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News in Brief - April 2022
- Thread starter Trish
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Week beginning 4th April 2022
News, articles and advocacy
USA The White House launched a national plan for "addressing the long-term effects of COVID-19." Secretary Xavier Becerra of the HHS (Health and Human Services) will release a National Research Action Plan within four months. ME/CFS, dysautonomia, and MCAS are mentioned briefly in a fact sheet associated with this announcement.
Announcement here Thread here
UK - NHS Scotland has updated its webite aimed at patients, NHS Inform, to reflect the new NICE ME/CFS guideline. It provides a simplified version of NICE advice and directs patients to Action for ME for further information.
Website here Thread here
Norway There was an interpellation at the Norwegian Parliament to the Minister of Health about what she will do to improve the health care services for ME patients after a newspaper article wrote that a majority of ME patients deteriorate from rehabilitation and work assessment. Sadly, the Minister's reply was disappointing. Researchers from a project on health care services and ME (Tjenesten og MEg) wrote an opinion letter stating that the situation is problematic for a welfare state and that there's no indication things will improve by procrastination.
Opinion piece here (paywalled) Thread here
USA "Solve Long Covid Initiative Press Event: Long Covid Impact on U.S. Adults"
Solve M.E. held a press event on April 5 to talk about the release of their whitepaper on Long Covid. The panel discussed the financial, social, and emotional impact of Long Covid and post-infection illnesses. A recording of this event (one hour) is now available online.
Paper (PDF) here Video here Thread here
Switzerland
The Swiss national broadcaster SRF has created a documentary about ME/CFS titled: “Das Chronische Fatigue-Syndrom – ein Albtraum für Betroffene.” The film shows the difficulties of Dejan and Cassandra, two patients with ME/CFS, in getting recognition for their illness.
Documentary here Thread here
HealthSense
“Why deny patients with chronic fatigue syndrome treatments that can help?”
Peter White reiterates his arguments in defending the findings of the PACE trial on which he was the lead researcher. His article responds to a previous piece by Caroline Struthers published in the HealthWatch newsletter titled “It is not only drugs and devices that can harm.”
Article here Thread here
National Geographic "Can this 19th-century health practice help with long COVID?"
On rediscovering convalescence as an approach to post-viral illness. Co-director of Johns Hopkins' Post-Acute COVID-19 Program, Alba Miranda Azola says "We have found that patients with post-viral fatigue that push through and enter a crash cycle have overall functional decline".
Article here Thread here
USA - The Washington Post "How long covid is accelerating a revolution in medical research"
On the beneficial partnership between Long Covid patient advocates and researchers. Also goes into some of the history of patient advocacy and includes a quote from Walter Koroshetz (NIH) saying that the research initiative RECOVER is aimed at also understanding post-viral conditions as ME/CFS.
Article here Thread here
UK - The Guardian "I have long Covid and despair that the UK government ignores its blight"
Good opinion piece by Ravi Veriah Jacques about the severity of Long Covid and how under investment in research into post viral illnesses such as ME has left the UK unprepared for Long Covid. Also tells of how the PACE trial and the psychologisation of ME have hindered development.
Opinion piece here Thread here
Germany - Zeit Online has a long article on Long Covid including patients' experiences, doctors' responses, and some treatments being tried.
Article here (in German) Thread with some English translation here
.........
Fundraising
USA - Dr David Tuller Trial By Error: Reporting on ME, CFS, ME/CFS, "Medically Unexplained Symptoms," and now Long Covid
The University of California, Berkeley, is crowdfunding to support the post of Dr David Tuller during the month of April with a goal of $67,000. "My output for this project is a combination of posting on Virology Blog, writing articles for various news organizations, and working on academic papers for peer review. I also expect to be posting more video interviews with people involved in the field."
Donate here Thread here
UK - Dr Keith Geraghty is crowdfunding to support his work researching ME/CFS at the University of Manchester. Target £12,000.
"I work on the interface between primary care medicine (so when you see your GP or get medical care in the community) and health psychology. This covers a wide variety of topics, but I boil it down to trying to get drs to treat ME patients better today, whilst we seek out biomedical understanding of the disease."
Donate here Thread here
.........
Coming Events
USA National Institutes of Health (NIH)
RECOVER Seminar: Commonalities with Other Disorders and Post-viral Syndromes, Focus on ME/CFS, Tuesday April 12, 12:00 PM Eastern Time
Speakers Doctors David Systrom, Nancy Klimas, and Benjamin Natelson.
Recover is the NIH research project on Long Covid. The seminar will be available on the Recover website afterwards.
NIH Recover website here Seminar registration here Thread here
.............
Research partipation
University of York, UK - STIMULATE-ICP - Online questionnaire based study about Integrated Care Pathways for chronic illnesses. An opportunity to give feedback to health psychologists, with a biopsychosocial view of chronic illness, about your views on optimal health care provision for Long Covid, ME/CFS and other chronic diseases.
Questionnaire here Thread here
DePaul University A Study of COVID, Long COVID, ME, CFS and Post-Exertional Malaise
Leonard A. Jason is recruiting participants over 18 who have had COVID-19. "The estimated completion time is 30 minutes. We hope that this set of questionnaires will help us better understand some of the Long COVID symptoms as well as those of ME and CFS".
Survey here Thread here
...........
Research news
USA - Bateman Horne Center
The latest blog post from the Bateman Horne Center has information about four new clinical trials in 2022. "That all four of these trials are for ME/CFS and Long COVID is a testament to the growing awareness the pandemic has caused." More details about recruiting patients for these studies can be found on their website.
Article here Thread here
Solve M.E. research grants
The Ramsay Research Grant Program is now accepting applications for grants to study ME/CFS and Long Covid. Application deadline is May 23, 2022.
Announcement here Thread here
UK - DecodeME The latest webinar was on the science behind the research. It will be available on the website.
Website here Thread here
ME Research UK has funded a PhD student to work on DecodeME.
Article here Thread here
Body Politic webinar "The Latest on Long Covid Research" with Dr. Akiko Iwasaki
Researcher Dr. Iwasaki talks about the multiple Long Covid studies she's involved in and findings so far. In the Q&A session she talks about their focus on those who have had Long Covid for over two years. "That's the population we're targeting and I think it's very important to study those because I believe it's a different type of disease driver from people who recover after three months, after six months or after eight months. What we're studying right now is pretty much ME/CFS."
Webinar here Thread here
Nature correspondence Studying severe long COVID to understand post-infectious disorders beyond COVID-19
Petter Brodin et al presents their The COVID Human Genetic Effort and says their results "would probably be applicable beyond COVID-19 and will hopefully provide important insights of relevance into other post-infectious disorders such as myalgic encephalomyelitis".
Article here Thread here
Trial by Error by David Tuller More on the REGAIN Trial for Long COVID Patients
Despite researchers behind this study on exercise and therapy as Long Covid treatments having met with both Physios for ME and #MEAction who raised concern about PEM, the protocol states: Due to the limited knowledge of the long-term health problems in COVID-19 survivors, there are no Serious Adverse Events that would be expected in exercise intervention for the population included in this study.”
Article here Thread here
.........
Research
General Hospital Psychiatry
“Using clinical patient characteristics to predict treatment outcome of cognitive behavior therapies for individuals with medically unexplained symptoms: A systematic review and meta-analysis” by Sarter et al.
According to this review, patients with medically unexplained symptoms who had higher symptom intensity, longer symptom duration, and what the authors call “more potential symptom-related incentives”, reported less benefit from cognitive behavioral therapy.
Article here Thread here
.........
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
USA The White House launched a national plan for "addressing the long-term effects of COVID-19." Secretary Xavier Becerra of the HHS (Health and Human Services) will release a National Research Action Plan within four months. ME/CFS, dysautonomia, and MCAS are mentioned briefly in a fact sheet associated with this announcement.
Announcement here Thread here
UK - NHS Scotland has updated its webite aimed at patients, NHS Inform, to reflect the new NICE ME/CFS guideline. It provides a simplified version of NICE advice and directs patients to Action for ME for further information.
