News in Brief - August 2025
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Week beginning 4th August 2025
Part 1 of 2
DecodeME results announced
Research Preprint
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
"DecodeME has provided the first robust evidence that genetic variation contributes to the risk of developing ME/CFS, which should help to reduce the stigma of the illness."
Preprint | Thread
DecodeME website
Initial DecodeME DNA Results
A brief article that summarises the main findings, including: "Eight genetic signals have been identified... The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease...These signals align with how people with ME/CFS describe their illness... Another likely gene is related to chronic pain. None are related to depression or anxiety."
X marks the spot where ME/CFS biology can be discovered
A clear article written for non scientists that explains what the research did and what it found. "each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure. The next step is to find that treasure – the specific genes that are causing ME/CFS."
Article | Thread
FAQ page answers some frequently asked questions, including "How definite are these results?"
....................
Organisations
Action for ME DecodeME initial DNA results announced
A brief article summarises the findings and quotes from the 3 leaders of the study. Some excerpts:
Andy Devereux-Cooke: "DecodeME also shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.”
Sonya Chowdhury: “These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets. This brings ME/CFS in line with other long-term diseases which have genetic components."
Chris Ponting: “This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people’s ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research. With our participants we have built an extraordinarily rich DecodeME data set, to which we continue to offer data access."
ME Association Decode ME release initial DNA results!
A brief statement from Dr Shepherd on some of the key findings and implications, with a longer response to follow.
ME Research UK article quotes from some of the DecodeME materials and media coverage, looks at what next and links some of the media.
BACME, the clinicians organisation has sent a brief statement to the MEA welcoming the DecodeME findings and supporting continuing biomedical research.
..................
Media
Press release University of Edinburgh
Key genetic differences found in people with ME/CFS
"Scientists have discovered that people diagnosed with ME/CFS have significant differences in their DNA, offering the first robust evidence that genes contribute to a person’s chance of developing the disease."
Outlines the findings clearly and the implications. Includes quotes from the three project leaders, Chris Ponting, Andy Devereux-Cooke and Sonya Chowdhury.
Press release
Science media
New Scientist Key genetic differences found in people with chronic fatigue syndrome
Good article (paywalled)
Science Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
Accompanied by a photo of an empty shoes Millions Missing protest, Science provides a thorough article outlining the research, its findings, quotes from the press conference and the next steps.
"Action for ME and the University of Edinburgh are spearheading another project, PRIME, set to launch in October with nearly £850,000 of U.K. government funding. That work aims to generate new research collaborations into the genetics and disease mechanisms of ME/CFS, as well as improve patient and public involvement in research."
Live Science Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome
A large study of ME/CFS included more than 15,000 people and identified eight locations in the genome linked to the disease.
IFL Science 8 Key DNA Regions More Likely To Be Altered In People With ME/CFS, Finds 27,000-Strong Study
"The genetic signals are associated with the immune system and nervous system, matching symptoms patients report."
Science Media Centre expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS
Dr Jackie Cliff "By providing solid biological evidence of disease-susceptibility, this study should stimulate vigorous research in the ME/CFS area."
Prof Alan Carson makes an unhelpful comment that misreports the diagnostic basis of participants in the study.
Dr Alena Pance "This is a great advance towards understanding the illness better and most importantly towards developing diagnostic tools to facilitate appropriate healthcare."
Dr Amy Mason "Interestingly they find no evidence that depression and ME/CFS have shared genetic links, but do find evidence of both pain and the immune system being involved. This fits with what patients often report and helps shift the narrative; ME/CFS is not psychosomatic but linked to measurable differences in genes affecting pain and immunity."
General media
Channel 4 News Nine minute segment on publication day, 6th August
Quote from Broken Battery who provide the YouTube copy:
"The segment includes interviews with study lead Prof Chris Ponting, a patient participant, and Sonia Chowdhury from Action for ME. It also revisits the case of Maeve Boothby O’Neill, who died of malnutrition due to severe ME, highlighting the urgent need for better NHS care. MP Tessa Munt calls for increased government funding and recognition of MECFS as a serious, medically proven illness."
