as frame for this very well written piece about being a severe ME sufferer living in a housing studio for elderly and disabled.
Article here Thread here
..................
Biomedical research
International Journal of Molecular Sciences
"Insights into Metabolite Diagnostic Biomarkers for ME/CFS" by Yamano et al.
This Japanese team reviewed metabolite studies in animal models of fatigue and in humans with ME/CFS, including their own research, summarising the results. They conclude that the field is still evolving. They believe that 'in future, it will be possible to establish highly precise objective diagnostic biomarkers for ME/CFS...'
Article here Thread here
Diagnostics
"Case report: Angina Simultaneously Diagnosed with the Recurrence of ME/CFS" by Li et al.
The authors report a case of a young woman with angina symptoms during an ME/CFS flare up, and resolved with a calcium channel blocker. They suggest this may be related to endothelial damage in ME/CFS.
Article here Thread here
Internal Medicine
"Could Minocycline be a "Magic Bullet" for the Treatment of ME/CFS?, by Numata
This editorial suggests that the antibiotic Minocycline showed sufficient evidence of efficacy in an unblinded trial to justify a blinded trial with a control group. It is suggested that the drug may help in ME/CFS by inhibiting neuroinflammation.
Article here Thread here
Journal of Clinical Medicine
"Relationship between Cardiopulmonary, Mitochondrial and Autonomic Nervous System Function Improvement after an Individualised Activity Programme upon CFS Patients" by Kujawski et al.
This study of Polish CFS patients (Fukuda criteria) prescribed a structured activity program using heart rate monitoring based on the results of each individual's cardiopulmonary exercise test. There was a high drop out rate due to not being able to complete the CPET or to Post-exertional malaise. The 34 completers out of the 92 enrolled showed some increase in fitness and reduction in fatigue, though most were unable to exercise at their target heart rate. It is not clear whether their ME/CFS improved.
Paper here Thread here
..................
Other research and commentary
Journal of Health Psychology
"Response to Adamson et al. (2020): ‘Cognitive behavioural therapy for chronic fatigue and chronic fatigue syndrome: Outcomes from a specialist clinic in the UK" by Hughes & Tuller.
Prof. Brian Hughes and Dr. David Tuller criticize the paper by Adamson, Wessely, Chalder and colleagues published in the Journal of the Royal Society of Medicine in 2020. The paper argued that cognitive behavioural therapy leads to improvement in ME/CFS patients. Hughes & Tuller, however, argue that the study by Adamson et al. suffered from several methodological limitations, including: sampling ambiguity; weak measurement; survivor bias; missing data and lack of a control group.
Article here Thread here
The authors of the above have also written two additional articles:
"Our response to that controversial study on CBT outcomes in chronic fatigue has now been formally published" by Brian Hughes here
"Journal of Health Psychology Publishes Hughes-Tuller Critique of Wessely-Chalder CBT Claims" by David Tuller here
Health and Social Care
“Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID-19 containment” by Moncorps et al.
This French research team conducted an online survey of how disabled people coped with containment during the corona crisis. Due to strong involvement of French ASFC patients' organization, 93 out of 192 surveys were completed by ME/CFS patients.
Article here Thread here
Journal of Psychosomatic Research
“Guided graded exercise self-help for chronic fatigue syndrome: Long term follow up and cost-effectiveness following the GETSET trial” by Clark et al.
This paper presents the follow-up results of the GETSET trial, a large randomized trial testing guided graded exercise self-help (GES) in ME/CFS. The authors highlight that improvements after GES were maintained at long-term follow-up, although there was no longer a significant difference between the GES group and the control group that received specialist medical care alone.
Article here Thread here
Trial by Error by David Tuller: "GETSET Study Reports Null Results for Self-Help Graded Exercise-but Declares Success Anyway"
On a the above follow-up study by Prof. White et al. on Guided graded exercise self-help (GES) for CFS which showed that the intervention had no benefits over time compared with standard medical care. Still the authors decided in the paper's highlights section to describe the intervention as able to lead to "sustained improvement".
Article here Thread here
..................
Coming events
Body Politic Livestream: Conversation with Dr. Nancy Klimas
Tuesday April 13th at 1 pm PST/4pm EST.
YouTube channel here Thread here
UK Webinar: Centre for Welfare Reform: Improving Policies for Welfare & Work with Energy Limiting Chronic Illness, 27th April 2021.
Details here Thread here
UK Invest in ME Research 10th Biomedical Research into ME Colloquium
will be held on 2-3rd June 2021. This event for researchers will be a virtual event due to the pandemic. The charity has been working with the European ME Research Group to plan the agenda.
Details here Thread here
.......
ME Awareness Month May 2021
#MEAction is organising a week of #MillionsMissing events including 'share your art' and local events from May 9th to 14th with live online events on May 12th.
Details here Thread here
UK ME Association ME Awareness week 10th-16th May. This year the MEA are encouraging members to 'go blue for ME' with activities at home and online.
Article here Thread here
Australia ME Advocacy Network Australia "#MillionsMissing 2021 Be Visible!" Submit by 11th April creative pieces (art, video, song, story etc) that will be featured on the new MEANA website in May.
Article here Thread here
edited to remove duplicate item
..................
Surveys
Action for ME and #MEAction UK have set up a survey for people with ME/CFS who catch Covid-19 to report on their experiences.
Survey here Thread here
Disability Activism in Europe
Researchers from the University of Leeds are conducting a survey on young disabled people’s views and experiences of disability activism across Europe. The survey has been translated into French, German and Spanish and takes approximately 10 to 30 minutes to complete. You have to be 18 to 35 years old to participate.
Survey here Thread here
....................
Fundraising
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
The goal is $ 60,000 by April 30.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising target is £25,000 to enable him to continue this work.
Details and donation here Thread here
.................
In Memory
Dr Ian Gibson The UK charity Invest in ME Research has shared the news that their advisor and friend Dr Ian Gibson has passed away.
IiMER link here Thread here
..................
This week's news continues in the next post.
News and media
UK - Invest in ME Research The March/April 2021 Newsletter is available. There is a short update on the ongoing preparation for the Restore-ME clinical trial of FMT (fecal microbiota transplant). Also information on this year's colloquium (see below) and on the European ME Alliance.
Newsletter here Thread here
UK Forward ME minutes of the March meeting. Discussion included the next steps for Forward ME now that Lady Mar is stepping aside. Also discussed: CMRC medical education, DecodeME and the NICE guideline.
Minutes here Thread here
Occupy M.E. The Death Threat Myth Exposed
During a recent NIH tele briefing with the ME/CFS community, a story concerning claimed death threats in the past against grant reviewers was used by Dr. Vicky Whittemore as a reason to withhold names of reviewers on the ME/CFS Special Emphasis Panel. Jennie Spotila tracked down the origin of this story, which turned out to be a phone call in 2011 of unknown origin with hearsay rumours. This story has since been repeated and overstated to a great cost for the patient community. Dr. Vicky Whittemore has since offered a sincere apology for having raised the issue.
Article here Thread here
Cornell Center for Enervating Neuroimmune Disease Where do ME/CFS Immune cells get their energy, or ale?
A 3-minute presentation by graduate student Jessica Maya of her thesis where she talks about "ME/CFS, the immune system response, and the fuels that energise immune cells to properly defend the body"
Video here Thread here
Sweden A talk for a general audience organised by Uppsala University with Prof. Jonas Bergquist on ME and current research into the disease. Language: Swedish. Duration: 33 min.
Thread with talk here
Medium How Singer-Songwriter John Prine Helped Me Accept A Life of Illness
A beautifully written essay by Matt Lazell-Fairman who has suffered from ME for 11 years. "I’ve looked for fulfillment in a range of spaces over the years, but always, the costs of being productive are too great for me to persevere. It’s taken me a year to write this essay"
Article here Thread here
hippocampus magazine Salisbury Steak Day
Michelle Strausbaugh receives Meals-on-Wheels and uses the menu as frame for this very well written piece about being a severe ME sufferer living in a housing studio for elderly and disabled.
Article here Thread here
..................
Biomedical research
International Journal of Molecular Sciences
"Insights into Metabolite Diagnostic Biomarkers for ME/CFS" by Yamano et al.
This Japanese team reviewed metabolite studies in animal models of fatigue and in humans with ME/CFS, including their own research, summarising the results. They conclude that the field is still evolving. They believe that 'in future, it will be possible to establish highly precise objective diagnostic biomarkers for ME/CFS...'
Article here Thread here
Diagnostics
"Case report: Angina Simultaneously Diagnosed with the Recurrence of ME/CFS" by Li et al.
The authors report a case of a young woman with angina symptoms during an ME/CFS flare up, and resolved with a calcium channel blocker. They suggest this may be related to endothelial damage in ME/CFS.
Article here Thread here
Internal Medicine
"Could Minocycline be a "Magic Bullet" for the Treatment of ME/CFS?, by Numata
This editorial suggests that the antibiotic Minocycline showed sufficient evidence of efficacy in an unblinded trial to justify a blinded trial with a control group. It is suggested that the drug may help in ME/CFS by inhibiting neuroinflammation.
Article here Thread here
Journal of Clinical Medicine
"Relationship between Cardiopulmonary, Mitochondrial and Autonomic Nervous System Function Improvement after an Individualised Activity Programme upon CFS Patients" by Kujawski et al.
This study of Polish CFS patients (Fukuda criteria) prescribed a structured activity program using heart rate monitoring based on the results of each individual's cardiopulmonary exercise test. There was a high drop out rate due to not being able to complete the CPET or to Post-exertional malaise. The 34 completers out of the 92 enrolled showed some increase in fitness and reduction in fatigue, though most were unable to exercise at their target heart rate. It is not clear whether their ME/CFS improved.
Paper here Thread here
..................
Other research and commentary
Journal of Health Psychology
"Response to Adamson et al. (2020): ‘Cognitive behavioural therapy for chronic fatigue and chronic fatigue syndrome: Outcomes from a specialist clinic in the UK" by Hughes & Tuller.
Prof. Brian Hughes and Dr. David Tuller criticize the paper by Adamson, Wessely, Chalder and colleagues published in the Journal of the Royal Society of Medicine in 2020. The paper argued that cognitive behavioural therapy leads to improvement in ME/CFS patients. Hughes & Tuller, however, argue that the study by Adamson et al. suffered from several methodological limitations, including: sampling ambiguity; weak measurement; survivor bias; missing data and lack of a control group.