Website here Thread here
Norway There was an interpellation at the Norwegian Parliament to the Minister of Health about what she will do to improve the health care services for ME patients after a newspaper article wrote that a majority of ME patients deteriorate from rehabilitation and work assessment. Sadly, the Minister's reply was disappointing. Researchers from a project on health care services and ME (Tjenesten og MEg) wrote an opinion letter stating that the situation is problematic for a welfare state and that there's no indication things will improve by procrastination.
Opinion piece here (paywalled) Thread here
USA "Solve Long Covid Initiative Press Event: Long Covid Impact on U.S. Adults"
Solve M.E. held a press event on April 5 to talk about the release of their whitepaper on Long Covid. The panel discussed the financial, social, and emotional impact of Long Covid and post-infection illnesses. A recording of this event (one hour) is now available online.
Paper (PDF) here Video here Thread here
Switzerland
The Swiss national broadcaster SRF has created a documentary about ME/CFS titled: “Das Chronische Fatigue-Syndrom – ein Albtraum für Betroffene.” The film shows the difficulties of Dejan and Cassandra, two patients with ME/CFS, in getting recognition for their illness.
Documentary here Thread here
HealthSense
“Why deny patients with chronic fatigue syndrome treatments that can help?”
Peter White reiterates his arguments in defending the findings of the PACE trial on which he was the lead researcher. His article responds to a previous piece by Caroline Struthers published in the HealthWatch newsletter titled “It is not only drugs and devices that can harm.”
Article here Thread here
National Geographic "Can this 19th-century health practice help with long COVID?"
On rediscovering convalescence as an approach to post-viral illness. Co-director of Johns Hopkins' Post-Acute COVID-19 Program, Alba Miranda Azola says "We have found that patients with post-viral fatigue that push through and enter a crash cycle have overall functional decline".
Article here Thread here
USA - The Washington Post "How long covid is accelerating a revolution in medical research"
On the beneficial partnership between Long Covid patient advocates and researchers. Also goes into some of the history of patient advocacy and includes a quote from Walter Koroshetz (NIH) saying that the research initiative RECOVER is aimed at also understanding post-viral conditions as ME/CFS.
Article here Thread here
UK - The Guardian "I have long Covid and despair that the UK government ignores its blight"
Good opinion piece by Ravi Veriah Jacques about the severity of Long Covid and how under investment in research into post viral illnesses such as ME has left the UK unprepared for Long Covid. Also tells of how the PACE trial and the psychologisation of ME have hindered development.
Opinion piece here Thread here
Germany - Zeit Online has a long article on Long Covid including patients' experiences, doctors' responses, and some treatments being tried.
Article here (in German) Thread with some English translation here
.........
Fundraising
USA - Dr David Tuller Trial By Error: Reporting on ME, CFS, ME/CFS, "Medically Unexplained Symptoms," and now Long Covid
The University of California, Berkeley, is crowdfunding to support the post of Dr David Tuller during the month of April with a goal of $67,000. "My output for this project is a combination of posting on Virology Blog, writing articles for various news organizations, and working on academic papers for peer review. I also expect to be posting more video interviews with people involved in the field."
Donate here Thread here
UK - Dr Keith Geraghty is crowdfunding to support his work researching ME/CFS at the University of Manchester. Target £12,000.
"I work on the interface between primary care medicine (so when you see your GP or get medical care in the community) and health psychology. This covers a wide variety of topics, but I boil it down to trying to get drs to treat ME patients better today, whilst we seek out biomedical understanding of the disease."
Donate here Thread here
.........
Coming Events
USA National Institutes of Health (NIH)
RECOVER Seminar: Commonalities with Other Disorders and Post-viral Syndromes, Focus on ME/CFS, Tuesday April 12, 12:00 PM Eastern Time
Speakers Doctors David Systrom, Nancy Klimas, and Benjamin Natelson.
Recover is the NIH research project on Long Covid. The seminar will be available on the Recover website afterwards.
NIH Recover website here Seminar registration here Thread here
.............
Research partipation
University of York, UK - STIMULATE-ICP - Online questionnaire based study about Integrated Care Pathways for chronic illnesses. An opportunity to give feedback to health psychologists, with a biopsychosocial view of chronic illness, about your views on optimal health care provision for Long Covid, ME/CFS and other chronic diseases.
Questionnaire here Thread here
DePaul University A Study of COVID, Long COVID, ME, CFS and Post-Exertional Malaise
Leonard A. Jason is recruiting participants over 18 who have had COVID-19. "The estimated completion time is 30 minutes. We hope that this set of questionnaires will help us better understand some of the Long COVID symptoms as well as those of ME and CFS".
Survey here Thread here
...........
Research news
USA - Bateman Horne Center
The latest blog post from the Bateman Horne Center has information about four new clinical trials in 2022. "That all four of these trials are for ME/CFS and Long COVID is a testament to the growing awareness the pandemic has caused." More details about recruiting patients for these studies can be found on their website.
Article here Thread here
Solve M.E. research grants
The Ramsay Research Grant Program is now accepting applications for grants to study ME/CFS and Long Covid. Application deadline is May 23, 2022.
Announcement here Thread here
UK - DecodeME The latest webinar was on the science behind the research. It will be available on the website.
Website here Thread here
ME Research UK has funded a PhD student to work on DecodeME.
Article here Thread here
Body Politic webinar "The Latest on Long Covid Research" with Dr. Akiko Iwasaki
Researcher Dr. Iwasaki talks about the multiple Long Covid studies she's involved in and findings so far. In the Q&A session she talks about their focus on those who have had Long Covid for over two years. "That's the population we're targeting and I think it's very important to study those because I believe it's a different type of disease driver from people who recover after three months, after six months or after eight months. What we're studying right now is pretty much ME/CFS."
Webinar here Thread here
Nature correspondence Studying severe long COVID to understand post-infectious disorders beyond COVID-19
Petter Brodin et al presents their The COVID Human Genetic Effort and says their results "would probably be applicable beyond COVID-19 and will hopefully provide important insights of relevance into other post-infectious disorders such as myalgic encephalomyelitis".
Article here Thread here
Trial by Error by David Tuller More on the REGAIN Trial for Long COVID Patients
Despite researchers behind this study on exercise and therapy as Long Covid treatments having met with both Physios for ME and #MEAction who raised concern about PEM, the protocol states: Due to the limited knowledge of the long-term health problems in COVID-19 survivors, there are no Serious Adverse Events that would be expected in exercise intervention for the population included in this study.”
Article here Thread here
.........
Research
General Hospital Psychiatry
“Using clinical patient characteristics to predict treatment outcome of cognitive behavior therapies for individuals with medically unexplained symptoms: A systematic review and meta-analysis” by Sarter et al.
According to this review, patients with medically unexplained symptoms who had higher symptom intensity, longer symptom duration, and what the authors call “more potential symptom-related incentives”, reported less benefit from cognitive behavioral therapy.
Article here Thread here
.........
S4ME social media: Facebook, Twitter and YouTube
Week beginning 11th April 2022
News, articles and advocacy
World ME Alliance
The European ME Coalition (EMEC), the ME/CFS advocacy group focusing on the European level, has joined the World ME Alliance.
Article here Thread here
Austria
On 9 May, the Medical University of Vienna will hold a CCCFS Symposium about ME/CFS. The symposium will give interested doctors the opportunity to participate in further training on ME/CFS and long-COVID.
Article here Thread here
UK - Observer letters PACE authors Profs. White, Chalder and Sharpe respond to last week's Guardian article about Long Covid by Ravi Veriah Jacques which criticised the PACE trial. They repeat their discredited claims about effectiveness of CBT/GET and their criticisms of NICE, and say CBT/GET should be researched for Long Covid.
Letter here Thread here
Trial By Error by David Tuller
PACE Team Stages a Comeback Tour
PACE authors have tried to defend their trial in responses to articles by Caroline Struthers and Ravi Veria Jacques and they seem to attempt to extend their GET/CBT approach to Long Covid. Tuller also highlights that they didn't adhere to the Declaration of Helsinki when choosing not to disclose to the PACE trial participants their conflicts of interests by having financial ties to insurance companies.