BBC Scotland TV News at 7 Six minute recording and notes by Broken Battery
"The report features patient Amanda Stevenson, who shares how the illness has shaped her life and the lack of treatment options in Scotland. Prof Chris Ponting explains how this breakthrough could finally shift stigma and drive further research."
BBC Radio 4 Today program: 6 minutes recorded and described by Broken Battery
"Professor Chris Ponting explains how researchers identified eight regions in human DNA linked to increased risk of developing ME/CFS, marking a turning point in scientific understanding.The segment also includes 19-year-old Lucy, who describes how difficult it was to be taken seriously when she first became ill at age 11."
BBC 5 Live Nicky Campbell phone-in. Edited recording (53 mins) by Broken Battery. Professor Chris Ponting explains the findings, and callers share how stigma, misdiagnosis, and severe illness have shaped their lives with ME/CFS.
Australia ABC radio Nightlife 22 minutes
"We ask experts in the field Dr Richard Schloeffel, long-time researcher of biomarkers in patients with ME/CFS and Anne Wilson, CEO of national patient support organisation Emerge Australia: Is this latest discovery likely to change how ME/CFS is viewed, treated and understood?"
LBC phone-in show hosted by Natasha Devon 38 minutes
Callers shared their experiences of living with ME/CFS, medical gaslighting, stigma, and the impact of the study’s findings.
The Times Breakthrough genetic study offers treatment hope for ME patients
Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’
"Ponting said the study would enable medical researchers to have a “laser-like” focus on where to target treatments or repurpose existing drugs at a “breakneck speed”. He added: “I’m actually quite angry that this [genetic analysis] was not done 15 years ago, just like for every other major disease.”"
The Times Lack of ME research because of ‘medical misogyny’, says top scientist
"Ponting said there would be no UK follow-up to his work, adding: “That is because this disease is highly stigmatised and incredibly female-biased. That is a tragedy for so many people that scientists and clinicians are not focusing properly on this awful and highly prevalent disease."
The Guardian Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
Huff Post I Was Medically Gaslit For Years – This Study Finally Proves ME/CFS Is A Real Illness
Dayna McAlpine describes her experiences of being disbelieved, and welcomes the study: "Finally we have solid evidence that what 67 million of us (!!!) have been experiencing... is real."
Newsweek Study finds genetics could cause this chronic condition
Includes quotes from Chris Ponting, Julia Newton, Anthony Komaroff, and unhelpful comments from Simon Wessely based on his beliefs.
New York Post Debilitating illness once dismissed as ‘yuppie flu’ actually has genetic causes: study
Quotes from the press release, and adds that ME/CFS affects 3.3 million Americans. "Currently, there is no diagnostic test, effective treatment, or cure for ME/CFS, according to the Centers for Disease Control and Prevention.
The Telegraph ME is a real illness, genetic study shows
Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome
The Independent The key genetic difference ME sufferers have from others – and what it means
Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease
Financial Times Chronic fatigue patients have different genes, study finds
Belgium Nieuwsblad Scientific study shows link between genes and chronic fatigue syndrome
"The Belgian patient association 12ME is also pleased with the DecodeME results. "This study is truly a milestone in ME/CFS research," says Michiel Tack, vice-president of the association, in a press release."
Hungary Portfolio business website article based on the Financial Times article, emphases stigma and neglect of ME/CFS. Google translation
Reuters Repeat Carson's SMC misdescription of inclusion criteria.
Eastern Daily Times | Daily Mail | The Standard | Canada CTV news | The Straits Times
....................
David Tuller
Trial by Error: DecodeME Pre-Print Reports Eight "Genetic Signals" Related to Immune Function and Nervous System
About the DecodeME preprint and also on Science Media Centre's coverage of the study which this time also included non biased comments from experts outside the biopsychosocial brigade.
Article
David Tuller interviews Chris Ponting - video 28 minutes
An excellent interview with the DecodeME lead researcher covering the research process, the findings so far, and the implications for people with ME/CFS. Ponting explained why they have released the results first as a preprint: "we always said that it wouldn't be peer reviewers who would read the results first. it would be people with ME including the participants of DecodeME".
Video | Thread
..................