Article here Thread here
The authors of the above have also written two additional articles:
"Our response to that controversial study on CBT outcomes in chronic fatigue has now been formally published" by Brian Hughes here
"Journal of Health Psychology Publishes Hughes-Tuller Critique of Wessely-Chalder CBT Claims" by David Tuller here
Health and Social Care
“Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID-19 containment” by Moncorps et al.
This French research team conducted an online survey of how disabled people coped with containment during the corona crisis. Due to strong involvement of French ASFC patients' organization, 93 out of 192 surveys were completed by ME/CFS patients.
Article here Thread here
Journal of Psychosomatic Research
“Guided graded exercise self-help for chronic fatigue syndrome: Long term follow up and cost-effectiveness following the GETSET trial” by Clark et al.
This paper presents the follow-up results of the GETSET trial, a large randomized trial testing guided graded exercise self-help (GES) in ME/CFS. The authors highlight that improvements after GES were maintained at long-term follow-up, although there was no longer a significant difference between the GES group and the control group that received specialist medical care alone.
Article here Thread here
Trial by Error by David Tuller: "GETSET Study Reports Null Results for Self-Help Graded Exercise-but Declares Success Anyway"
On a the above follow-up study by Prof. White et al. on Guided graded exercise self-help (GES) for CFS which showed that the intervention had no benefits over time compared with standard medical care. Still the authors decided in the paper's highlights section to describe the intervention as able to lead to "sustained improvement".
Article here Thread here
..................
Coming events
Body Politic Livestream: Conversation with Dr. Nancy Klimas
Tuesday April 13th at 1 pm PST/4pm EST.
YouTube channel here Thread here
UK Webinar: Centre for Welfare Reform: Improving Policies for Welfare & Work with Energy Limiting Chronic Illness, 27th April 2021.
Details here Thread here
UK Invest in ME Research 10th Biomedical Research into ME Colloquium
will be held on 2-3rd June 2021. This event for researchers will be a virtual event due to the pandemic. The charity has been working with the European ME Research Group to plan the agenda.
Details here Thread here
.......
ME Awareness Month May 2021
#MEAction is organising a week of #MillionsMissing events including 'share your art' and local events from May 9th to 14th with live online events on May 12th.
Details here Thread here
UK ME Association ME Awareness week 10th-16th May. This year the MEA are encouraging members to 'go blue for ME' with activities at home and online.
Article here Thread here
Australia ME Advocacy Network Australia "#MillionsMissing 2021 Be Visible!" Submit by 11th April creative pieces (art, video, song, story etc) that will be featured on the new MEANA website in May.
Article here Thread here
edited to remove duplicate item
..................
Surveys
Action for ME and #MEAction UK have set up a survey for people with ME/CFS who catch Covid-19 to report on their experiences.
Survey here Thread here
Disability Activism in Europe
Researchers from the University of Leeds are conducting a survey on young disabled people’s views and experiences of disability activism across Europe. The survey has been translated into French, German and Spanish and takes approximately 10 to 30 minutes to complete. You have to be 18 to 35 years old to participate.
Survey here Thread here
....................
Fundraising
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
The goal is $ 60,000 by April 30.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising target is £25,000 to enable him to continue this work.
Details and donation here Thread here
.................
In Memory
Dr Ian Gibson The UK charity Invest in ME Research has shared the news that their advisor and friend Dr Ian Gibson has passed away.
IiMER link here Thread here
..................
This week's news continues in the next post.
Last edited:
Week beginning 5th April 2021 Part 2
Other news
UK NICE on tiredness/fatigue
A parliamentary question has drawn attention to NICE 'Health topics' which are separate from, but refer to, its guidelines for specific diseases. The topic 'Tiredness/Fatigue in Adults' was updated in March 2020, refers to the 2007 CFS/ME guideline, and recommends CBT/GET.
NICE link here Thread here
UK NICE on pain
Published this week: "Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain". The section headed 'Managing chronic primary pain' (pain without a known cause) recommends exercise, psychological therapies, acupuncture and antidepressant medications. It recommends against other medications including analgesics. Forum discussion includes concern that the evidence is weak, based on unblinded trials with subjective outcomes.
NICE link here Guardian article here Thread here
...................
Covid-19 and ME
UK BBC TV Newsnight program ran an unbalanced 10 minute segment on Long Covid which featured Prof Paul Garner repeating his claims that he recovered from long Covid by increasing exercise and positive thinking, reinforced by a doctor running a post covid clinic who recommended graded exercise. ME was characterised as a controversial field with militant patients, and Dr Shepherd's 15 minute interview was reduced to a couple of tiny clips.
Thread with discussion here
Physios for ME have two poster presentations at the World Physio Congress this weekend 'to educate physios on the implications of post viral fatigue syndrome and ME during the Covid-19 pandemic'.
Tweets here Thread here
Vaccination A forum thread has been set up for sharing information on whether people with ME/CFS in different countries are given priority for receiving the Sars-Cov2 vaccine. All report so far that ME/CFS is not on official priority lists. In some countries GP's can allocate individual patients to priority groups.
Thread here
Social Science Space Fear of Listening to Patients: Short-sighted on Long Covid
A good rebuttal by law professor Steven Lubet of a recent op-ed in WSJ which was dismissive of Long Covid and related illnesses.
Article here
Lubet's article has been reposted with comments by David Tuller here and Brian Hughes here
Trial by Error by David Tuller "Long COVID, the long COVID Alliance, and ME International
About the Long Covid Alliance where 50 organisations have gone together to increase knowledge of Long Covid and related post-infectious diseases like ME. Tuller also shares a recent open letter from ME-International on pros and cons they've considered before deciding to become part of the Long Covid Alliance.
Article here Thread here
The Long Covid Alliance meeting this week included items on a USA advocacy day on April 19 and a response from the NIH to their letter asking for a meeting. Working groups are being set up by the alliance.
Thread with meeting notes here
Solve M.E. The Link Between ME/CFS and Long Covid
"White House Chronicle host Llewellyn King and Solve M.E. President Oved Amitay talk about Long Covid and its relationship to ME/CFS, and the government role in research." Duration: 30 minutes.
YouTube video here Thread here
.............
Expert Forum on secondary COVID-19 impacts Michael Sharpe recently gave a talk about Long Haulers and chronic fatigue at a conference hosted by the insurance company Swiss Re Group. In his presentation, Professor Sharpe controversially argues that online support groups and journalists highlighting the severity of long covid may hamper revalidation and recovery.
Talk here Thread here
Brian Hughes has gone through the slides of the talk and provides comments in his article "All Aboard the long COVID gravy train" here
David Tuller has also commented in his article "Guardian Columnist George Monbiot Is Causing Long COVID, Says Professor Michael Sharpe" here
This led to another article by Tuller titled "Prof Sharpe Fact-Checks Comment on Blog About How George Monbiot Is Causing Long COVID" here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
Other news
UK NICE on tiredness/fatigue
A parliamentary question has drawn attention to NICE 'Health topics' which are separate from, but refer to, its guidelines for specific diseases. The topic 'Tiredness/Fatigue in Adults' was updated in March 2020, refers to the 2007 CFS/ME guideline, and recommends CBT/GET.
NICE link here Thread here
UK NICE on pain
Published this week: "Chronic pain (primary and secondary) in over 16s: assessment of all chronic pain and management of chronic primary pain". The section headed 'Managing chronic primary pain' (pain without a known cause) recommends exercise, psychological therapies, acupuncture and antidepressant medications. It recommends against other medications including analgesics. Forum discussion includes concern that the evidence is weak, based on unblinded trials with subjective outcomes.
NICE link here Guardian article here Thread here
...................
Covid-19 and ME
UK BBC TV Newsnight program ran an unbalanced 10 minute segment on Long Covid which featured Prof Paul Garner repeating his claims that he recovered from long Covid by increasing exercise and positive thinking, reinforced by a doctor running a post covid clinic who recommended graded exercise. ME was characterised as a controversial field with militant patients, and Dr Shepherd's 15 minute interview was reduced to a couple of tiny clips.
Thread with discussion here
Physios for ME have two poster presentations at the World Physio Congress this weekend 'to educate physios on the implications of post viral fatigue syndrome and ME during the Covid-19 pandemic'.
Tweets here Thread here
Vaccination A forum thread has been set up for sharing information on whether people with ME/CFS in different countries are given priority for receiving the Sars-Cov2 vaccine. All report so far that ME/CFS is not on official priority lists. In some countries GP's can allocate individual patients to priority groups.
Thread here
Social Science Space Fear of Listening to Patients: Short-sighted on Long Covid
A good rebuttal by law professor Steven Lubet of a recent op-ed in WSJ which was dismissive of Long Covid and related illnesses.
Article here
Lubet's article has been reposted with comments by David Tuller here and Brian Hughes here
Trial by Error by David Tuller "Long COVID, the long COVID Alliance, and ME International
About the Long Covid Alliance where 50 organisations have gone together to increase knowledge of Long Covid and related post-infectious diseases like ME. Tuller also shares a recent open letter from ME-International on pros and cons they've considered before deciding to become part of the Long Covid Alliance.
Article here Thread here
The Long Covid Alliance meeting this week included items on a USA advocacy day on April 19 and a response from the NIH to their letter asking for a meeting. Working groups are being set up by the alliance.
Thread with meeting notes here
Solve M.E. The Link Between ME/CFS and Long Covid
"White House Chronicle host Llewellyn King and Solve M.E. President Oved Amitay talk about Long Covid and its relationship to ME/CFS, and the government role in research." Duration: 30 minutes.
YouTube video here Thread here
.............
Expert Forum on secondary COVID-19 impacts Michael Sharpe recently gave a talk about Long Haulers and chronic fatigue at a conference hosted by the insurance company Swiss Re Group. In his presentation, Professor Sharpe controversially argues that online support groups and journalists highlighting the severity of long covid may hamper revalidation and recovery.
Talk here Thread here
Brian Hughes has gone through the slides of the talk and provides comments in his article "All Aboard the long COVID gravy train" here
David Tuller has also commented in his article "Guardian Columnist George Monbiot Is Causing Long COVID, Says Professor Michael Sharpe" here
This led to another article by Tuller titled "Prof Sharpe Fact-Checks Comment on Blog About How George Monbiot Is Causing Long COVID" here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
Week beginning 12th April 2021
News
#MEAction Announce that Julia Miele has been appointed their new Executive Director.