Article here Thread here
The UK Health Research Authority's Missteps on PACE and the Declaration of Helsinki
Tuller responds to problematic passages from the Health research Authority's review from 2019 of the PACE trial concerning the Declaration of Helsinki. "In sum, by not providing key information to trial participants, the PACE investigators failed to obtain fully informed consent – at least per the promises they made in their own protocol. And the most powerful players in the UK medical and academic establishments, including the HRA, have let them get away with this."
Article here Thread here
UK BACME The British Association of Clinicians in ME/CFS is developing 3 new Advisory Groups as part of its Patient and Public Involvement commitment - Young People 16-19, Carers, and Severely Affected.
From the Yorkshire fatigue clinic Facebook page: 'If you know of patients or carers present or past who might be interested or would like further information about the project please contact Ceri Rutter BACME PPI lead via info@bacme.info'
Thread here
France
MillionsMissingFrance held an event on 10 April in Toulouse to raise awareness of ME/CFS. The organization plans to hold other millions missing events in the month of May.
Article here Thread here
Paradigms podcast “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications”
Both interviewees are ME/CFS researchers and both have a family member with ME/CFS. They discussed Friedman's invention of the term PAPIS (Post Active Phase of Infection Syndromes) as an umbrella term to include ME/CFS, Long Covid and other conditions with overlapping symtoms. The discuss research funding, possible biological explanations and treatments.
Podcast here Thread here
Sweden The newspaper Göteborgs-posten has an article about 24 year old Benjamin who suffers from ME and another article about how Post Covid can make amends for ME patients. The newspaper Sundsvalls Tidning has an article about Björn Eklund who is walking to raise awareness for better care for ME patients in Sweden.
Articles here, here and here (all paywalled) Thread here
............
Useful resources
Podcast JOSPT Insights: Ep 77: Less is more - the mindset shift clinicians need for long COVID, ME and other post-viral illness, with Dr. Todd Davenport
In this first episode of two with Dr. Todd Davenport, he talks about post-exertion symptom exacerbation, fatigue, physical activity and exercise.
Podcast here Thread here
................
ME Awareness events May 2022
Emerge Australia May awareness week webinar series with the Emerge CEO, Medical Director, Nurse Educator, Research Manager and others.
Topics include the basics of ME/CFS, Q&A, building your Post-Exertional Malaise (PEM) Toolkit, and research.
Details here Thread here
#MEAction has announced their plans for #MillionsMissing 2022. There will be two separate events. On May 12th (10 am PDT/1 pm EDT/6 pm BST) there will be a global, virtual (online) event. In September there are plans for a large in-person protest. You can RSVP for the May 12th online event now, and sign up to get updates about the September event.
Announcement here Thread here
USA - Solve M.E. has announced details for Advocacy Month 2022. Volunteers are needed for virtual meetings with Congress. No experience necessary, training will be provided. Register by April 22.
Announcement here Thread here
...............
Fundraising
See last week's news for details of how to donate to fundraisers to support the work of Dr David Tuller and Dr Keith Geraghty. Both are open to the end of April.
............
Research news
USA MECFSnet webinar NIH and Columbia University
"Metabolic and immunological perturbations during ME/CFS"
Derya Unutmaz, PhD, the Principal Investigator and Director for the JAX Center for ME/CFS, and the team at JAX discuss their latest findings. Clinical samples have been taken at 3 time points over several years from patients and controls. Immune, metabolomic and microbiome profiles are analysed in the lab and computationally. Findings so far include microbiome dysbiosis in those sick less than 4 years, and metabolic dysbiosis in those sick more than 10 years.
Duration 1 hr 16min.
Video here Thread here
UK DecodeME update includes news that they are no longer working with the Solve You and ME register due to technical problems. The team are creating a new online system and have had useful feedback from the first group of participants. Once the online system is finalised, more will be invited for a testing phase before full rollout.
Update here Thread here
Guidelines for the Design of Clinical Studies in ME/CFS
The CAC–Study Feasibility working group, part of the NIH Community Advisory Committee for ME/CFS, has developed a reference guide to "aid researchers in the design of clinical studies and the development of IRB [institutional review board] protocols for studies involving the ME/CFS population."
Announcement here Thread here
.............
Research
Frontiers in Neuroendocrinology
Review article "The underlying sex differences in neuroendocrine adaptations relevant to ME/CFS" Thomas et al
The 3:1 female:male prevalence ratio of ME/CFS and hormonal changes over women's lifetimes, as well as findings relating to adrenal hormones suggest these play a role in ME/CFS. The abstract concludes: 'Further attention must be paid to sex, age, and steroid biology in ME/CFS.'
Article here Thread here
Psychosomatic Medicine
“Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction” by Friedberg et al.
This study followed up on 148 ME/CFS patients using weekly web diaries that recorded symptoms and activity patterns. Participants reporting non-improvement showed greater autonomic dysfunction but no difference in activity pattern compared to participants who did improve.
Article here Thread here
Health Care for Women International
“Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence” by Krabbe et al.
The authors conducted interviews with 13 women (aged 16–30 years) who had severe ME/CFS in childhood but who subsequently recovered.
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
“Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications” by Mirin et al.
The authors estimate that ME/CFS prevalence could rise to between 5 and 9 million patients in the United States due to COVID-19 and its resulting post-acute sequalae. This would incur an annual U.S. economic impact of $149 to $362 billion in medical expenses and lost income.
Article here Thread here
...........
Other items of interest
USA A defamation lawsuit against the Netflix docuseries Afflicted has been allowed to proceed. The show followed the struggles of people living with chronic illness (one has an ME/CFS diagnosis) but the final edit "advanced narratives that the conditions were actually psychosomatic."
Article here Thread here
Oxford Academic - Clinical Infectious Diseases
"Risk factors and multidimensional assessment of long COVID fatigue: a nested case-control study" by Margalit et al
47% of 141 patients attending a post Covid clinic assessed 8 months after infection had significant Long Covid fatigue. This was associated with several factors including lower heart rate and oxygen consumption at peak exercise on a CPET, memory impairment, poor sleep and mood, and greater limitation in daily activities.
Paper here Thread here
Psychology Today
“Long COVID and Gaslighting” by Perkin and Jason
The authors argue that some patients with long COVID may experience gaslighting related to their symptoms. The article claims that these patients are twice victimized, first by their symptoms and then by the reaction of others to their illness.
Article here Thread here
Science 7 minute video on Long Covid including interview with among others Dr. Avindra Nath who is starting a clinical trial on immune modulating drugs and says millions of people are suffering from similar diseases such as post lyme syndrome, gulf war syndrome and ME/CFS.
Video here Thread here
Podcast Follow the Science with Faye Flam
Interview with Long Covid researcher Ziad Al-Aly. Several mentions of ME and that the pandemic is an opportunity to learn more about post viral illness.
Podcast here Thread here
The Guardian Vaccines are no match for long Covid. Treating it is science's next great challenge
Opinion piece by immunology professor Danny Altman on the severity and scale of Long Covid. "If we renege on mitigations as each round of infection draws more of all ages into chronic disability, this may be the blunder that we rue for decades to come".
Opinion piece here Thread here
............
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
World ME Alliance
The European ME Coalition (EMEC), the ME/CFS advocacy group focusing on the European level, has joined the World ME Alliance.
Article here Thread here
Austria
On 9 May, the Medical University of Vienna will hold a CCCFS Symposium about ME/CFS. The symposium will give interested doctors the opportunity to participate in further training on ME/CFS and long-COVID.
Article here Thread here
UK - Observer letters PACE authors Profs. White, Chalder and Sharpe respond to last week's Guardian article about Long Covid by Ravi Veriah Jacques which criticised the PACE trial. They repeat their discredited claims about effectiveness of CBT/GET and their criticisms of NICE, and say CBT/GET should be researched for Long Covid.
Letter here Thread here
Trial By Error by David Tuller
PACE Team Stages a Comeback Tour
PACE authors have tried to defend their trial in responses to articles by Caroline Struthers and Ravi Veria Jacques and they seem to attempt to extend their GET/CBT approach to Long Covid. Tuller also highlights that they didn't adhere to the Declaration of Helsinki when choosing not to disclose to the PACE trial participants their conflicts of interests by having financial ties to insurance companies.