Coming event
Webinar DecodeME Initial Results Webinar, Aug 14, 2025 03:30 PM BST
Register for Zoom access (limited spaces available) here, this will also be live streamed on Facebook, and will be uploaded to YouTube afterwards.
Thread
....................
Fundraising
Action for ME
"Help us build on the work of DecodeME by supporting future research into ME/CFS.
Donations will be managed by Action for ME, and used towards research projects delivered in partnership with the University of Edinburgh, such as the Genetics Centre of Excellence and Sequence ME and Long Covid."
Donation page | Thread
University of Edinburgh ME/CFS research team
Our work, including the DecodeME project - the largest study of ME/CFS in the world - aims to find genetic causes of why people become ill with ME/CFS, better understand the disease and ultimately find treatments.
Donation page | Thread
____________________
Go to the next post for the rest of this week's news and research
Part 1 of 2
DecodeME results announced
Research Preprint
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
"DecodeME has provided the first robust evidence that genetic variation contributes to the risk of developing ME/CFS, which should help to reduce the stigma of the illness."
Preprint | Thread
DecodeME website
Initial DecodeME DNA Results
A brief article that summarises the main findings, including: "Eight genetic signals have been identified... The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease...These signals align with how people with ME/CFS describe their illness... Another likely gene is related to chronic pain. None are related to depression or anxiety."
X marks the spot where ME/CFS biology can be discovered
A clear article written for non scientists that explains what the research did and what it found. "each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure. The next step is to find that treasure – the specific genes that are causing ME/CFS."
Article | Thread
FAQ page answers some frequently asked questions, including "How definite are these results?"
....................
Organisations
Action for ME DecodeME initial DNA results announced
A brief article summarises the findings and quotes from the 3 leaders of the study. Some excerpts:
Andy Devereux-Cooke: "DecodeME also shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.”
Sonya Chowdhury: “These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets. This brings ME/CFS in line with other long-term diseases which have genetic components."
Chris Ponting: “This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people’s ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research. With our participants we have built an extraordinarily rich DecodeME data set, to which we continue to offer data access."
ME Association Decode ME release initial DNA results!
A brief statement from Dr Shepherd on some of the key findings and implications, with a longer response to follow.
ME Research UK article quotes from some of the DecodeME materials and media coverage, looks at what next and links some of the media.
BACME, the clinicians organisation has sent a brief statement to the MEA welcoming the DecodeME findings and supporting continuing biomedical research.
..................
Media
Press release University of Edinburgh
Key genetic differences found in people with ME/CFS
"Scientists have discovered that people diagnosed with ME/CFS have significant differences in their DNA, offering the first robust evidence that genes contribute to a person’s chance of developing the disease."
Outlines the findings clearly and the implications. Includes quotes from the three project leaders, Chris Ponting, Andy Devereux-Cooke and Sonya Chowdhury.
Press release
Science media
New Scientist Key genetic differences found in people with chronic fatigue syndrome
Good article (paywalled)
Science Possible genetic clues to ME/chronic fatigue syndrome identified in massive study
DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”
Accompanied by a photo of an empty shoes Millions Missing protest, Science provides a thorough article outlining the research, its findings, quotes from the press conference and the next steps.
"Action for ME and the University of Edinburgh are spearheading another project, PRIME, set to launch in October with nearly £850,000 of U.K. government funding. That work aims to generate new research collaborations into the genetics and disease mechanisms of ME/CFS, as well as improve patient and public involvement in research."
Live Science Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome
A large study of ME/CFS included more than 15,000 people and identified eight locations in the genome linked to the disease.
IFL Science 8 Key DNA Regions More Likely To Be Altered In People With ME/CFS, Finds 27,000-Strong Study
"The genetic signals are associated with the immune system and nervous system, matching symptoms patients report."
Science Media Centre expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS
Dr Jackie Cliff "By providing solid biological evidence of disease-susceptibility, this study should stimulate vigorous research in the ME/CFS area."
Prof Alan Carson makes an unhelpful comment that misreports the diagnostic basis of participants in the study.
Dr Alena Pance "This is a great advance towards understanding the illness better and most importantly towards developing diagnostic tools to facilitate appropriate healthcare."