Announcement here Thread here
Australia ME/CFS researcher Daniel Missailidis has won the people's choice award in the National Protective Services Health and Wellbeing Award category in the Young Achievers Awards, 2021.
Thread with link here
...............
In the media
UK - Guardian "Apparently just by talking about it, I’m super-spreading long Covid" by George Monbiot
Monbiot describes Prof Michael Sharpe's Swiss Re talk in which he 'suggested that press coverage could make people believe they have the condition' and that “the best treatment is psychologically informed rehabilitation”. When asked by Monbiot, Sharpe provided no scientific basis for this.
'Until now, I’d never heard of Michael Sharpe. But as I began to investigate, I stumbled into one of the most astonishing scientific stories I’ve ever encountered.' Monbiot succinctly and accurately reports the PACE story. 'There seems to be a strong case for the retraction of the Pace trial papers. In 2019, Sharpe did reflect on Pace’s scientific processes, but doubled down on its conclusions. [...] Now he seems to have transferred his claims about treatments for ME/CFS to long Covid.'
Article here Thread here
Twitter Monbiot expands on the PACE story on Twitter, including the harassment claims. 'A great injustice has been done to patients already suffering grievously from a terrible condition. [...] They’ve been treated as scroungers and malingerers. In other words, the scientific mistakes were highly consequential.' He has also addressed the issue in a 5 minute video.
Twitter thread here Video here
Guardian letters "Analysing long Covid and managing anxiety" by Prof Michael Sharpe in which he responds to Monbiot's comments on Swiss Re talk and claims (wrongly) that the criticisms of PACE had been 'investigated and refuted' by the MRC and HRA. Prof Garner's letter repeats his personal anecdote.
Letters here Thread here
...............
Articles and videos
ME/CFS Alert Episode 125 Interview with Dr. Nina Muirhead
Llewellyn King talks to surgeon, advocate and ME patient Nina Muirhead about her personal experience with ME and how this has led her to develop an online learning module for doctors on the subject. Duration: 25 minutes.
YouTube video here Thread here
Norway Article in the Journal of the Norwegian Nurses Organisation about an out-patient clinic for HIV and ME run by patients.
Article here Thread here
A Life Hidden Emily at 40: In Celebration and Sorrow
A moving tribute from Naomi Whittingham to her friend Emily Collingridge. Emily would have turned 40 this week, but passed away of severe ME at the age of 30.
Article here Thread here
M.E. myself and I How baffling that I'm happy with my lot
Blog post by Anna Redshaw on finding happiness also with a chronic illness.
Article here Thread here
A journey through the fog How the World Became More Accessible During the Covid-19 Pandemic
Jo Moss provides many good examples of how the pandemic has made society more accessible for disabled people and pleads this will continue also when things start returning back to normal.
Article here Thread here
............
Trial by Error by David Tuller
"Jennie Spotila Tracks Down - and Busts - an Old Tale About "Death Threats" from Patients"
Repost of Jennie Spotila's article from last week where she found the origin of rumours concerning claimed death threats by ME advocates.
Article here Thread here
"The World According to Sharpe"
On how the media coverage on ME and the PACE trial is changing for the better, sometimes due to own goals scored by Michael Sharpe.
Article here Thread here
"A Letter to Psychological Medicine about Error in MUS Paper from Sir Simon and Colleagues"
Tuller has written a letter to the editors-in-chief of the journal Psychological Medicine concerning a paper they've published with the usage of a misstated and exaggerated claim regarding the NIH costs of medically unexplained symptoms.
Article here Thread here
"My Letter to Professor Anthony David Asks Why MUS Experts Keep Misquoting a Major Study"
A series of pertinent questions to a coauthor of the papers noted above. These include: 'If thought leaders in this domain can spend years collectively misquoting a seminal paper in their area of expertise, should that raise concerns about their overall scientific literacy and about whether they are basing other assertions about MUS on similarly distorted, misunderstood or biased data?'
Article here Thread here
...........
Biomedical news and research
DecodeME April webinar is now available. Chris Ponting describes how the data and samples will be collected, processed and analysed; Sadie Whittaker of Solve ME describes their You + ME registry which will provide the infrastructure for DecodeME questionnaires; and Andy Devereux-Cooke describes patient and carer involvement in all aspects of project planning. There will be another webinar next week to answer more questions.
Video here (38 minutes) Thread here
Preprint
"No signs of neuroinflammation in women with [CFS] or Q fever fatigue syndrome using the TSPO ligand [11C]-PK11195" by Raijmakers, Knoop et al.
A very small study used PET scans on women: 9 with CFS (Fukuda criteria), 10 QFFS and 9 healthy controls, found some correlations with severity levels but no between group differences.
Article here Thread here
.............
Other research and commentary
The Faculty Lounge
What's Going on at the Journal of the Royal Society of Medicine?
Steve Lubet on a recent critical article from Hughes/Tuller about a study on CBT outcomes in CFS. "In sum, the Tuller and Hughes experience exposes a major pitfall in academic publishing about ME/CFS, in which old school eminences are able to push weak and contradictory studies, while entrenched journals resist even considering contrary viewpoints."
Article here Thread here
Healthcare
"Life-Threatening Malnutrition in Very Severe ME/CFS" by Baxter et al.
The authors present five case studies of patients with very severe ME who required tube feeding. In all cases, there was a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished.
Article here Thread here
Journal of Preventive Medicine & Healthcare
“A Comparison of Patients with CFS and ME from the United States and Japan” by Wiedbusch et al.
The research team of Leonard Jason compared ME/CFS patients in the US and Japan. The former had a larger proportion of women and more were on disability compared to the Japanese sample.
Article here Thread here
Archives of Disease in Childhood
"Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison" by Moore et al.
The research team of Esther Crawley conducted a systematic review on recovery in paediatric ME/CFS. The authors found 12 relevant papers but conclude that “definitions of recovery are highly variable” and that “recovery is probably best defined from the child’s own perspective with a single self-reported measure.”
Article here Thread here
Frontiers in Psychiatry
“Cognitive Behavioral Therapy Improves Physical Function and Fatigue in Mild and Moderate CFS: A Consecutive Randomized Controlled Trial of Standard and Short Interventions” by Gotaas et al.
The Norwegian authors report the results of a randomized trial where CBT and interpersonal oriented CBT improved physical function and fatigue scores in ME/CFS patients. Both intervention, however, were only compared to a waiting-list control group, not an active control group. Forum members have noted several other issues with the paper.
Article here Thread here
Medicina
“The Role of Prevention in Reducing the Economic Impact of ME/CFS in Europe: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE) by Pheby et al.
This European review concludes there is little scope for prevention programmes on ME/CFS because little is known about risk factors of ME/CFS. One exception may be the use of agricultural chemicals, particularly organophosphates.
Article here Thread here
..............
Coming events
Solve ME/CFS 5th Annual Solve M.E. Advocacy Week
Virtual event taking place 18th - 24th April 2021. Program includes: Congressional Meeting Training, Advocacy Day, Social Media Action Day, EmPOWER M.E. Roundtable and more.
More information and full program here Thread here
ME Awareness Month May 2021
Germany MillionsMissing Germany is organizing a campaign for the international ME/CFS day on 12 May where they ask people to send postcards to the presidents of the state parliaments. The campaign is supported by all German patient organizations.
Article here Thread here
................
Fundraising
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff. The goal is $60,000 by April 30.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University. The fundraising target is £25,000 to enable him to continue this work.
Details and donation here Thread here
................
Covid-19 and ME
TIME Black Women Are Fighting to Be Recognized as Long COVID Patients
Important article about black female Long COVID patients fighting for recognition of their chronic disease together with allies like advocates Wilhelmina Jenkins and Ashanti Daniel from the ME/CFS community.
Article here Thread here
Science Friday What Does The Future Look Like For COVID-19 Long-Haulers?
Interview with Walter Koroshetz from NIH and David Putrino from Mount Sinai, New York. Koroshetz says research into Long Covid "could also have a tremendous effect on the people who are suffering with ME/CFS". Duration: 37 minutes. Transcript included.
Interview here Thread here
Inside Sources Psychiatrist Would Abandon Research on Long COVID and Chronic Fatigue Syndrome
A great rebuttal by Llewellyn King to an op-ed in Wall Street Journal which was dismissive of Long Covid, ME and their sufferers.
Article here Thread here
VOX Scientists haven't figured out long Covid. Here are 5 of their best hypothesis
Feature article and podcast episode on hypothesis concerning Long Covid, historical background for "medically unexplained symptoms" and post infectious diseases as ME. Interviews with, among others, microbiologist Amy Proal.
Article here Podcast here Thread here
UK Guardian "As the UK inches towards normality, those with long Covid must not be forgotten" by Frances Ryan
'As the conversation around long Covid grows, we must ensure any help that comes is offered to those with all chronic illnesses.'
Article here Thread here
Other items of interest
Der Standard Long Covid: Die Krankheit nach der Krankheit
Article here Thread here
Science How scientists are teasing apart the biology of Long COVID
Article here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
News
#MEAction Announce that Julia Miele has been appointed their new Executive Director.
Announcement here Thread here
Australia ME/CFS researcher Daniel Missailidis has won the people's choice award in the National Protective Services Health and Wellbeing Award category in the Young Achievers Awards, 2021.
Thread with link here
...............
In the media
UK - Guardian "Apparently just by talking about it, I’m super-spreading long Covid" by George Monbiot
Monbiot describes Prof Michael Sharpe's Swiss Re talk in which he 'suggested that press coverage could make people believe they have the condition' and that “the best treatment is psychologically informed rehabilitation”. When asked by Monbiot, Sharpe provided no scientific basis for this.
'Until now, I’d never heard of Michael Sharpe. But as I began to investigate, I stumbled into one of the most astonishing scientific stories I’ve ever encountered.' Monbiot succinctly and accurately reports the PACE story. 'There seems to be a strong case for the retraction of the Pace trial papers. In 2019, Sharpe did reflect on Pace’s scientific processes, but doubled down on its conclusions. [...] Now he seems to have transferred his claims about treatments for ME/CFS to long Covid.'