Article here Thread here
The UK Health Research Authority's Missteps on PACE and the Declaration of Helsinki
Tuller responds to problematic passages from the Health research Authority's review from 2019 of the PACE trial concerning the Declaration of Helsinki. "In sum, by not providing key information to trial participants, the PACE investigators failed to obtain fully informed consent – at least per the promises they made in their own protocol. And the most powerful players in the UK medical and academic establishments, including the HRA, have let them get away with this."
Article here Thread here
UK BACME The British Association of Clinicians in ME/CFS is developing 3 new Advisory Groups as part of its Patient and Public Involvement commitment - Young People 16-19, Carers, and Severely Affected.
From the Yorkshire fatigue clinic Facebook page: 'If you know of patients or carers present or past who might be interested or would like further information about the project please contact Ceri Rutter BACME PPI lead via info@bacme.info'
Thread here
France
MillionsMissingFrance held an event on 10 April in Toulouse to raise awareness of ME/CFS. The organization plans to hold other millions missing events in the month of May.
Article here Thread here
Paradigms podcast “Dr. Ken Friedman and Dr. David Maughan – ME/CFS and Long Haul Covid Similarities and Ramifications”
Both interviewees are ME/CFS researchers and both have a family member with ME/CFS. They discussed Friedman's invention of the term PAPIS (Post Active Phase of Infection Syndromes) as an umbrella term to include ME/CFS, Long Covid and other conditions with overlapping symtoms. The discuss research funding, possible biological explanations and treatments.
Podcast here Thread here
Sweden The newspaper Göteborgs-posten has an article about 24 year old Benjamin who suffers from ME and another article about how Post Covid can make amends for ME patients. The newspaper Sundsvalls Tidning has an article about Björn Eklund who is walking to raise awareness for better care for ME patients in Sweden.
Articles here, here and here (all paywalled) Thread here
............
Useful resources
Podcast JOSPT Insights: Ep 77: Less is more - the mindset shift clinicians need for long COVID, ME and other post-viral illness, with Dr. Todd Davenport
In this first episode of two with Dr. Todd Davenport, he talks about post-exertion symptom exacerbation, fatigue, physical activity and exercise.
Podcast here Thread here
................
ME Awareness events May 2022
Emerge Australia May awareness week webinar series with the Emerge CEO, Medical Director, Nurse Educator, Research Manager and others.
Topics include the basics of ME/CFS, Q&A, building your Post-Exertional Malaise (PEM) Toolkit, and research.
Details here Thread here
#MEAction has announced their plans for #MillionsMissing 2022. There will be two separate events. On May 12th (10 am PDT/1 pm EDT/6 pm BST) there will be a global, virtual (online) event. In September there are plans for a large in-person protest. You can RSVP for the May 12th online event now, and sign up to get updates about the September event.
Announcement here Thread here
USA - Solve M.E. has announced details for Advocacy Month 2022. Volunteers are needed for virtual meetings with Congress. No experience necessary, training will be provided. Register by April 22.
Announcement here Thread here
...............
Fundraising
See last week's news for details of how to donate to fundraisers to support the work of Dr David Tuller and Dr Keith Geraghty. Both are open to the end of April.
............
Research news
USA MECFSnet webinar NIH and Columbia University
"Metabolic and immunological perturbations during ME/CFS"
Derya Unutmaz, PhD, the Principal Investigator and Director for the JAX Center for ME/CFS, and the team at JAX discuss their latest findings. Clinical samples have been taken at 3 time points over several years from patients and controls. Immune, metabolomic and microbiome profiles are analysed in the lab and computationally. Findings so far include microbiome dysbiosis in those sick less than 4 years, and metabolic dysbiosis in those sick more than 10 years.
Duration 1 hr 16min.
Video here Thread here
UK DecodeME update includes news that they are no longer working with the Solve You and ME register due to technical problems. The team are creating a new online system and have had useful feedback from the first group of participants. Once the online system is finalised, more will be invited for a testing phase before full rollout.
Update here Thread here
Guidelines for the Design of Clinical Studies in ME/CFS
The CAC–Study Feasibility working group, part of the NIH Community Advisory Committee for ME/CFS, has developed a reference guide to "aid researchers in the design of clinical studies and the development of IRB [institutional review board] protocols for studies involving the ME/CFS population."
Announcement here Thread here
.............
Research
Frontiers in Neuroendocrinology
Review article "The underlying sex differences in neuroendocrine adaptations relevant to ME/CFS" Thomas et al
The 3:1 female:male prevalence ratio of ME/CFS and hormonal changes over women's lifetimes, as well as findings relating to adrenal hormones suggest these play a role in ME/CFS. The abstract concludes: 'Further attention must be paid to sex, age, and steroid biology in ME/CFS.'
Article here Thread here
Psychosomatic Medicine
“Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction” by Friedberg et al.
This study followed up on 148 ME/CFS patients using weekly web diaries that recorded symptoms and activity patterns. Participants reporting non-improvement showed greater autonomic dysfunction but no difference in activity pattern compared to participants who did improve.
Article here Thread here
Health Care for Women International
“Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence” by Krabbe et al.
The authors conducted interviews with 13 women (aged 16–30 years) who had severe ME/CFS in childhood but who subsequently recovered.
Article here Thread here
Fatigue: Biomedicine, Health & Behavior
“Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications” by Mirin et al.
The authors estimate that ME/CFS prevalence could rise to between 5 and 9 million patients in the United States due to COVID-19 and its resulting post-acute sequalae. This would incur an annual U.S. economic impact of $149 to $362 billion in medical expenses and lost income.
Article here Thread here
...........
Other items of interest
USA A defamation lawsuit against the Netflix docuseries Afflicted has been allowed to proceed. The show followed the struggles of people living with chronic illness (one has an ME/CFS diagnosis) but the final edit "advanced narratives that the conditions were actually psychosomatic."
Article here Thread here
Oxford Academic - Clinical Infectious Diseases
"Risk factors and multidimensional assessment of long COVID fatigue: a nested case-control study" by Margalit et al
47% of 141 patients attending a post Covid clinic assessed 8 months after infection had significant Long Covid fatigue. This was associated with several factors including lower heart rate and oxygen consumption at peak exercise on a CPET, memory impairment, poor sleep and mood, and greater limitation in daily activities.
Paper here Thread here
Psychology Today
“Long COVID and Gaslighting” by Perkin and Jason
The authors argue that some patients with long COVID may experience gaslighting related to their symptoms. The article claims that these patients are twice victimized, first by their symptoms and then by the reaction of others to their illness.
Article here Thread here
Science 7 minute video on Long Covid including interview with among others Dr. Avindra Nath who is starting a clinical trial on immune modulating drugs and says millions of people are suffering from similar diseases such as post lyme syndrome, gulf war syndrome and ME/CFS.
Video here Thread here
Podcast Follow the Science with Faye Flam
Interview with Long Covid researcher Ziad Al-Aly. Several mentions of ME and that the pandemic is an opportunity to learn more about post viral illness.
Podcast here Thread here
The Guardian Vaccines are no match for long Covid. Treating it is science's next great challenge
Opinion piece by immunology professor Danny Altman on the severity and scale of Long Covid. "If we renege on mitigations as each round of infection draws more of all ages into chronic disability, this may be the blunder that we rue for decades to come".
Opinion piece here Thread here
............
S4ME social media: Facebook, Twitter and YouTube
Week beginning 18th April 2022
News, articles and advocacy
UK ME Research Collaborative (MERC, formerly CMRC), is hoping to run a scientific conference in 2022 for researchers, clinicians, patients and carers. Suggestions for possible speakers are invited on the forum thread. Topics are expected to include both ME/CFS and Long Covid.
Thread here
Australia With an upcoming election, Emerge Australia is encouraging people to email their 'State of the Nation' report to their MP.
Emerge report here Thread here
Media articles are publicising the establishment of Long Covid clinics that, along with ME/CFS clinics, are still using the discredited GET/CBT approach to treatment.