Dr Amy Mason "Interestingly they find no evidence that depression and ME/CFS have shared genetic links, but do find evidence of both pain and the immune system being involved. This fits with what patients often report and helps shift the narrative; ME/CFS is not psychosomatic but linked to measurable differences in genes affecting pain and immunity."
General media
Channel 4 News Nine minute segment on publication day, 6th August
Quote from Broken Battery who provide the YouTube copy:
"The segment includes interviews with study lead Prof Chris Ponting, a patient participant, and Sonia Chowdhury from Action for ME. It also revisits the case of Maeve Boothby O’Neill, who died of malnutrition due to severe ME, highlighting the urgent need for better NHS care. MP Tessa Munt calls for increased government funding and recognition of MECFS as a serious, medically proven illness."
BBC Scotland TV News at 7 Six minute recording and notes by Broken Battery
"The report features patient Amanda Stevenson, who shares how the illness has shaped her life and the lack of treatment options in Scotland. Prof Chris Ponting explains how this breakthrough could finally shift stigma and drive further research."
BBC Radio 4 Today program: 6 minutes recorded and described by Broken Battery
"Professor Chris Ponting explains how researchers identified eight regions in human DNA linked to increased risk of developing ME/CFS, marking a turning point in scientific understanding.The segment also includes 19-year-old Lucy, who describes how difficult it was to be taken seriously when she first became ill at age 11."
BBC 5 Live Nicky Campbell phone-in. Edited recording (53 mins) by Broken Battery. Professor Chris Ponting explains the findings, and callers share how stigma, misdiagnosis, and severe illness have shaped their lives with ME/CFS.
Australia ABC radio Nightlife 22 minutes
"We ask experts in the field Dr Richard Schloeffel, long-time researcher of biomarkers in patients with ME/CFS and Anne Wilson, CEO of national patient support organisation Emerge Australia: Is this latest discovery likely to change how ME/CFS is viewed, treated and understood?"
LBC phone-in show hosted by Natasha Devon 38 minutes
Callers shared their experiences of living with ME/CFS, medical gaslighting, stigma, and the impact of the study’s findings.
The Times Breakthrough genetic study offers treatment hope for ME patients
Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’
"Ponting said the study would enable medical researchers to have a “laser-like” focus on where to target treatments or repurpose existing drugs at a “breakneck speed”. He added: “I’m actually quite angry that this [genetic analysis] was not done 15 years ago, just like for every other major disease.”"
The Times Lack of ME research because of ‘medical misogyny’, says top scientist
"Ponting said there would be no UK follow-up to his work, adding: “That is because this disease is highly stigmatised and incredibly female-biased. That is a tragedy for so many people that scientists and clinicians are not focusing properly on this awful and highly prevalent disease."
The Guardian Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
Huff Post I Was Medically Gaslit For Years – This Study Finally Proves ME/CFS Is A Real Illness
Dayna McAlpine describes her experiences of being disbelieved, and welcomes the study: "Finally we have solid evidence that what 67 million of us (!!!) have been experiencing... is real."
Newsweek Study finds genetics could cause this chronic condition
Includes quotes from Chris Ponting, Julia Newton, Anthony Komaroff, and unhelpful comments from Simon Wessely based on his beliefs.
New York Post Debilitating illness once dismissed as ‘yuppie flu’ actually has genetic causes: study
Quotes from the press release, and adds that ME/CFS affects 3.3 million Americans. "Currently, there is no diagnostic test, effective treatment, or cure for ME/CFS, according to the Centers for Disease Control and Prevention.
The Telegraph ME is a real illness, genetic study shows
Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome
The Independent The key genetic difference ME sufferers have from others – and what it means
Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease
Financial Times Chronic fatigue patients have different genes, study finds
Belgium Nieuwsblad Scientific study shows link between genes and chronic fatigue syndrome
"The Belgian patient association 12ME is also pleased with the DecodeME results. "This study is truly a milestone in ME/CFS research," says Michiel Tack, vice-president of the association, in a press release."
Hungary Portfolio business website article based on the Financial Times article, emphases stigma and neglect of ME/CFS. Google translation
Reuters Repeat Carson's SMC misdescription of inclusion criteria.