Article here Thread here
Twitter Monbiot expands on the PACE story on Twitter, including the harassment claims. 'A great injustice has been done to patients already suffering grievously from a terrible condition. [...] They’ve been treated as scroungers and malingerers. In other words, the scientific mistakes were highly consequential.' He has also addressed the issue in a 5 minute video.
Twitter thread here Video here
Guardian letters "Analysing long Covid and managing anxiety" by Prof Michael Sharpe in which he responds to Monbiot's comments on Swiss Re talk and claims (wrongly) that the criticisms of PACE had been 'investigated and refuted' by the MRC and HRA. Prof Garner's letter repeats his personal anecdote.
Letters here Thread here
...............
Articles and videos
ME/CFS Alert Episode 125 Interview with Dr. Nina Muirhead
Llewellyn King talks to surgeon, advocate and ME patient Nina Muirhead about her personal experience with ME and how this has led her to develop an online learning module for doctors on the subject. Duration: 25 minutes.
YouTube video here Thread here
Norway Article in the Journal of the Norwegian Nurses Organisation about an out-patient clinic for HIV and ME run by patients.
Article here Thread here
A Life Hidden Emily at 40: In Celebration and Sorrow
A moving tribute from Naomi Whittingham to her friend Emily Collingridge. Emily would have turned 40 this week, but passed away of severe ME at the age of 30.
Article here Thread here
M.E. myself and I How baffling that I'm happy with my lot
Blog post by Anna Redshaw on finding happiness also with a chronic illness.
Article here Thread here
A journey through the fog How the World Became More Accessible During the Covid-19 Pandemic
Jo Moss provides many good examples of how the pandemic has made society more accessible for disabled people and pleads this will continue also when things start returning back to normal.
Article here Thread here
............
Trial by Error by David Tuller
"Jennie Spotila Tracks Down - and Busts - an Old Tale About "Death Threats" from Patients"
Repost of Jennie Spotila's article from last week where she found the origin of rumours concerning claimed death threats by ME advocates.
Article here Thread here
"The World According to Sharpe"
On how the media coverage on ME and the PACE trial is changing for the better, sometimes due to own goals scored by Michael Sharpe.
Article here Thread here
"A Letter to Psychological Medicine about Error in MUS Paper from Sir Simon and Colleagues"
Tuller has written a letter to the editors-in-chief of the journal Psychological Medicine concerning a paper they've published with the usage of a misstated and exaggerated claim regarding the NIH costs of medically unexplained symptoms.
Article here Thread here
"My Letter to Professor Anthony David Asks Why MUS Experts Keep Misquoting a Major Study"
A series of pertinent questions to a coauthor of the papers noted above. These include: 'If thought leaders in this domain can spend years collectively misquoting a seminal paper in their area of expertise, should that raise concerns about their overall scientific literacy and about whether they are basing other assertions about MUS on similarly distorted, misunderstood or biased data?'
Article here Thread here
...........
Biomedical news and research
DecodeME April webinar is now available. Chris Ponting describes how the data and samples will be collected, processed and analysed; Sadie Whittaker of Solve ME describes their You + ME registry which will provide the infrastructure for DecodeME questionnaires; and Andy Devereux-Cooke describes patient and carer involvement in all aspects of project planning. There will be another webinar next week to answer more questions.
Video here (38 minutes) Thread here
Preprint
"No signs of neuroinflammation in women with [CFS] or Q fever fatigue syndrome using the TSPO ligand [11C]-PK11195" by Raijmakers, Knoop et al.
A very small study used PET scans on women: 9 with CFS (Fukuda criteria), 10 QFFS and 9 healthy controls, found some correlations with severity levels but no between group differences.
Article here Thread here
.............
Other research and commentary
The Faculty Lounge
What's Going on at the Journal of the Royal Society of Medicine?
Steve Lubet on a recent critical article from Hughes/Tuller about a study on CBT outcomes in CFS. "In sum, the Tuller and Hughes experience exposes a major pitfall in academic publishing about ME/CFS, in which old school eminences are able to push weak and contradictory studies, while entrenched journals resist even considering contrary viewpoints."
Article here Thread here
Healthcare
"Life-Threatening Malnutrition in Very Severe ME/CFS" by Baxter et al.
The authors present five case studies of patients with very severe ME who required tube feeding. In all cases, there was a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished.
Article here Thread here
Journal of Preventive Medicine & Healthcare
“A Comparison of Patients with CFS and ME from the United States and Japan” by Wiedbusch et al.
The research team of Leonard Jason compared ME/CFS patients in the US and Japan. The former had a larger proportion of women and more were on disability compared to the Japanese sample.
Article here Thread here
Archives of Disease in Childhood
"Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison" by Moore et al.
The research team of Esther Crawley conducted a systematic review on recovery in paediatric ME/CFS. The authors found 12 relevant papers but conclude that “definitions of recovery are highly variable” and that “recovery is probably best defined from the child’s own perspective with a single self-reported measure.”
Article here Thread here
Frontiers in Psychiatry
“Cognitive Behavioral Therapy Improves Physical Function and Fatigue in Mild and Moderate CFS: A Consecutive Randomized Controlled Trial of Standard and Short Interventions” by Gotaas et al.
The Norwegian authors report the results of a randomized trial where CBT and interpersonal oriented CBT improved physical function and fatigue scores in ME/CFS patients. Both intervention, however, were only compared to a waiting-list control group, not an active control group. Forum members have noted several other issues with the paper.
Article here Thread here
Medicina
“The Role of Prevention in Reducing the Economic Impact of ME/CFS in Europe: A Report from the Socioeconomics Working Group of the European Network on ME/CFS (EUROMENE) by Pheby et al.
This European review concludes there is little scope for prevention programmes on ME/CFS because little is known about risk factors of ME/CFS. One exception may be the use of agricultural chemicals, particularly organophosphates.
Article here Thread here
..............
Coming events
Solve ME/CFS 5th Annual Solve M.E. Advocacy Week
Virtual event taking place 18th - 24th April 2021. Program includes: Congressional Meeting Training, Advocacy Day, Social Media Action Day, EmPOWER M.E. Roundtable and more.
More information and full program here Thread here
ME Awareness Month May 2021
Germany MillionsMissing Germany is organizing a campaign for the international ME/CFS day on 12 May where they ask people to send postcards to the presidents of the state parliaments. The campaign is supported by all German patient organizations.
Article here Thread here
................
Fundraising
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff. The goal is $60,000 by April 30.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University. The fundraising target is £25,000 to enable him to continue this work.
Details and donation here Thread here
................
Covid-19 and ME
TIME Black Women Are Fighting to Be Recognized as Long COVID Patients
Important article about black female Long COVID patients fighting for recognition of their chronic disease together with allies like advocates Wilhelmina Jenkins and Ashanti Daniel from the ME/CFS community.
Article here Thread here
Science Friday What Does The Future Look Like For COVID-19 Long-Haulers?
Interview with Walter Koroshetz from NIH and David Putrino from Mount Sinai, New York. Koroshetz says research into Long Covid "could also have a tremendous effect on the people who are suffering with ME/CFS". Duration: 37 minutes. Transcript included.
Interview here Thread here
Inside Sources Psychiatrist Would Abandon Research on Long COVID and Chronic Fatigue Syndrome
A great rebuttal by Llewellyn King to an op-ed in Wall Street Journal which was dismissive of Long Covid, ME and their sufferers.
Article here Thread here
VOX Scientists haven't figured out long Covid. Here are 5 of their best hypothesis
Feature article and podcast episode on hypothesis concerning Long Covid, historical background for "medically unexplained symptoms" and post infectious diseases as ME. Interviews with, among others, microbiologist Amy Proal.
Article here Podcast here Thread here
UK Guardian "As the UK inches towards normality, those with long Covid must not be forgotten" by Frances Ryan
'As the conversation around long Covid grows, we must ensure any help that comes is offered to those with all chronic illnesses.'
Article here Thread here
Other items of interest
Der Standard Long Covid: Die Krankheit nach der Krankheit
Article here Thread here
Science How scientists are teasing apart the biology of Long COVID
Article here Thread here
................
S4ME social media: Facebook, Twitter and You Tube
Last edited:
Week beginning 19th April 2021
Part 1 - see next post for part 2.
.............
Fundraising
Last few days - both appeals ending on Friday 30th April
(edited on Monday to add Keith's appeal. Apologies, I hadn't realised it was ending this week too).
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
So far, with 5 days to go, donations have reached $46,000 of the $60,000 target.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising is to enable him to continue this work, including writing up papers: 'One is on how CBT trials are open to bias and manipulation & another is on how "good evidence" isn't always that good!' (quoted from a tweet).
With 4 days to go, £15,700 of the £25,000 target has been donated so far.
Details and donation here Thread here
................
News, articles and videos
UK Priority Setting Partnership
"Your idea could change the future of ME/CFS research".
'We ask you - people with ME/CFS, carers and healthcare professionals - to tell us the questions that you think research should answer. This will be through an online or paper based survey.' This first stage in a process to identify 10 top research priorities for ME/CFS is open until 5th July 2021. The survey is only open to UK residents, but there is a forum thread where members worldwide are invited to share ideas for submission.
Details and survey here Thread here Thread to discuss ideas here
United States
The US ME/CFS Clinician Coalition has published recommendations for ME/CFS treatment and testing. These are intended as general guidance for medical providers and cannot be used as a substitute for clinical care by a physician. Forum discussion includes concern that some recommendations do not have research evidence to support their use as treatments for ME/CFS.
Article here Thread here
Solve M.E. Advocacy Week April 18-24, 2021
Several of the events from Advocacy Week were recorded and have been uploaded on the organisation's website. The videos are titled: Remote Congressional Meeting Training, Kickoff Event with Rep. Jamie Raskin, Bipartisan Press Conference with Rep. Don Beyer and Rep. Jack Bergman and EmPOWER M.E. Roundtable: Elevating your Voice in Research.
Website here Thread here
Europe
Following joint planning sessions the European ME Alliance (EMEA) and the European Federation of Neurological Associations (EFNA) are arranging a multi-stakeholder, roundtable meeting on ME/CFS. The meeting will bring together a variety of initial stakeholders in Europe.
Article here Thread here
Canada
For the next 4 weeks, the ME/FM Society of British Columbia will be leading a conversation on important themes within the ME community. These themes were raised from patient conversations held during the Convene project.
Article here Thread here
PBS News Hour "A Brief But Spectacular take on chronic illness"
Excellent segment with patient advocate Rivka Solomon about ME and her work for patients with chronic illnesses. Duration 4 minutes.