Media article here Thread here
UK - Guidelines in Practice A website for UK health professionals
"Key learning points: revised NICE guidance on ME/CFS" by Dr David Strain.
Dr Strain summarises key points from the new NICE guideline, covering 'the key features of ME/CFS, assessment strategies to exclude alternative diagnoses, and a pragmatic approach to supporting patients with ME/CFS'.
Article here Thread here
Sweden
A TV morning show had a half hour segment about ME. ME sufferer Niklas and his family talk about living with the disease and how it affects the whole family. Also Bo Bertilson who is leading an ME research center in Stockholm provides some general information. The blog "Mitt eremitage" has a critical blog post about the TV segment and other recent ME coverage in Swedish media criticising the doctors interviewed for dedramatising the disease.
TV segment here Mitt eremitage blog here Thread here
Author Fredrik Blomqvist's wife is suffering from ME, and talks about this in an interview with the local newspaper Mariefredsposten. In an Instagram post about the interview he calls for more research, more knowledge and better care for ME patients in Sweden.
Instagram post here Thread here
Trial by Error by David Tuller Two Reports on the Financial Burden of Long Covid and Its Impact on ME/CFS Prevalence
On the Solve Long Covid Initiative paper "Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost" which estimates long Covid costs to be between $386-511 billion and prevalence to be between 7-13% of the total US population.
The paper "Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications" by Jason, Mirin & Dimmock includes that the increase of ME/CFS prevalence "translates to an annual economic burden of ME/CFS of $149 to $362 billion in medical expenses and lost income, an amount that does not account for the economic costs associated with disability services and social services as well as lost income on the part of caretakers.”
Article here Thread here
Podcast JOSPT Insights Ep 78: Managing the condition that breaks all the rules - pacing and post-exertion symptoms exacerbation, with Dr Todd Davenport
".. we dive into pacing - the less is more approach to managing post-exertion symptom exacerbation that will challenge you to think differently about how you prescribe exercise and what the goals of therapy are for people who are living with post-exertion symptoms exacerbation"
Podcast here Thread here
David Tuller Davenport Discusses PEM/PESE Blog Series
A YouTube video where Tuller interviews Dr. Davenport on the JOSPT series titled "Lessons from ME/CFS for Long COVID". Duration: 21 minutes.
Interview here Thread here
The Psychologist
“We need to talk about Long-Covid.”
Dr Andy Siddaway talks about the role psychologists play in managing long-covid.
Article here Thread here
CBT Watch "Psychologising Long-Covid and Anything Else"
Under a heading ‘Long-Covid: interventions not proven’ the May issue of The Psychologist published a letter by Mike Scott and Joan Crawford. They were responding to Dr Siddaway’s article ”We need to talk about Long-Covid” in the March issue. They argue that the biopsychosocial model used to justify psychological intervention for Long Covid, is unfalsifiable. 'It serves the interests of the powerholders of psychological therapies to transmute the physical disorders into candidates for psychological intervention. An extending of Empires.'
The May issue also includes an interview with Jo Daniels, the newly appointed Chair of the Scientific Committee of the British Association for Behavioural and Cognitive Psychotherapy (BABCP) outlining her mission to apply CBT to all long-term conditions (LTC), claiming “It is now commonly accepted that CBT ‘works’ to a greater or lesser extent for most physical health conditions”.
Critique here Thread here
...............
Fundraising
Dr David Tuller - final week to donate
The University of California, Berkeley, is crowdfunding to support the post of Dr David Tuller during the month of April with a goal of $67,000.
Total raised so far just over $48,000.
"My output for this project is a combination of posting on Virology Blog, writing articles for various news organizations, and working on academic papers for peer review. I also expect to be posting more video interviews with people involved in the field."
Donate here Thread here
Dr Keith Geraghty is crowdfunding to support his work researching ME/CFS at the University of Manchester. Target £12,000. Nearly £10,000 raised so far.
"I work on the interface between primary care medicine (so when you see your GP or get medical care in the community) and health psychology. This covers a wide variety of topics, but I boil it down to trying to get drs to treat ME patients better today, whilst we seek out biomedical understanding of the disease."
Donate here Thread here
UK Invest in ME Research
Professor Carding leads the Gut Microbes in Health research programme at the Quadram Institute and part of his research is focused on ME/CFS. He is planning a UK coast to coast walk in June to raise funds for IiMER. Target £1000.
Blog here Donate here Thread here
................
Research news
Yale school of Medicine has launched a Center for Infection & Immunity with Prof. Akiko Iwasaki as director. The center will investigate fundamental mechanisms of infection and immunity and ME/CFS is among the center's focus areas.
Website here Thread here
UK DecodeME webinar 'On this month’s webinar Chris Ponting and Shona Kerr talk about the science behind the DecodeME study.'
Now available as a YouTube video, audio and transcript. Duration 1 hour. Ponting's talk is from approx. 3 to 17 minutes, followed by Q&A.
Video here Website with links here Thread here
People over 16 who live in the UK and have a ME/CFS diagnosis are still being encouraged to sign up to participate in the study if they haven't done so already.
Sign up here
Norway A medical newspaper has an article about an ongoing clinical trial on fecal transplantation and ME; The Comeback Study. "Studies have been carried out in other countries that look at the gut flora in those who have ME compared with healthy controls, while we have looked at whether you get better by adding new gut flora" says researcher Linn Skjevling.
Article here Thread here
Clinical trials
"A Study to Evaluate ASP0367 in Participants With Reduced Maximum Oxygen Uptake Due to Poor Systemic Oxygen Extraction"
In Dr David Systrom's research with people with ME/CFS and related conditions using invasive cardiopulmonary exercise tests, he found a subset had reduced oxygen uptake. This study is testing an experimental drug targeting mitochondrial function in these patients, funded by the drug company. The study, with 40 patients randomised to receive the drug or placebo, is due to be completed in 2023.
Clinical trials here Health Rising article here Thread here
BJGP Life
“Chronic fatigue syndrome/myalgic encephalomyelitis: an ‘invisible’ illness that benefits from a relationship-based care approach”
Carolyn Chew-Graham and other healthcare professionals talk about their study of patients’ experiences of ME/CFS focusing on the relationships they had with health and social care professionals.
Article here Thread here
.................
Research
Frontiers in Neuroscience - Brain Imaging Methods
"Alteration of Cortical Volume and Thickness in ME/CFS" by Thapaliya et al
18 ME/CFS patients (ICC criteria) and 26 health controls.
'Our study demonstrated different cortical volume and thickness in ME/CFS patients and showed abnormal cortical volume and thickness regressions with key symptoms of ME/CFS patients.' Also 'Region based analysis of sub-cortical volumes found that amygdala volume (p = 0.002) was significantly higher in ME/CFS patients compared with HC'.
Paper here Thread here
Disability and Rehabilitation
“Patients with chronic fatigue syndrome can improve with graded exercise therapy: response to Vink et al. 2022” by Chalder et al.
Trudie Chalder and colleagues respond to a critical letter by Vink et al. about the effect of graded exercise therapy in routine clinical practice.
Letter here Thread here
.................
Other items of interest
Morning Consult Most Long COVID Patients Are Seeking Help From Their Primary Care Doctor
Includes an interview with Dr Lucinda Bateman who says she hopes what we learn from long COVID will help patients who've been sick for decades, and that keeping public attention and funding coming in is like "herding cats".
Article here Thread here
The New York Times Pushing 'Long Covid' Sufferers Too Hard Could Cause Them to Crash
Opinion piece by Peter Coy on how employers are not equipped to provide accommodations for people suffering from Long Covid. Quotes Emily Taylor, vice president of Solve M.E., refers to the Solve Long Covid Initiative report and how accommodations for Long Covid overlaps with accommodations for CFS.
Article here Thread here
Washington Post "She went to one doctor, then another and another"
Profile of a Long Covid patient who first got sick March 2020 and has been infected multiple times. Brief mention of ME/CFS.
Article here Thread here
Independent Sage Video of the April 22 session discussing Long Covid has been posted. The final question from the Q & A session focuses on ME/CFS (at about 59:25 timestamp).