Eastern Daily Times | Daily Mail | The Standard | Canada CTV news | The Straits Times
....................
David Tuller
Trial by Error: DecodeME Pre-Print Reports Eight "Genetic Signals" Related to Immune Function and Nervous System
About the DecodeME preprint and also on Science Media Centre's coverage of the study which this time also included non biased comments from experts outside the biopsychosocial brigade.
Article
David Tuller interviews Chris Ponting - video 28 minutes
An excellent interview with the DecodeME lead researcher covering the research process, the findings so far, and the implications for people with ME/CFS. Ponting explained why they have released the results first as a preprint: "we always said that it wouldn't be peer reviewers who would read the results first. it would be people with ME including the participants of DecodeME".
Video | Thread
..................
Coming event
Webinar DecodeME Initial Results Webinar, Aug 14, 2025 03:30 PM BST
Register for Zoom access (limited spaces available) here, this will also be live streamed on Facebook, and will be uploaded to YouTube afterwards.
Thread
....................
Fundraising
Action for ME
"Help us build on the work of DecodeME by supporting future research into ME/CFS.
Donations will be managed by Action for ME, and used towards research projects delivered in partnership with the University of Edinburgh, such as the Genetics Centre of Excellence and Sequence ME and Long Covid."
Donation page | Thread
University of Edinburgh ME/CFS research team
Our work, including the DecodeME project - the largest study of ME/CFS in the world - aims to find genetic causes of why people become ill with ME/CFS, better understand the disease and ultimately find treatments.
Donation page | Thread
____________________
Go to the next post for the rest of this week's news and research
Last edited by a moderator:
Week beginning 4th August 2025
Part 2 of 2
Other news, advocacy and articles
Severe ME Day 2025
August 8th is the awareness day for Severe ME. This is a day to raise awareness for severe ME and to remember those who suffer from and have died from severe ME. Heartfelt and warm thoughts to patients, carers and everyone working to improve the horrid situation for this patient group.
Thread
World ME Alliance published a new guide titled "Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians". The guide has been created in partnership with the Severe ME Advocacy Group.
"This resource from the World ME Alliance, available in both English and French, is intended for use in crisis situations — particularly when hospitalisation is being considered — and can be handed to clinicians and healthcare providers by patients or carers. It is designed to support self-advocacy when people with Severe ME may be too unwell to speak for themselves, and to guide healthcare professionals toward safer, more appropriate care."
Guide l Thread
#MEAction Severe ME Artists Project, 2025
The art submitted by severe ME patients (videos, writing, and other art pieces) has been posted on the #MEAction website. This page includes a video compilation that shows a selection of the artwork.
Website | Thread
Kara Jane Spencer From an ME Association article: "‘In Limbo' is the name of the new album released today – Severe ME Day – by the family of Kara Jane Spencer. The new album celebrates the life of the singer-songwriter who died of ME in January 2023, when she was just 32 years old." Proceeds to ME research.
Article | Website | Thread
Anil about ME Health(s)care *** Severe ME Day 2025 - video 4 minutes
"A short talk for the 8th of August about how healthcare can be a frightening place for those of us living with severe ME. We urgently need things to change. We need support, and you can help." "I'm now housebound and mostly bedbound, I have not seen any treating physician in 12 years. For me that is incomprehensible."
Video | Thread
.................
UK Scotland Formal Resignation from the Long Covid Strategic Network
"Ministers and colleagues, It is with regret that Long Covid Scotland and Long Covid Kids must formally tender our resignation from the Strategic Long Covid Network, due to critical failures in communication, coordination and delivery."
Article | Thread
The Sunday Times As my daughter died of ME, the state met in secret to blame me
"Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27... Sarah Boothby had no idea that at the same time as she begged for help for her daughter, the people she was turning to were holding secret safeguarding meetings, discussing the possibility that Maeve’s condition was in fact caused or fabricated by her — and proposing Maeve’s forcible removal from her care."
Article | Thread
David Tuller
Interview with Oonagh Cousins of #ThereForME about the UK government's ME delivery plan
Conversation with a disappointed advocate Oonagh Cousins about the recent national delivery plan for ME/CFS in UK.