Segment here Thread here
UK - ME Association Statement on Exercise in ME/CFS and Long Covid.
The statement emphasises the MEA's ongoing opposition to Graded Exercise Therapy, and recommends pacing and individualised approaches for those whose energy envelope increases. Some concern is expressed in forum discussion about aspects of the statement.
Article here Thread here
The Science Breaker Overcoming this is going to be difficult: Suicide risk, stigma, and chronic fatigue syndrome
Article by PhD Student Andrew Devendorf and Professor Leonard Jason based on a paper analysing responses from 29 ME or CFS patients. How patients felt trapped by their illness and the personal and social tolls of the illness were two broad themes they found, suggesting that "providing patients with social support and an ear interested in learning about their illness can go a long way".
Article here Thread here
Norway As part of a recent digital ME conference journalist and TV documentarist Paal Schaathun made a video interview with Professor Kristian Sommerfelt, PhD candidate Ingrid G. Rekeland and Professor Øystein Fluge about ME and current status of their research into the disease. Duration: 20 minutes.
Interview here Thread with summary here
ME-Livet Article by Nina E. Steinkopf about collaborations between psychiatry and the insurance industry in Denmark on re-defining ME as a functional disorder.
Article here Thread here
Norway Two researchers from the independent research organisation FAFO have written an opinion piece where they say they don't recognise the recent negative characteristics of ME patients in Norwegian media, and that it's a responsibility of researchers to build bridges rather than increase the distance between professionals and patients.
Opinion piece here Thread here
............
Trial by Error by David Tuller
"Northwestern Law Professor Steven Lubet Corresponds with McMaster U. About That WSJ Op-Ed"
Steven Lubet asks McMaster University whether a recent opinion piece dismissive of Long Covid, ME and its sufferers by one of their residents is representative for the University. He concludes that the resident "appears to have been following the lead of his seniors in mischaracterizing ME/CFS and possibly providing mistreatments"
Article here Thread here
.coda "A controversial program for chronic fatigue syndrome faces scrutiny"
A thorough article by David Tuller about the controversial method Lightning Process which has been marketed as a treatment for ME and now seems to target Long Covid. .coda also interviewed David Tuller in a podcast titled: "When pseudoscience infiltrates healthcare and nutrition."
Article here Podcast here Thread here
Tuller has followed up the .coda article with two additional articles:
"Do the "Vast Majority" of Lightning Process Participants Achieve "Lasting Change"?"
Article here
"More on the Lightning Process and the Science Media Centre's Collusion With UK Journalists"
Article here Thread here
"Why Have Experts in MUS Spent Ten Years Mis-Citing a Study about Costs to the NHS?"
David Tuller follows up on a recent email to one of the editors of Psychological Medicine regarding a paper they've published where once again a misstatement tripling the actual NIH costs of MUS has been used.
Article here Thread here
............
Biomedical research
Journal of Translational Medicine
"Hand grip strength [HGS] and fatigability: correlation with clinical parameters and diagnostic suitability in ME/CFS" by Jakel, Scheibenbogen et al.
'We assessed the HGS of 105 patients with ME/CFS, 18 patients with Cancer related fatigue and 66 healthy controls'. Using repeated tests at specified intervals, the ME/CFS patients had lower maximal and mean force, greater decline in strength and slower recovery. Results were correlated with clinical parameters, creatinine kinase (CK) and lactate dehydrogenase (LDH). 'Lower HGS parameters correlated with severity of disease, post-exertional malaise and muscle pain and with higher CK and LDH levels after exertion.'
'Conclusion: Repeat HGS assessment is a sensitive diagnostic test to assess muscular fatigue and fatigability and an objective measure to assess disease severity in ME/CFS.'
Paper here Thread here
Journal of Translational Medicine
"Pathophysiology of skeletal muscle disturbances in ME/CFS" by Wirth and Scheibenbogen.
This hypothesis paper builds on this team's earier published hypothesis based on autonomic dysfunction of 'sympathetic overactivity in the presence of vascular dysregulation by ß2AdR dysfunction' leading to 'release of endogenous vasodilators'. In this new paper '...the mechanisms underlying the energetic disturbance in muscles will be explained and merged with the first hypothesis'.
'The key information is that ß2AdR also stimulates the Na+/K+-ATPase in skeletal muscles. Appropriate muscular perfusion as well as function of the Na+/K+-ATPase determine muscle fatigability.' (quotes are from the abstract).
Paper here Thread here
Patent
"Method for the treatment of CFS using an inhibitory or cytotoxic agent against plasma cells", 2021, Fluge, Mella
Describes the use of several cytotoxic drugs, including case studies.
Details here Thread here
...........
Other research
Clinical Child Psychology and Psychiatry
"Exploring anhedonia in adolescents with Chronic Fatigue Syndrome (CFS): A mixed-methods study" by Smith et al.
This research study investigated anhedonia in 164 adolescents (age 12 to 18) with ME/CFS. The authors report that fifteen percent had clinically significant anhedonia.
Article here Thread here
Journal of Psychosomatic Research
“Anticipation of and response to exercise in adolescents with CFS: An experimental study” by Loades et al.
This research team used adolescents with ME/CFS, adolescents with asthma and healthy controls to measure expectations and anxiety before an exercise test. ME/CFS patients had higher anxiety and lower expectations for their performance on the exercise task than the other two groups.
Article here Thread here
Journal of Psychosomatic Research
“Cognitive and emotional variables predicting treatment outcome of cognitive behavior therapies for patients with medically unexplained symptoms: A meta-analysis” by Sarter et al.
The authors conducted a systematic search for variables that predict the outcome of CBT for patients with medically unexplained symptoms (MUS). 23 studies provided data to the meta-analysis. According to the authors, the results indicate that pre-treatment differences in patients' cognitive-emotional characteristics predict patients' outcome in CBT.
Article here Thread here
Recruiting The research project Tjenesten og MEg is recruiting family members and carers of severely ill ME patients in Norway for participation in focus group.
More information here Thread here
UK job University of Exeter part-time 6 months post-doctoral research associate to 'support the development of research on family carers of people with ME/CFS'. Closing date for applications 9th May.
Details here Thread here
...........
Coming events
infomed online Accredited webinars for doctors.
Practical Paediatrics Update 2021:Interactive on-line lectures followed with case scenarios, discussion and Q&A 10th - 11th June.
If any paediatricians or trainees have £300 to spare they can participate in 2 days of webinars, including 45 minutes with Prof Esther Crawley entitled: 'Paediatric Chronic Fatigue: With long COVID potentially being a growing problem, there are useful tips on how to manage children with chronic symptoms.'
Information here Thread here
...........
Part 2 in the next post.
Part 1 - see next post for part 2.
.............
Fundraising
Last few days - both appeals ending on Friday 30th April
(edited on Monday to add Keith's appeal. Apologies, I hadn't realised it was ending this week too).
David Tuller Trial by Error: Reporting on ME, CFS, ME/CFS, "medically unexplained symptoms," and related stuff.
'I hope to raise $60,000 in gifts to Berkeley to cover the six-month costs for my position as Senior Fellow in Public Health and Journalism at the Center for Global Public Health, which is part of the School of Public Health. The funding will cover from July through December of this year.'
So far, with 5 days to go, donations have reached $46,000 of the $60,000 target.
Fundraising here Thread here
Keith Geraghty is an unsalaried research fellow at Manchester University who has published significant papers on ME/CFS. The fundraising is to enable him to continue this work, including writing up papers: 'One is on how CBT trials are open to bias and manipulation & another is on how "good evidence" isn't always that good!' (quoted from a tweet).
With 4 days to go, £15,700 of the £25,000 target has been donated so far.
Details and donation here Thread here
................
News, articles and videos
UK Priority Setting Partnership
"Your idea could change the future of ME/CFS research".
'We ask you - people with ME/CFS, carers and healthcare professionals - to tell us the questions that you think research should answer. This will be through an online or paper based survey.' This first stage in a process to identify 10 top research priorities for ME/CFS is open until 5th July 2021. The survey is only open to UK residents, but there is a forum thread where members worldwide are invited to share ideas for submission.
Details and survey here Thread here Thread to discuss ideas here
United States
The US ME/CFS Clinician Coalition has published recommendations for ME/CFS treatment and testing. These are intended as general guidance for medical providers and cannot be used as a substitute for clinical care by a physician. Forum discussion includes concern that some recommendations do not have research evidence to support their use as treatments for ME/CFS.
Article here Thread here
Solve M.E. Advocacy Week April 18-24, 2021
Several of the events from Advocacy Week were recorded and have been uploaded on the organisation's website. The videos are titled: Remote Congressional Meeting Training, Kickoff Event with Rep. Jamie Raskin, Bipartisan Press Conference with Rep. Don Beyer and Rep. Jack Bergman and EmPOWER M.E. Roundtable: Elevating your Voice in Research.
Website here Thread here
Europe
Following joint planning sessions the European ME Alliance (EMEA) and the European Federation of Neurological Associations (EFNA) are arranging a multi-stakeholder, roundtable meeting on ME/CFS. The meeting will bring together a variety of initial stakeholders in Europe.
Article here Thread here
Canada
For the next 4 weeks, the ME/FM Society of British Columbia will be leading a conversation on important themes within the ME community. These themes were raised from patient conversations held during the Convene project.
Article here Thread here
PBS News Hour "A Brief But Spectacular take on chronic illness"
Excellent segment with patient advocate Rivka Solomon about ME and her work for patients with chronic illnesses. Duration 4 minutes.
Segment here Thread here
UK - ME Association Statement on Exercise in ME/CFS and Long Covid.
The statement emphasises the MEA's ongoing opposition to Graded Exercise Therapy, and recommends pacing and individualised approaches for those whose energy envelope increases. Some concern is expressed in forum discussion about aspects of the statement.
Article here Thread here
The Science Breaker Overcoming this is going to be difficult: Suicide risk, stigma, and chronic fatigue syndrome
Article by PhD Student Andrew Devendorf and Professor Leonard Jason based on a paper analysing responses from 29 ME or CFS patients. How patients felt trapped by their illness and the personal and social tolls of the illness were two broad themes they found, suggesting that "providing patients with social support and an ear interested in learning about their illness can go a long way".