Video here Thread here
USA A recording of the April 14 webinar from the Long Covid and Fatiguing Illness Recovery webinar series ("Autonomic/Cardiac Manifestations of Post-COVID Conditions") is now available.
Video here Thread here
Podcast Follow the Science - Cracking the Mystery of Long Covid w/Bruce Levy
Podcast here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
UK ME Research Collaborative (MERC, formerly CMRC), is hoping to run a scientific conference in 2022 for researchers, clinicians, patients and carers. Suggestions for possible speakers are invited on the forum thread. Topics are expected to include both ME/CFS and Long Covid.
Thread here
Australia With an upcoming election, Emerge Australia is encouraging people to email their 'State of the Nation' report to their MP.
Emerge report here Thread here
Media articles are publicising the establishment of Long Covid clinics that, along with ME/CFS clinics, are still using the discredited GET/CBT approach to treatment.
Media article here Thread here
UK - Guidelines in Practice A website for UK health professionals
"Key learning points: revised NICE guidance on ME/CFS" by Dr David Strain.
Dr Strain summarises key points from the new NICE guideline, covering 'the key features of ME/CFS, assessment strategies to exclude alternative diagnoses, and a pragmatic approach to supporting patients with ME/CFS'.
Article here Thread here
Sweden
A TV morning show had a half hour segment about ME. ME sufferer Niklas and his family talk about living with the disease and how it affects the whole family. Also Bo Bertilson who is leading an ME research center in Stockholm provides some general information. The blog "Mitt eremitage" has a critical blog post about the TV segment and other recent ME coverage in Swedish media criticising the doctors interviewed for dedramatising the disease.
TV segment here Mitt eremitage blog here Thread here
Author Fredrik Blomqvist's wife is suffering from ME, and talks about this in an interview with the local newspaper Mariefredsposten. In an Instagram post about the interview he calls for more research, more knowledge and better care for ME patients in Sweden.
Instagram post here Thread here
Trial by Error by David Tuller Two Reports on the Financial Burden of Long Covid and Its Impact on ME/CFS Prevalence
On the Solve Long Covid Initiative paper "Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost" which estimates long Covid costs to be between $386-511 billion and prevalence to be between 7-13% of the total US population.
The paper "Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications" by Jason, Mirin & Dimmock includes that the increase of ME/CFS prevalence "translates to an annual economic burden of ME/CFS of $149 to $362 billion in medical expenses and lost income, an amount that does not account for the economic costs associated with disability services and social services as well as lost income on the part of caretakers.”
Article here Thread here
Podcast JOSPT Insights Ep 78: Managing the condition that breaks all the rules - pacing and post-exertion symptoms exacerbation, with Dr Todd Davenport
".. we dive into pacing - the less is more approach to managing post-exertion symptom exacerbation that will challenge you to think differently about how you prescribe exercise and what the goals of therapy are for people who are living with post-exertion symptoms exacerbation"
Podcast here Thread here
David Tuller Davenport Discusses PEM/PESE Blog Series
A YouTube video where Tuller interviews Dr. Davenport on the JOSPT series titled "Lessons from ME/CFS for Long COVID". Duration: 21 minutes.
Interview here Thread here
The Psychologist
“We need to talk about Long-Covid.”
Dr Andy Siddaway talks about the role psychologists play in managing long-covid.
Article here Thread here
CBT Watch "Psychologising Long-Covid and Anything Else"
Under a heading ‘Long-Covid: interventions not proven’ the May issue of The Psychologist published a letter by Mike Scott and Joan Crawford. They were responding to Dr Siddaway’s article ”We need to talk about Long-Covid” in the March issue. They argue that the biopsychosocial model used to justify psychological intervention for Long Covid, is unfalsifiable. 'It serves the interests of the powerholders of psychological therapies to transmute the physical disorders into candidates for psychological intervention. An extending of Empires.'
The May issue also includes an interview with Jo Daniels, the newly appointed Chair of the Scientific Committee of the British Association for Behavioural and Cognitive Psychotherapy (BABCP) outlining her mission to apply CBT to all long-term conditions (LTC), claiming “It is now commonly accepted that CBT ‘works’ to a greater or lesser extent for most physical health conditions”.
Critique here Thread here
...............
Fundraising
Dr David Tuller - final week to donate
The University of California, Berkeley, is crowdfunding to support the post of Dr David Tuller during the month of April with a goal of $67,000.
Total raised so far just over $48,000.
"My output for this project is a combination of posting on Virology Blog, writing articles for various news organizations, and working on academic papers for peer review. I also expect to be posting more video interviews with people involved in the field."
Donate here Thread here
Dr Keith Geraghty is crowdfunding to support his work researching ME/CFS at the University of Manchester. Target £12,000. Nearly £10,000 raised so far.
"I work on the interface between primary care medicine (so when you see your GP or get medical care in the community) and health psychology. This covers a wide variety of topics, but I boil it down to trying to get drs to treat ME patients better today, whilst we seek out biomedical understanding of the disease."
Donate here Thread here
UK Invest in ME Research
Professor Carding leads the Gut Microbes in Health research programme at the Quadram Institute and part of his research is focused on ME/CFS. He is planning a UK coast to coast walk in June to raise funds for IiMER. Target £1000.
Blog here Donate here Thread here
................
Research news
Yale school of Medicine has launched a Center for Infection & Immunity with Prof. Akiko Iwasaki as director. The center will investigate fundamental mechanisms of infection and immunity and ME/CFS is among the center's focus areas.
Website here Thread here
UK DecodeME webinar 'On this month’s webinar Chris Ponting and Shona Kerr talk about the science behind the DecodeME study.'
Now available as a YouTube video, audio and transcript. Duration 1 hour. Ponting's talk is from approx. 3 to 17 minutes, followed by Q&A.
Video here Website with links here Thread here
People over 16 who live in the UK and have a ME/CFS diagnosis are still being encouraged to sign up to participate in the study if they haven't done so already.
Sign up here
Norway A medical newspaper has an article about an ongoing clinical trial on fecal transplantation and ME; The Comeback Study. "Studies have been carried out in other countries that look at the gut flora in those who have ME compared with healthy controls, while we have looked at whether you get better by adding new gut flora" says researcher Linn Skjevling.
Article here Thread here
Clinical trials
"A Study to Evaluate ASP0367 in Participants With Reduced Maximum Oxygen Uptake Due to Poor Systemic Oxygen Extraction"
In Dr David Systrom's research with people with ME/CFS and related conditions using invasive cardiopulmonary exercise tests, he found a subset had reduced oxygen uptake. This study is testing an experimental drug targeting mitochondrial function in these patients, funded by the drug company. The study, with 40 patients randomised to receive the drug or placebo, is due to be completed in 2023.
Clinical trials here Health Rising article here Thread here
BJGP Life
“Chronic fatigue syndrome/myalgic encephalomyelitis: an ‘invisible’ illness that benefits from a relationship-based care approach”
Carolyn Chew-Graham and other healthcare professionals talk about their study of patients’ experiences of ME/CFS focusing on the relationships they had with health and social care professionals.
Article here Thread here
.................
Research
Frontiers in Neuroscience - Brain Imaging Methods
"Alteration of Cortical Volume and Thickness in ME/CFS" by Thapaliya et al
18 ME/CFS patients (ICC criteria) and 26 health controls.
'Our study demonstrated different cortical volume and thickness in ME/CFS patients and showed abnormal cortical volume and thickness regressions with key symptoms of ME/CFS patients.' Also 'Region based analysis of sub-cortical volumes found that amygdala volume (p = 0.002) was significantly higher in ME/CFS patients compared with HC'.
Paper here Thread here
Disability and Rehabilitation
“Patients with chronic fatigue syndrome can improve with graded exercise therapy: response to Vink et al. 2022” by Chalder et al.
Trudie Chalder and colleagues respond to a critical letter by Vink et al. about the effect of graded exercise therapy in routine clinical practice.
Letter here Thread here
.................
Other items of interest
Morning Consult Most Long COVID Patients Are Seeking Help From Their Primary Care Doctor
Includes an interview with Dr Lucinda Bateman who says she hopes what we learn from long COVID will help patients who've been sick for decades, and that keeping public attention and funding coming in is like "herding cats".