YouTube l Thread
Salzburg
After a round table organized by patient organisations in October 2024, the Salzburg state parliament decided at the request of Kimbie Humer-Vogl to appoint an ME/CFS contact point. However, instead of professional treatment by ME/CFS specialists, the contact point will focus on coordinating patients.
Article | Thread
WE&ME
The WE&ME Foundation is providing a further €450,000 for ME/CFS research. The funding was made available via the alpha+ Foundation of the Austrian Science Fund (FWF) and ranks among the highest privately funded research awards in Austria.
Article | Thread
.............
Research
ME/CFS research
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome — DecodeME Collaboration
"DecodeME's results, grounded in the principles of statistical genetics, now place ME/CFS research on a firm biological foundation: they begin to explain the disease’s heritable component, they improve the likelihood of finding effective drugs for ME/CFS, and they place this long-neglected disease on more equal terms with other common genetic conditions."
Preprint | Thread
Circulating FGF-21 as a Disease-Modifying Factor Associated with Distinct Symptoms and Cognitive Profiles in Myalgic Encephalomyelitis and Fibromyalgia — Azimi et al.
"only in the ME group did higher plasma FGF-21 levels correlate positively with cognitive outcomes, including overall cognitive scores and immediate memory recognition. This specific association suggests that in ME, FGF-21 may exert a beneficial effect on brain function"
Article | Thread
Long Covid research
Sociodemographic factors, biomarkers and comorbidities associated with post-acute COVID-19 sequelae in UK Biobank — Alcalde-Herraiz et al.
"results suggest an association between inflammation, cardiovascular, and liver function markers and the risk of LC. Conversely, higher levels of [insulin-like growth factor 1] and [sex hormone binding globulin] were associated with a decreased risk of LC"
Article | Thread
Pain among US adults before, during, and after the COVID-19 pandemic: a study using the 2019 to 2023 National Health Interview Survey — Zajacova et al.
"Pain surged dramatically among US adults after the COVID-19 pandemic. Between 2019 and 2023, prevalence of chronic pain and high-impact chronic pain increased by 18% and 13%, respectively." "This increase represents more than 10 million additional individuals experiencing chronic pain in 2023 compared with just 5 years prior"
Article | Thread
Association of COVID vaccinations and treatments with long COVID beyond 6 months: a case-control study on the adult population in a large integrated healthcare system in the United States from 2020 to 2023 — Liu et al.
"vaccination, remdesivir, and nirmatrelvir/ritonavir show significant associations with decreased Long COVID outcomes at 6 months and beyond"
Article | Thread
Financial burden of patients with post-acute COVID-19 syndrome — Scheel-Barteit et al.
"PCS patients in Germany suffer from a high financial double burden of loss of income and additional costs due to [out-of-pocket payments] diagnostics and therapies."
Article | Thread
Design and validation of an energy level diary for fatigue management in patients with post-COVID syndrome — Balke et al.
"During a mean of 29.9 ± 5.7 days, patients participated in ∼23 therapies per week including ∼11 active and ∼3 passive therapies. Energy levels decreased on average by ∼2% with each cognitive therapy session (total of 488 sessions, p = 0.0057) and by ∼5% with active therapy sessions (1,926 sessions)"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Part 2 of 2
Other news, advocacy and articles
Severe ME Day 2025
August 8th is the awareness day for Severe ME. This is a day to raise awareness for severe ME and to remember those who suffer from and have died from severe ME. Heartfelt and warm thoughts to patients, carers and everyone working to improve the horrid situation for this patient group.
Thread
World ME Alliance published a new guide titled "Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians". The guide has been created in partnership with the Severe ME Advocacy Group.
"This resource from the World ME Alliance, available in both English and French, is intended for use in crisis situations — particularly when hospitalisation is being considered — and can be handed to clinicians and healthcare providers by patients or carers. It is designed to support self-advocacy when people with Severe ME may be too unwell to speak for themselves, and to guide healthcare professionals toward safer, more appropriate care."