Article here Thread here
Norway As part of a recent digital ME conference journalist and TV documentarist Paal Schaathun made a video interview with Professor Kristian Sommerfelt, PhD candidate Ingrid G. Rekeland and Professor Øystein Fluge about ME and current status of their research into the disease. Duration: 20 minutes.
Interview here Thread with summary here
ME-Livet Article by Nina E. Steinkopf about collaborations between psychiatry and the insurance industry in Denmark on re-defining ME as a functional disorder.
Article here Thread here
Norway Two researchers from the independent research organisation FAFO have written an opinion piece where they say they don't recognise the recent negative characteristics of ME patients in Norwegian media, and that it's a responsibility of researchers to build bridges rather than increase the distance between professionals and patients.
Opinion piece here Thread here
............
Trial by Error by David Tuller
"Northwestern Law Professor Steven Lubet Corresponds with McMaster U. About That WSJ Op-Ed"
Steven Lubet asks McMaster University whether a recent opinion piece dismissive of Long Covid, ME and its sufferers by one of their residents is representative for the University. He concludes that the resident "appears to have been following the lead of his seniors in mischaracterizing ME/CFS and possibly providing mistreatments"
Article here Thread here
.coda "A controversial program for chronic fatigue syndrome faces scrutiny"
A thorough article by David Tuller about the controversial method Lightning Process which has been marketed as a treatment for ME and now seems to target Long Covid. .coda also interviewed David Tuller in a podcast titled: "When pseudoscience infiltrates healthcare and nutrition."
Article here Podcast here Thread here
Tuller has followed up the .coda article with two additional articles:
"Do the "Vast Majority" of Lightning Process Participants Achieve "Lasting Change"?"
Article here
"More on the Lightning Process and the Science Media Centre's Collusion With UK Journalists"
Article here Thread here
"Why Have Experts in MUS Spent Ten Years Mis-Citing a Study about Costs to the NHS?"
David Tuller follows up on a recent email to one of the editors of Psychological Medicine regarding a paper they've published where once again a misstatement tripling the actual NIH costs of MUS has been used.
Article here Thread here
............
Biomedical research
Journal of Translational Medicine
"Hand grip strength [HGS] and fatigability: correlation with clinical parameters and diagnostic suitability in ME/CFS" by Jakel, Scheibenbogen et al.
'We assessed the HGS of 105 patients with ME/CFS, 18 patients with Cancer related fatigue and 66 healthy controls'. Using repeated tests at specified intervals, the ME/CFS patients had lower maximal and mean force, greater decline in strength and slower recovery. Results were correlated with clinical parameters, creatinine kinase (CK) and lactate dehydrogenase (LDH). 'Lower HGS parameters correlated with severity of disease, post-exertional malaise and muscle pain and with higher CK and LDH levels after exertion.'
'Conclusion: Repeat HGS assessment is a sensitive diagnostic test to assess muscular fatigue and fatigability and an objective measure to assess disease severity in ME/CFS.'
Paper here Thread here
Journal of Translational Medicine
"Pathophysiology of skeletal muscle disturbances in ME/CFS" by Wirth and Scheibenbogen.
This hypothesis paper builds on this team's earier published hypothesis based on autonomic dysfunction of 'sympathetic overactivity in the presence of vascular dysregulation by ß2AdR dysfunction' leading to 'release of endogenous vasodilators'. In this new paper '...the mechanisms underlying the energetic disturbance in muscles will be explained and merged with the first hypothesis'.
'The key information is that ß2AdR also stimulates the Na+/K+-ATPase in skeletal muscles. Appropriate muscular perfusion as well as function of the Na+/K+-ATPase determine muscle fatigability.' (quotes are from the abstract).
Paper here Thread here
Patent
"Method for the treatment of CFS using an inhibitory or cytotoxic agent against plasma cells", 2021, Fluge, Mella
Describes the use of several cytotoxic drugs, including case studies.
Details here Thread here
...........
Other research
Clinical Child Psychology and Psychiatry
"Exploring anhedonia in adolescents with Chronic Fatigue Syndrome (CFS): A mixed-methods study" by Smith et al.
This research study investigated anhedonia in 164 adolescents (age 12 to 18) with ME/CFS. The authors report that fifteen percent had clinically significant anhedonia.
Article here Thread here
Journal of Psychosomatic Research
“Anticipation of and response to exercise in adolescents with CFS: An experimental study” by Loades et al.
This research team used adolescents with ME/CFS, adolescents with asthma and healthy controls to measure expectations and anxiety before an exercise test. ME/CFS patients had higher anxiety and lower expectations for their performance on the exercise task than the other two groups.
Article here Thread here
Journal of Psychosomatic Research
“Cognitive and emotional variables predicting treatment outcome of cognitive behavior therapies for patients with medically unexplained symptoms: A meta-analysis” by Sarter et al.
The authors conducted a systematic search for variables that predict the outcome of CBT for patients with medically unexplained symptoms (MUS). 23 studies provided data to the meta-analysis. According to the authors, the results indicate that pre-treatment differences in patients' cognitive-emotional characteristics predict patients' outcome in CBT.
Article here Thread here
Recruiting The research project Tjenesten og MEg is recruiting family members and carers of severely ill ME patients in Norway for participation in focus group.
More information here Thread here
UK job University of Exeter part-time 6 months post-doctoral research associate to 'support the development of research on family carers of people with ME/CFS'. Closing date for applications 9th May.
Details here Thread here
...........
Coming events
infomed online Accredited webinars for doctors.
Practical Paediatrics Update 2021:Interactive on-line lectures followed with case scenarios, discussion and Q&A 10th - 11th June.
If any paediatricians or trainees have £300 to spare they can participate in 2 days of webinars, including 45 minutes with Prof Esther Crawley entitled: 'Paediatric Chronic Fatigue: With long COVID potentially being a growing problem, there are useful tips on how to manage children with chronic symptoms.'
Information here Thread here
...........
Part 2 in the next post.
Last edited:
Week beginning 19th April 2021
Part 2 (continued from previous post)
Covid-19 and ME
Center for solutions for ME/CFS Letter to NIH Director Francis Collins from the Community Advisory Committee to the ME/CFS Collaborative Research Center consortium. They urge NIH to build upon ME/CFS research to advance research in both PASC and post viral syndrome research and to include ME/CFS researchers and clinicians in strategic planning.
Letter here Thread here
American Academy of Neurology recently had their annual meeting, which included a special session on COVID-19. Medpage Today reports that both Anthony Fauci and Walter Koroshetz from NIH attended and said more knowledge about post-acute COVID may also foster a better understanding of ME/CFS. Dr. Avindra Nath from NIH was interviewed about his research into Long Covid and CFS.
Medpage Today article here Thread here
Dr. Avindra Nath interview here (Duration 2 min) Thread here
UK ME Association "Statement re: BBC Newsnight report on Long Covid & ME/CFS"
Following the Newsnight program on 8th April (previously reported here) for which Dr Charles Shepherd 'had briefed the producers and pre-recoded a comprehensive review of activity and energy management in both ME/CFS and Long Covid.' Only a small part of his interview was broadcast, with the main emphasis of the program being on graded exercise therapy. Complaints have been sent to the BBC, including by forum members, and rejected.
Article here Thread here
Body Politic Open letter to the NIH signed Fiona Lowenstein and Angela Vázquez from the grassroots health justice organisation Body Politic. "We are hopeful that the NIH will use this opportunity to build on the work of ME researchers and others who have studied similar illnesses, understanding both the links between these diagnoses and the unique challenges these conditions present."
Letter here Thread here
Therapeutic Advances in Infectious Disease
"COVID-19 and post-infectious ME/CFS: a narrative review" by Poenaru et al.
Lists and discusses the common symptoms post Covid-19 and of ME/CFS, and concludes that while there are important similarities, 'Further research is required to determine the natural history of this condition, as well as to define risk factors, prevalence, and possible interventional strategies.'
Article here Thread here
Other items of interest
Los Angeles Times Op-Ed: How long-haul COVID-19 could offer clues for treating other puzzling chronic illnesses
Article here Thread here
Cape Talk 'Long Covid is a post-viral fatigue syndrome also seen after swine and bird flu'
Article and radio segment (15 minutes) here Thread here
Nature Long COVID's long R&D agenda
Article here Thread here
The Business Standard Why impact of 'long Covid' could outlast the pandemic
Article here Thread here
Dagens Arena Post-covid ger chans till viktig forskning (Post-covid provides an opportunity for important research) by prof. Sven Britton
Opinion piece here Thread here
KSHB Kansas City 'I feel alive': COVID-19 long haulers report recovery after receiving vaccine
News segment here Thread here
............
S4ME social media: Facebook, Twitter and You Tube
Part 2 (continued from previous post)
Covid-19 and ME
Center for solutions for ME/CFS Letter to NIH Director Francis Collins from the Community Advisory Committee to the ME/CFS Collaborative Research Center consortium. They urge NIH to build upon ME/CFS research to advance research in both PASC and post viral syndrome research and to include ME/CFS researchers and clinicians in strategic planning.
Letter here Thread here
American Academy of Neurology recently had their annual meeting, which included a special session on COVID-19. Medpage Today reports that both Anthony Fauci and Walter Koroshetz from NIH attended and said more knowledge about post-acute COVID may also foster a better understanding of ME/CFS. Dr. Avindra Nath from NIH was interviewed about his research into Long Covid and CFS.
Medpage Today article here Thread here
Dr. Avindra Nath interview here (Duration 2 min) Thread here
UK ME Association "Statement re: BBC Newsnight report on Long Covid & ME/CFS"
Following the Newsnight program on 8th April (previously reported here) for which Dr Charles Shepherd 'had briefed the producers and pre-recoded a comprehensive review of activity and energy management in both ME/CFS and Long Covid.' Only a small part of his interview was broadcast, with the main emphasis of the program being on graded exercise therapy. Complaints have been sent to the BBC, including by forum members, and rejected.
Article here Thread here
Body Politic Open letter to the NIH signed Fiona Lowenstein and Angela Vázquez from the grassroots health justice organisation Body Politic. "We are hopeful that the NIH will use this opportunity to build on the work of ME researchers and others who have studied similar illnesses, understanding both the links between these diagnoses and the unique challenges these conditions present."
Letter here Thread here
Therapeutic Advances in Infectious Disease
"COVID-19 and post-infectious ME/CFS: a narrative review" by Poenaru et al.