Article here Thread here
The New York Times Pushing 'Long Covid' Sufferers Too Hard Could Cause Them to Crash
Opinion piece by Peter Coy on how employers are not equipped to provide accommodations for people suffering from Long Covid. Quotes Emily Taylor, vice president of Solve M.E., refers to the Solve Long Covid Initiative report and how accommodations for Long Covid overlaps with accommodations for CFS.
Article here Thread here
Washington Post "She went to one doctor, then another and another"
Profile of a Long Covid patient who first got sick March 2020 and has been infected multiple times. Brief mention of ME/CFS.
Article here Thread here
Independent Sage Video of the April 22 session discussing Long Covid has been posted. The final question from the Q & A session focuses on ME/CFS (at about 59:25 timestamp).
Video here Thread here
USA A recording of the April 14 webinar from the Long Covid and Fatiguing Illness Recovery webinar series ("Autonomic/Cardiac Manifestations of Post-COVID Conditions") is now available.
Video here Thread here
Podcast Follow the Science - Cracking the Mystery of Long Covid w/Bruce Levy
Podcast here Thread here
..................
S4ME social media: Facebook, Twitter and YouTube
Last edited by a moderator:
Week beginning 25th April 2022
News, articles and advocacy
USA book published "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson, author of Ostler's Web.
'Scientific bias, doctors behaving badly, and misappropriation of federal ME research dollars all have played a role in the controversy. In The Why, I unravel deception by the Centers for Disease Control during the first 25 years of the ME epidemic that have fueled all the above.'
Thread with details here
David Tuller on Chronic Fatigue Syndrome and Myalgic Encephalomyelitis on Tub Talks With Damon
"Join us as we discuss his life, his causes, his commitment to advocating for medical information and dignity". A personal interview with David Tuller in a bath tub where he talks about his work on ME/CFS and the main issues of the field. He also talks about about his life, including experiences from the AIDS epidemic. Duration: 1h 14 min.
Interview here Thread here
Fundraising The crowdfunding appeals to support the work of Dr David Tuller and Dr Keith Geraghty that ran through April both reached their targets.
Thread here and here
Sweden
Paywalled article in a local newspaper about Madelene and how ME has destroyed her life for the last ten years.
Article here Thread here
An opinion piece on humility in a journal for doctors, inspired by a consultation with an ME sufferer.
Opinion piece here Thread here
An interview with Prof. Jonas Bergquist on Swedish TV where he talks about the possibility for a diagnostic test and treatments supporting the mitochondria.
Interview here Tweet with English summary here Thread here
Daily Sabah Fatigue due to long COVID-19 requires slowing down
Prof. Carmen Scheibenbogen offers advice on PEM and pacing.
Article here Thread here
................
ME/CFS Awareness events - May 2022
Worldwide events - see your local ME/CFS organisation to find out what is happening near you, or join in international online events.
Thread here
Open Medicine Foundation (OMF) has announced a new webcast series called "May Momentum Tuesdays." This video series will provide updates on the progress of the OMF Collaborative Research Network. Starting May 3rd, and continuing through the month, videos will be uploaded to YouTube, the OMF website, and social media every Tuesday.
Announcement here Thread here
European ME Alliance webinar
ME/CFS and post Covid in the Balkans - Friday 27 May 14:00 CET
Details here Thread here
Emerge Australia May awareness week webinar series with the Emerge CEO, Medical Director, Nurse Educator, Research Manager and others.
Topics include the basics of ME/CFS, Q&A, building your Post-Exertional Malaise (PEM) Toolkit, and research.
Details here Thread here
#MEAction has announced their plans for #MillionsMissing 2022. There will be two separate events. On May 12th (10 am PDT/1 pm EDT/6 pm BST) there will be a global, virtual (online) event. In September there are plans for a large in-person protest. You can RSVP for the May 12th online event now, and sign up to get updates about the September event.
Announcement here Thread here
USA - Solve M.E. "Advocacy Month Kickoff Event"
On Monday, May 2, from 10-11 AM PDT, disability advocate Jessica Kellgren-Fozard will give the keynote address to kickoff this year's Advocacy Month. Other events are scheduled throughout the month of May - see the Solve M.E. advocacy month calendar for details.
Announcement here Register here Thread here
...............
Research news
USA studies recruiting, New York.
The Icahn School of Medicine Pain and Fatigue Study Center is recruiting participants for 4 studies. Topics include balance problems, MRI comparison of ME/CFS and Long Covid, a sleep study comparing ME/CFS and fibromyalgia, and a PEM and blood volume study using cardiac stress tests.
Information here Thread here
..................
Research
Molecular and Cellular Neuroscience
"Elevated ATG13 in serum of pwME stimulates oxidative stress response in microglial cells via activation of receptor for advanced glycation end products" by Gottschalk et al
Differences were found between serum from a small sample of people with ME/CFS and controls. The abstract concludes: 'Collectively, our results suggest that an impairment of autophagy following the release of ATG13 into serum could be a pathological signal in ME/CFS'.
Paper here Thread here
JCI Insight Infectious Disease In press preview
"EBV/HHV-6A dUTPases contribute to ME/CFS pathophysiology by enhancing TFH cell differentiation and extrafollicular activities" by Cox et al.
Serum analysed from 351 ME/CFS patients and 77 controls 'indicate abnormal germinal center (GC) activity in ME/CFS subjects and highlight a mechanism by which EBV and HHV6-dUTPases may alter GC and extrafollicular Ab responses.'
Paper here Thread here
MedRxiv preprint not peer reviewed
"Revisiting IgG antibody reactivity to Epstein-Barr virus in ME/CFS and its potential application to disease diagnosis" by Sepúlveda et al
'... re-analysed a previously published microarray data on the IgG antibody responses against 3,054 EBV-related antigens in 92 patients with ME/CFS and 50 HCs.' No between group differences were found except for a subset 'with a putative infection at disease onset' who showed 'stronger antibody responses against two candidate antigens'. The authors suggest this has potential as a subgroup biomarker.
Paper here Thread here
Preprint not peer reviewed
"Cytokine Hub Classification of PASC, ME-CFS and other PASC-like Conditions" by Patterson et al
263 patients with Long covid, ME/CFS, post treatment Lyme disease or post vaccine symptoms tested with a 14-plex cytokine/chemokine panel. Computer analysis suggested the different conditions could be to some extent distinguished by which cytokines were raised, as shown on a tree diagram.
Paper here Thread here
Brain, Behavior, & Immunity Health
“Circadian rhythm disruption in ME/CFS: Implications for the post-acute sequelae of COVID-19” by M.J. McCarthy.
The author proposes that disrupted TGFB signaling in ME/CFS may play a role in disrupting physiological rhythms in sleep, activity, and cognition.
Article here Thread here
Diagnostics
“Separating Patients with SEID from Those with CFS in the French ME/CFS Association, with Some Thoughts on Nomenclature” Campagne et al.
The authors sent an anonymous questionnaire to members of the French Association of ME/CFS (ASFC). Among the 178/231 responding subjects who reported ME/CFS diagnosis, 150 (84%) met the criteria of SEID. However, this new SEID label was not well accepted by the study participants.
Article here Thread here
.................
Long COVID Research
Journal of the American Heart Association
"Ongoing Exercise Intolerance Following COVID‐19: A Magnetic Resonance–Augmented Cardiopulmonary Exercise Test Study" by Brown et al
Post hospitalised patients with and without ongoing exercise intolerance and healthy controls were compared. The abstract concludes: 'Magnetic resonance–augmented cardiopulmonary exercise testing suggests failure to augment stroke volume as a potential mechanism of exercise intolerance in previously hospitalized patients with COVID‐19. This is unrelated to disease severity and, reassuringly, improves with time from acute illness.'
Paper here Thread here
International Journal of Environmental Research and Public Health
“The Relationship between Physical Activity and Long COVID: A Cross-Sectional Study” by Wright et al.
This study concludes that Long COVID patients receive contradictory advice on whether to remain physically active and that more research is needed to understand how to safely return to normal physical activity without worsening Long COVID symptoms.