Guide l Thread
#MEAction Severe ME Artists Project, 2025
The art submitted by severe ME patients (videos, writing, and other art pieces) has been posted on the #MEAction website. This page includes a video compilation that shows a selection of the artwork.
Website | Thread
Kara Jane Spencer From an ME Association article: "‘In Limbo' is the name of the new album released today – Severe ME Day – by the family of Kara Jane Spencer. The new album celebrates the life of the singer-songwriter who died of ME in January 2023, when she was just 32 years old." Proceeds to ME research.
Article | Website | Thread
Anil about ME Health(s)care *** Severe ME Day 2025 - video 4 minutes
"A short talk for the 8th of August about how healthcare can be a frightening place for those of us living with severe ME. We urgently need things to change. We need support, and you can help." "I'm now housebound and mostly bedbound, I have not seen any treating physician in 12 years. For me that is incomprehensible."
Video | Thread
.................
UK Scotland Formal Resignation from the Long Covid Strategic Network
"Ministers and colleagues, It is with regret that Long Covid Scotland and Long Covid Kids must formally tender our resignation from the Strategic Long Covid Network, due to critical failures in communication, coordination and delivery."
Article | Thread
The Sunday Times As my daughter died of ME, the state met in secret to blame me
"Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27... Sarah Boothby had no idea that at the same time as she begged for help for her daughter, the people she was turning to were holding secret safeguarding meetings, discussing the possibility that Maeve’s condition was in fact caused or fabricated by her — and proposing Maeve’s forcible removal from her care."
Article | Thread
David Tuller
Interview with Oonagh Cousins of #ThereForME about the UK government's ME delivery plan
Conversation with a disappointed advocate Oonagh Cousins about the recent national delivery plan for ME/CFS in UK.
YouTube l Thread
Salzburg
After a round table organized by patient organisations in October 2024, the Salzburg state parliament decided at the request of Kimbie Humer-Vogl to appoint an ME/CFS contact point. However, instead of professional treatment by ME/CFS specialists, the contact point will focus on coordinating patients.
Article | Thread
WE&ME
The WE&ME Foundation is providing a further €450,000 for ME/CFS research. The funding was made available via the alpha+ Foundation of the Austrian Science Fund (FWF) and ranks among the highest privately funded research awards in Austria.
Article | Thread
.............
Research
ME/CFS research
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome — DecodeME Collaboration
"DecodeME's results, grounded in the principles of statistical genetics, now place ME/CFS research on a firm biological foundation: they begin to explain the disease’s heritable component, they improve the likelihood of finding effective drugs for ME/CFS, and they place this long-neglected disease on more equal terms with other common genetic conditions."
Preprint | Thread
Circulating FGF-21 as a Disease-Modifying Factor Associated with Distinct Symptoms and Cognitive Profiles in Myalgic Encephalomyelitis and Fibromyalgia — Azimi et al.
"only in the ME group did higher plasma FGF-21 levels correlate positively with cognitive outcomes, including overall cognitive scores and immediate memory recognition. This specific association suggests that in ME, FGF-21 may exert a beneficial effect on brain function"
Article | Thread
Long Covid research
Sociodemographic factors, biomarkers and comorbidities associated with post-acute COVID-19 sequelae in UK Biobank — Alcalde-Herraiz et al.
"results suggest an association between inflammation, cardiovascular, and liver function markers and the risk of LC. Conversely, higher levels of [insulin-like growth factor 1] and [sex hormone binding globulin] were associated with a decreased risk of LC"
Article | Thread
Pain among US adults before, during, and after the COVID-19 pandemic: a study using the 2019 to 2023 National Health Interview Survey — Zajacova et al.
"Pain surged dramatically among US adults after the COVID-19 pandemic. Between 2019 and 2023, prevalence of chronic pain and high-impact chronic pain increased by 18% and 13%, respectively." "This increase represents more than 10 million additional individuals experiencing chronic pain in 2023 compared with just 5 years prior"
Article | Thread
Association of COVID vaccinations and treatments with long COVID beyond 6 months: a case-control study on the adult population in a large integrated healthcare system in the United States from 2020 to 2023 — Liu et al.