Lists and discusses the common symptoms post Covid-19 and of ME/CFS, and concludes that while there are important similarities, 'Further research is required to determine the natural history of this condition, as well as to define risk factors, prevalence, and possible interventional strategies.'
Article here Thread here
Other items of interest
Los Angeles Times Op-Ed: How long-haul COVID-19 could offer clues for treating other puzzling chronic illnesses
Article here Thread here
Cape Talk 'Long Covid is a post-viral fatigue syndrome also seen after swine and bird flu'
Article and radio segment (15 minutes) here Thread here
Nature Long COVID's long R&D agenda
Article here Thread here
The Business Standard Why impact of 'long Covid' could outlast the pandemic
Article here Thread here
Dagens Arena Post-covid ger chans till viktig forskning (Post-covid provides an opportunity for important research) by prof. Sven Britton
Opinion piece here Thread here
KSHB Kansas City 'I feel alive': COVID-19 long haulers report recovery after receiving vaccine
News segment here Thread here
............
S4ME social media: Facebook, Twitter and You Tube
Week beginning 26th April 2021
Part 1 (continued in the next post)
News, articles and videos
Emerge Australia You + ME registry and symptom tracker app is now open. 'This is our first, critical step to our fully-operational Mason Foundation-funded ME/CFS Biobank, developed with Solve M.E.' This not only enables people with ME/CFS to track their own illness, but provides a vital resource for future research.
Article here Thread here
Australia - Think GP which provides online Continuing Professional Development modules for clinicians now has a second module on ME/CFS:
"Ensuring a patient-centred approach to care for people with ME/CFS" that follows its first module "Busting the myths and redefining ME/CFS".
ThinkGP module here Thread here
UK Chronic Illness Inclusion Project Report and presentation video.
"I already have a job... getting through the day." On energy limiting chronic illness, social inclusion, employment and social security.
Report here (62 pages) Video here (1.5 hours) Thread here
UK Parliament Commons Work and Pensions Select Committee
In an evidence session on the disablity employment gap, Catherine Hale of the Chronic Illness Inclusion Project gave evidence on the effect of energy limiting conditions such as ME on employment.
Video here (starts at 1:07h, duration 1h.) Thread here
Hungary
A Hungarian website aimed at doctors published an article on ME/CFS. It is based on an earlier Medscape article about the press conference organized by ME Action.
Article here Thread here
France
Dr. Alaa Ghali from the university hospital of Angers talks about post-exertional malaise in Long Covid and ME/CFS in an interview with the French magazine Paris Match.
Article here Thread here
Europe
The Conference on the Future of Europe offers an opportunity for European citizens to debate on Europe’s challenges and priorities. Evelien Van Den Brink of the European ME Coalition (EMEC) has submitted a proposal to invest in biomedical research on ME/CFS. By signing up to the EU website, you can endorse Evelien’s proposal.
Proposal here Thread here
Fundraising The work of Dr David Tuller and Dr Keith Geraghty has been supported by successful appeals that reached their targets.
Threads with details here and here
Trial by Error by David Tuller
"Professor David's Third Mis-Citation of Seminar Study of "Medically Unexplained Symptoms"
A new email to professor Anthony David from University College London concerning yet another paper of his where a misstatement has been used exaggerating the actual NIH costs of MUS.
Article here Thread here
............
Biomedical news and research
Open Medicine Foundation A grant of $1million from the Khosla Family Foundation will fund research at Uppsala by Dr. Jonas Bergquist on 'analyzing cerebrospinal fluid and plasma samples through proteomics and metabolomics'; and Dr. Christopher Armstrong in Melbourne on 'Identifying disease development pathways and exacerbating factors', and on 'using 'ocular motor (eye control) measures in the brain'.
Article here Thread here
Open Medicine Foundation virtual open house was held online on 1st May. 'A free event to hear from our Collaborative Research Center Directors (Stanford, Harvard, Uppsala, University of Montreal and Melbourne) about the exciting research that OMF is funding!'
The video of this event is available on You Tube. Duration 2h 51min.
Video here Thread here
USA - Jax ME/CFS Center update. With their clinical partners at Bateman Horne Center they are doing flow cytometry experiments on blood samples taken from each person at 3 time points to look for differences in the immune cells between people with ME/CFS and healthy controls. They will be doing the same with post-acute COVID syndrome patients for comparison. Ian Lipkin’s group at Columbia University will be probing the metabolome and looking at proteomic and transcriptomic data of the same subjects.
Article here Thread here
USA NIH National Heart, Lung and Blood Institute Research Feature: "Decoding the Mysteries of Postural Orthostatic Tachycardia Syndrome"
Article mentions the need to differentially diagnose POTS, ME and CFS.
A Notice of Special Interest has been issued to encourage researchers to submit proposals designed to answer fundamental questions about POTS. Initial applications are due June 5, 2021.'
Article here Thread here
Japanese Society of Internal Medicine
"Oral Minocycline Therapy Improves Symptoms of ME, Especially in the Initial Disease Stage" by Miwa
100 ME patients treated with Minocycline (an antibiotic claimed to suppress neural inflammation in a mouse model). 27 reported some imp, and 38 dropped out because of side effects.
Paper here Thread here
Molecular Genetics and Metabolism
"Whole genome sequencing uncovers a misclassified case of glycogen storage disease type 13 previously diagnosed as ME/CFS" by Brown, Younger et al.
In a pilot whole genome study of ME/CFS patients, one patient had a rare variant of a gene that has symptoms including exercise intolerance and muscle pains. The authors conclude: 'Clearly, the time has come to consider genomic sequencing as part of the standard of care to diagnose and classify these patients.'
Article here Thread here
Dove Press
"CFS and Bone Marrow Defects of the Jaw – A Case Report on Additional Dental X-Ray Diagnostics with Ultrasound" Lechner & Schick
A person diagosed with CFS was found to have a fungal infection in the jaw bone.
Article here Thread here
............
Other research
medxriv
“Is it time to ACT? A qualitative study of the acceptability and feasibility of Acceptance and Commitment Therapy for adolescents with Chronic Fatigue Syndrome” by Clery et al.
In this preprint the research team of Esther Crawley conducted interviews with children diagnosed with ME/CFS their carers and healthcare professionals about Acceptance and Commitment Therapy (ACT). All participants thought ACT was acceptable. Some patients preferred ACT to Cognitive Behavioural Therapy (CBT) as it encouraged accepting rather than challenging thoughts.
Article here Thread here
Healthcare
“Extremely Severe ME/CFS—A Personal Account” by Whitney Dafoe
In this article published in a scientific journal, Whitney Dafoe gives a personal account of living with extremely severe ME/CFS.
Article here Thread here
Cochrane
Following a complaint by Caroline Struthers to the Committee on Publication Ethics (COPE), Cochrane has posted a note stating that their review on cognitive behavior therapy for CFS should not be used, on the plan language summary page.
Note here Thread here
.............
Coming events
ME Awareness month May 2021
Due to the pandemic, most events and activities for ME Awareness month, including #MillionsMissing and Go Blue for ME, will be online again this year.
Thread with details here
Massachusetts ME/CFS & FM Association Research Club Support Group on Zoom "Are stealth infections causing chronic illness?" Steven Phillips, MD, May 23.
Thread with link here
IACFS/ME Conference (International Association for CFS/ME)
Virtual Conference August 19-21 2021.
The deadline for submitting research or a workshop proposal has been extended to May 17.
Details for submissions here Conference website here Thread here
.............
See next post for part 2
Part 1 (continued in the next post)
News, articles and videos
Emerge Australia You + ME registry and symptom tracker app is now open. 'This is our first, critical step to our fully-operational Mason Foundation-funded ME/CFS Biobank, developed with Solve M.E.' This not only enables people with ME/CFS to track their own illness, but provides a vital resource for future research.
Article here Thread here
Australia - Think GP which provides online Continuing Professional Development modules for clinicians now has a second module on ME/CFS:
"Ensuring a patient-centred approach to care for people with ME/CFS" that follows its first module "Busting the myths and redefining ME/CFS".
ThinkGP module here Thread here
UK Chronic Illness Inclusion Project Report and presentation video.
"I already have a job... getting through the day." On energy limiting chronic illness, social inclusion, employment and social security.
Report here (62 pages) Video here (1.5 hours) Thread here
UK Parliament Commons Work and Pensions Select Committee
In an evidence session on the disablity employment gap, Catherine Hale of the Chronic Illness Inclusion Project gave evidence on the effect of energy limiting conditions such as ME on employment.
Video here (starts at 1:07h, duration 1h.) Thread here
Hungary
A Hungarian website aimed at doctors published an article on ME/CFS. It is based on an earlier Medscape article about the press conference organized by ME Action.
Article here Thread here
France
Dr. Alaa Ghali from the university hospital of Angers talks about post-exertional malaise in Long Covid and ME/CFS in an interview with the French magazine Paris Match.
Article here Thread here
Europe
The Conference on the Future of Europe offers an opportunity for European citizens to debate on Europe’s challenges and priorities. Evelien Van Den Brink of the European ME Coalition (EMEC) has submitted a proposal to invest in biomedical research on ME/CFS. By signing up to the EU website, you can endorse Evelien’s proposal.
Proposal here Thread here
Fundraising The work of Dr David Tuller and Dr Keith Geraghty has been supported by successful appeals that reached their targets.
Threads with details here and here
Trial by Error by David Tuller
"Professor David's Third Mis-Citation of Seminar Study of "Medically Unexplained Symptoms"
A new email to professor Anthony David from University College London concerning yet another paper of his where a misstatement has been used exaggerating the actual NIH costs of MUS.
Article here Thread here
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Biomedical news and research
Open Medicine Foundation A grant of $1million from the Khosla Family Foundation will fund research at Uppsala by Dr. Jonas Bergquist on 'analyzing cerebrospinal fluid and plasma samples through proteomics and metabolomics'; and Dr. Christopher Armstrong in Melbourne on 'Identifying disease development pathways and exacerbating factors', and on 'using 'ocular motor (eye control) measures in the brain'.
Article here Thread here
Open Medicine Foundation virtual open house was held online on 1st May. 'A free event to hear from our Collaborative Research Center Directors (Stanford, Harvard, Uppsala, University of Montreal and Melbourne) about the exciting research that OMF is funding!'
The video of this event is available on You Tube. Duration 2h 51min.