Article here Thread here
Journal of Medical Internet Research
“Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study” by Hannah L.S Day.
The authors conducted 11 interviews to explore the roles that online peer support groups take on, and the impact they have on patients recovering from long COVID in the United Kingdom
Article here Thread here
Journal of Clinical Medicine
Exercise Training in Post-COVID-19 Patients: The Need for a Multifactorial Protocol for a Multifactorial Pathophysiology” by Cattadori et al.
The Italian authors propose a post-COVID-19 patient exercise protocol and emphasize that exercise training is known to be highly valuable in patients with cardiac or lung disease.
Article here Thread here
.................
S4ME social media: Facebook, Twitter and YouTube
News, articles and advocacy
USA book published "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson, author of Ostler's Web.
'Scientific bias, doctors behaving badly, and misappropriation of federal ME research dollars all have played a role in the controversy. In The Why, I unravel deception by the Centers for Disease Control during the first 25 years of the ME epidemic that have fueled all the above.'
Thread with details here
David Tuller on Chronic Fatigue Syndrome and Myalgic Encephalomyelitis on Tub Talks With Damon
"Join us as we discuss his life, his causes, his commitment to advocating for medical information and dignity". A personal interview with David Tuller in a bath tub where he talks about his work on ME/CFS and the main issues of the field. He also talks about about his life, including experiences from the AIDS epidemic. Duration: 1h 14 min.
Interview here Thread here
Fundraising The crowdfunding appeals to support the work of Dr David Tuller and Dr Keith Geraghty that ran through April both reached their targets.
Thread here and here
Sweden
Paywalled article in a local newspaper about Madelene and how ME has destroyed her life for the last ten years.
Article here Thread here
An opinion piece on humility in a journal for doctors, inspired by a consultation with an ME sufferer.
Opinion piece here Thread here
An interview with Prof. Jonas Bergquist on Swedish TV where he talks about the possibility for a diagnostic test and treatments supporting the mitochondria.
Interview here Tweet with English summary here Thread here
Daily Sabah Fatigue due to long COVID-19 requires slowing down
Prof. Carmen Scheibenbogen offers advice on PEM and pacing.
Article here Thread here
................
ME/CFS Awareness events - May 2022
Worldwide events - see your local ME/CFS organisation to find out what is happening near you, or join in international online events.
Thread here
Open Medicine Foundation (OMF) has announced a new webcast series called "May Momentum Tuesdays." This video series will provide updates on the progress of the OMF Collaborative Research Network. Starting May 3rd, and continuing through the month, videos will be uploaded to YouTube, the OMF website, and social media every Tuesday.
Announcement here Thread here
European ME Alliance webinar
ME/CFS and post Covid in the Balkans - Friday 27 May 14:00 CET
Details here Thread here
Emerge Australia May awareness week webinar series with the Emerge CEO, Medical Director, Nurse Educator, Research Manager and others.
Topics include the basics of ME/CFS, Q&A, building your Post-Exertional Malaise (PEM) Toolkit, and research.
Details here Thread here
#MEAction has announced their plans for #MillionsMissing 2022. There will be two separate events. On May 12th (10 am PDT/1 pm EDT/6 pm BST) there will be a global, virtual (online) event. In September there are plans for a large in-person protest. You can RSVP for the May 12th online event now, and sign up to get updates about the September event.
Announcement here Thread here
USA - Solve M.E. "Advocacy Month Kickoff Event"
On Monday, May 2, from 10-11 AM PDT, disability advocate Jessica Kellgren-Fozard will give the keynote address to kickoff this year's Advocacy Month. Other events are scheduled throughout the month of May - see the Solve M.E. advocacy month calendar for details.
Announcement here Register here Thread here
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Research news
USA studies recruiting, New York.
The Icahn School of Medicine Pain and Fatigue Study Center is recruiting participants for 4 studies. Topics include balance problems, MRI comparison of ME/CFS and Long Covid, a sleep study comparing ME/CFS and fibromyalgia, and a PEM and blood volume study using cardiac stress tests.
Information here Thread here
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Research
Molecular and Cellular Neuroscience
"Elevated ATG13 in serum of pwME stimulates oxidative stress response in microglial cells via activation of receptor for advanced glycation end products" by Gottschalk et al
Differences were found between serum from a small sample of people with ME/CFS and controls. The abstract concludes: 'Collectively, our results suggest that an impairment of autophagy following the release of ATG13 into serum could be a pathological signal in ME/CFS'.
Paper here Thread here
JCI Insight Infectious Disease In press preview
"EBV/HHV-6A dUTPases contribute to ME/CFS pathophysiology by enhancing TFH cell differentiation and extrafollicular activities" by Cox et al.
Serum analysed from 351 ME/CFS patients and 77 controls 'indicate abnormal germinal center (GC) activity in ME/CFS subjects and highlight a mechanism by which EBV and HHV6-dUTPases may alter GC and extrafollicular Ab responses.'
Paper here Thread here
MedRxiv preprint not peer reviewed
"Revisiting IgG antibody reactivity to Epstein-Barr virus in ME/CFS and its potential application to disease diagnosis" by Sepúlveda et al
'... re-analysed a previously published microarray data on the IgG antibody responses against 3,054 EBV-related antigens in 92 patients with ME/CFS and 50 HCs.' No between group differences were found except for a subset 'with a putative infection at disease onset' who showed 'stronger antibody responses against two candidate antigens'. The authors suggest this has potential as a subgroup biomarker.
Paper here Thread here
Preprint not peer reviewed
"Cytokine Hub Classification of PASC, ME-CFS and other PASC-like Conditions" by Patterson et al
263 patients with Long covid, ME/CFS, post treatment Lyme disease or post vaccine symptoms tested with a 14-plex cytokine/chemokine panel. Computer analysis suggested the different conditions could be to some extent distinguished by which cytokines were raised, as shown on a tree diagram.
Paper here Thread here
Brain, Behavior, & Immunity Health
“Circadian rhythm disruption in ME/CFS: Implications for the post-acute sequelae of COVID-19” by M.J. McCarthy.
The author proposes that disrupted TGFB signaling in ME/CFS may play a role in disrupting physiological rhythms in sleep, activity, and cognition.
Article here Thread here
Diagnostics
“Separating Patients with SEID from Those with CFS in the French ME/CFS Association, with Some Thoughts on Nomenclature” Campagne et al.
The authors sent an anonymous questionnaire to members of the French Association of ME/CFS (ASFC). Among the 178/231 responding subjects who reported ME/CFS diagnosis, 150 (84%) met the criteria of SEID. However, this new SEID label was not well accepted by the study participants.
Article here Thread here
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Long COVID Research
Journal of the American Heart Association
"Ongoing Exercise Intolerance Following COVID‐19: A Magnetic Resonance–Augmented Cardiopulmonary Exercise Test Study" by Brown et al
Post hospitalised patients with and without ongoing exercise intolerance and healthy controls were compared. The abstract concludes: 'Magnetic resonance–augmented cardiopulmonary exercise testing suggests failure to augment stroke volume as a potential mechanism of exercise intolerance in previously hospitalized patients with COVID‐19. This is unrelated to disease severity and, reassuringly, improves with time from acute illness.'
Paper here Thread here
International Journal of Environmental Research and Public Health
“The Relationship between Physical Activity and Long COVID: A Cross-Sectional Study” by Wright et al.
This study concludes that Long COVID patients receive contradictory advice on whether to remain physically active and that more research is needed to understand how to safely return to normal physical activity without worsening Long COVID symptoms.
Article here Thread here
Journal of Medical Internet Research
“Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study” by Hannah L.S Day.
The authors conducted 11 interviews to explore the roles that online peer support groups take on, and the impact they have on patients recovering from long COVID in the United Kingdom
Article here Thread here
Journal of Clinical Medicine
Exercise Training in Post-COVID-19 Patients: The Need for a Multifactorial Protocol for a Multifactorial Pathophysiology” by Cattadori et al.
The Italian authors propose a post-COVID-19 patient exercise protocol and emphasize that exercise training is known to be highly valuable in patients with cardiac or lung disease.
Article here Thread here
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