Video here Thread here
USA - Jax ME/CFS Center update. With their clinical partners at Bateman Horne Center they are doing flow cytometry experiments on blood samples taken from each person at 3 time points to look for differences in the immune cells between people with ME/CFS and healthy controls. They will be doing the same with post-acute COVID syndrome patients for comparison. Ian Lipkin’s group at Columbia University will be probing the metabolome and looking at proteomic and transcriptomic data of the same subjects.
Article here Thread here
USA NIH National Heart, Lung and Blood Institute Research Feature: "Decoding the Mysteries of Postural Orthostatic Tachycardia Syndrome"
Article mentions the need to differentially diagnose POTS, ME and CFS.
A Notice of Special Interest has been issued to encourage researchers to submit proposals designed to answer fundamental questions about POTS. Initial applications are due June 5, 2021.'
Article here Thread here
Japanese Society of Internal Medicine
"Oral Minocycline Therapy Improves Symptoms of ME, Especially in the Initial Disease Stage" by Miwa
100 ME patients treated with Minocycline (an antibiotic claimed to suppress neural inflammation in a mouse model). 27 reported some imp, and 38 dropped out because of side effects.
Paper here Thread here
Molecular Genetics and Metabolism
"Whole genome sequencing uncovers a misclassified case of glycogen storage disease type 13 previously diagnosed as ME/CFS" by Brown, Younger et al.
In a pilot whole genome study of ME/CFS patients, one patient had a rare variant of a gene that has symptoms including exercise intolerance and muscle pains. The authors conclude: 'Clearly, the time has come to consider genomic sequencing as part of the standard of care to diagnose and classify these patients.'
Article here Thread here
Dove Press
"CFS and Bone Marrow Defects of the Jaw – A Case Report on Additional Dental X-Ray Diagnostics with Ultrasound" Lechner & Schick
A person diagosed with CFS was found to have a fungal infection in the jaw bone.
Article here Thread here
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Other research
medxriv
“Is it time to ACT? A qualitative study of the acceptability and feasibility of Acceptance and Commitment Therapy for adolescents with Chronic Fatigue Syndrome” by Clery et al.
In this preprint the research team of Esther Crawley conducted interviews with children diagnosed with ME/CFS their carers and healthcare professionals about Acceptance and Commitment Therapy (ACT). All participants thought ACT was acceptable. Some patients preferred ACT to Cognitive Behavioural Therapy (CBT) as it encouraged accepting rather than challenging thoughts.
Article here Thread here
Healthcare
“Extremely Severe ME/CFS—A Personal Account” by Whitney Dafoe
In this article published in a scientific journal, Whitney Dafoe gives a personal account of living with extremely severe ME/CFS.
Article here Thread here
Cochrane
Following a complaint by Caroline Struthers to the Committee on Publication Ethics (COPE), Cochrane has posted a note stating that their review on cognitive behavior therapy for CFS should not be used, on the plan language summary page.
Note here Thread here
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Coming events
ME Awareness month May 2021
Due to the pandemic, most events and activities for ME Awareness month, including #MillionsMissing and Go Blue for ME, will be online again this year.
Thread with details here
Massachusetts ME/CFS & FM Association Research Club Support Group on Zoom "Are stealth infections causing chronic illness?" Steven Phillips, MD, May 23.
Thread with link here
IACFS/ME Conference (International Association for CFS/ME)
Virtual Conference August 19-21 2021.
The deadline for submitting research or a workshop proposal has been extended to May 17.
Details for submissions here Conference website here Thread here
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See next post for part 2
Week beginning 26th April 2021
Part 2 (continued from the previous post)
Covid-19 and ME
JOSPT "Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Décary et al
"In this editorial, we expose growing concerns about long COVID and ME. We issue safety recommendations for rehabilitation and share resources to improve care for those with postviral illnesses.
Paper here (abstract) Thread here
Medicina
“Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology” by Wong & Weitzer
The authors conducted a systematic review of studies related to long COVID symptomatology and compared these to a list of ME/CFS symptoms compiled from multiple case definitions. A substantial overlap was noted with 25 out of 29 known ME/CFS symptoms being reported by at least one selected long COVID study.
Article here Thread here
#MEAction (UK and Scotland) and Action for ME
"Report on the impact of Covid-19 on ME - Preliminary findings from a survey on ME and Covid-19"
A significant majority of the 220 people who have responded so far report that catching Covid-19 has had long term effects of worsening their ME/CFS as well as adding new symptoms. The survey is still open.
Report here #MEAction here Action for ME here Thread here
USA Hearing on "The Long Haul: Forging A Path Through The Lingering Effects Of COVID-19"
A 6 hour long Congress hearing on Long Covid took place April 28th. Among the witnesses were Francis S. Collins, Director of NIH and powerful statements from patients Natalie Hakala, Lisa McCorkell and Chimere Smith. Twitter summary by Hannah Davis here.
Congress Hearing here Thread here
UK Guardian
"Long Covid is very far from ‘all in the mind’ – but psychology can still help us treat it" by Carmine M Pariante, professor of biological psychiatry at King’s College London. Describes Long Covid as having similar symptoms to ME/CFS, and attempts to make a biological case for psychosocial treatments which he claims 'work by challenging unhelpful ways we think about ourselves and world around us'.
Article here Thread here
Guardian Letters "Long Covid: why psychological therapies may have limited benefits" Dr Dominic Salisbury 'says poor-quality evidence lies behind some treatments such as CBT'. An excellent brief response that refutes all the justifications Pariante gives for psychological treatments for ME/CFS and Long Covid.
Letter here Thread here
Trial by Error by David Tuller "In Guardian Column, Professor Pariante Parrots Standard Biopsychosocial Nonsense"
'Professor Pariante’s new piece appears to be part of an ongoing campaign seeking to prevent the unraveling of the biopsychosocial paradigm for ME/CFS–and by extension for Long COVID.'
Article here Thread here
New Zealand Science Media Centre "Long COVID in New Zealand – Expert Q&A" Experts Dr Anna Brooks, cellular immunologist at the University of Auckland, and emeritus Professor Warren Tate, biochemist, molecular biologist and ME/CFS expert, University of Otago answered questions. Issues raised included medical gaslighting, ME/CFS and the need for better research and care.
Article here Thread here
Sweden The Royal Swedish Academy of Science has published a report on Long Covid. The reports includes a very problematic description of ME as a condition "based upon psychosocial anxiety and other factors channeled into bodily symptoms".
Report here (Swedish) Thread here
Medical News Today "Long COVID and children: The unseen casualties of COVID-19" describes experiences of parents and children, some feeling gaslighted, and being prescribed exercise based rehabilitation that makes them worse.
Article here Thread here
Other items of interest
Los Angeles Times 'Long haul' COVID-19 sufferers take a page from AIDS/HIV activism to be heard
Article here Thread here
Nature Scientists set out to connect the dots on long COVID
Article here Thread here
..............
S4ME social media: Facebook, Twitter and You Tube
Part 2 (continued from the previous post)
Covid-19 and ME
JOSPT "Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" by Décary et al
"In this editorial, we expose growing concerns about long COVID and ME. We issue safety recommendations for rehabilitation and share resources to improve care for those with postviral illnesses.
Paper here (abstract) Thread here
Medicina
“Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—A Systemic Review and Comparison of Clinical Presentation and Symptomatology” by Wong & Weitzer
The authors conducted a systematic review of studies related to long COVID symptomatology and compared these to a list of ME/CFS symptoms compiled from multiple case definitions. A substantial overlap was noted with 25 out of 29 known ME/CFS symptoms being reported by at least one selected long COVID study.
Article here Thread here
#MEAction (UK and Scotland) and Action for ME
"Report on the impact of Covid-19 on ME - Preliminary findings from a survey on ME and Covid-19"
A significant majority of the 220 people who have responded so far report that catching Covid-19 has had long term effects of worsening their ME/CFS as well as adding new symptoms. The survey is still open.
Report here #MEAction here Action for ME here Thread here
USA Hearing on "The Long Haul: Forging A Path Through The Lingering Effects Of COVID-19"
A 6 hour long Congress hearing on Long Covid took place April 28th. Among the witnesses were Francis S. Collins, Director of NIH and powerful statements from patients Natalie Hakala, Lisa McCorkell and Chimere Smith. Twitter summary by Hannah Davis here.
Congress Hearing here Thread here
UK Guardian
"Long Covid is very far from ‘all in the mind’ – but psychology can still help us treat it" by Carmine M Pariante, professor of biological psychiatry at King’s College London. Describes Long Covid as having similar symptoms to ME/CFS, and attempts to make a biological case for psychosocial treatments which he claims 'work by challenging unhelpful ways we think about ourselves and world around us'.
Article here Thread here
Guardian Letters "Long Covid: why psychological therapies may have limited benefits" Dr Dominic Salisbury 'says poor-quality evidence lies behind some treatments such as CBT'. An excellent brief response that refutes all the justifications Pariante gives for psychological treatments for ME/CFS and Long Covid.
Letter here Thread here
Trial by Error by David Tuller "In Guardian Column, Professor Pariante Parrots Standard Biopsychosocial Nonsense"
'Professor Pariante’s new piece appears to be part of an ongoing campaign seeking to prevent the unraveling of the biopsychosocial paradigm for ME/CFS–and by extension for Long COVID.'
Article here Thread here
New Zealand Science Media Centre "Long COVID in New Zealand – Expert Q&A" Experts Dr Anna Brooks, cellular immunologist at the University of Auckland, and emeritus Professor Warren Tate, biochemist, molecular biologist and ME/CFS expert, University of Otago answered questions. Issues raised included medical gaslighting, ME/CFS and the need for better research and care.
Article here Thread here
Sweden The Royal Swedish Academy of Science has published a report on Long Covid. The reports includes a very problematic description of ME as a condition "based upon psychosocial anxiety and other factors channeled into bodily symptoms".
Report here (Swedish) Thread here
Medical News Today "Long COVID and children: The unseen casualties of COVID-19" describes experiences of parents and children, some feeling gaslighted, and being prescribed exercise based rehabilitation that makes them worse.
Article here Thread here
Other items of interest
Los Angeles Times 'Long haul' COVID-19 sufferers take a page from AIDS/HIV activism to be heard
Article here Thread here
Nature Scientists set out to connect the dots on long COVID
Article here Thread here
..............
S4ME social media: Facebook, Twitter and You Tube