"vaccination, remdesivir, and nirmatrelvir/ritonavir show significant associations with decreased Long COVID outcomes at 6 months and beyond"
Article | Thread
Financial burden of patients with post-acute COVID-19 syndrome — Scheel-Barteit et al.
"PCS patients in Germany suffer from a high financial double burden of loss of income and additional costs due to [out-of-pocket payments] diagnostics and therapies."
Article | Thread
Design and validation of an energy level diary for fatigue management in patients with post-COVID syndrome — Balke et al.
"During a mean of 29.9 ± 5.7 days, patients participated in ∼23 therapies per week including ∼11 active and ∼3 passive therapies. Energy levels decreased on average by ∼2% with each cognitive therapy session (total of 488 sessions, p = 0.0057) and by ∼5% with active therapy sessions (1,926 sessions)"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Last edited by a moderator:
Week beginning 11th August 2025
News, advocacy and articles
Denmark A journal on health and politics, Sundhedspolitisk Tidsskrift, writes about a protest letter to the Danish Health Authority signed by 849 ME patients and carers. The letter criticises the Danish Health Authority for having invited the Patient Association for Functional Disorders as patients representatives in the work on developing new guidelines for ME/CFS. This may lead the work on a different path than of its original mandate and of international research.
Article l Thread
Austria
The Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna have published a new document with care advice for patients with (very) severe ME/CFS. The guide is in German and mostly based on the experiences of carers. It gives advice about practical things such as portable toilets, three-sided toothbrushes, customized earplugs, dimmable LED lights, etc.
Article | Thread
UK BACME The clinicians' organisation is running a survey on enteral feeding for people with very severe ME/CFS that is not open to the wider ME/CFS community, and a conference for clinicians on severe and very severe ME/CFS. Forum members are concerned about the content of both.
Thread
Germany
Der Spiegel has published an interview with psychotherapist Bettina Grande about the suffering, stigma, and neglect faced by those living with ME/CFS.
Article | Thread
BJGP (The British Journal of General Practice) "What does the fallout from the 'Salt Path' saga tell us about our society's idea about chronic illness and exercise?"
Thoughtful article by GP and Long Covid sufferer Elke Hausmann on how stories of "hope", and that exercise can only be healing are problematic, especially when it comes to illnesses such as ME/CFS. "It goes so against our societal bias that exercise is always good for you, that most people will uncritically believe the claims of those doctors who still propose ‘graded exercise therapy’ (GET) as a treatment for Long Covid or ME, long after this has been discredited over the voices of patients who are testifying in their many thousands that this is NOT good for us, and can even make us worse."
Article l Thread
.............
DecodeME
More media coverage of the DecodeME genome-wide association study of ME/CFS which was published as a preprint last week.
Thread
RNZ New Zealand radio programme Saturday Morning has a ten minute segment titled "Decoding ME/CFS" interviewing professor Chris Ponting from the DecodeME study.
newry.ie "Hope 4 ME & Fibro NI Welcome New Study Showing Genetic Proof of Biological Cause for M.E."
Irish news article. Joan McParland: "We urge the Department of Health and our elected representatives to respond to this evidence and finally deliver the services people with M.E. desperately need". Professor Tom Trinnick: "This will shape future research and focus treatment for this disabling chronic condition. These patients are very poorly served at present, often struggling with minimal or no support. This needs to change".
semafor Short news article titled "Study finds genetic clues to a chronically overlooked and debilitating condition"
The Dallas Express "Chronic Fatigue Syndrome? Blame Your Genes, Not Your Mind"
Smithsonian magazine "Scientists Find Links to Chronic Fatigue Syndrome in Genes and in the Gut Microbiome"
Today's Nature Briefing newsletter linked to Science's article last week about DecodeME
Deutsches Ärztheblatt A German news site for medical doctors with article titled: "ME/CFS: Evidence of genetic predisposition found" (paywalled)
science&vie Article in French science magazine titled "Do you suffer from chronic fatigue? It could be in your DNA, according to these researchers from the University of Edinburgh"
DerStandard Dutch news article titled "Chronic fatigue - Possible Genetic Background of ME/CFS Identified"
trouw Dutch news article titled "In ME/CFS patients, something in the body can now be identified that is linked to the disease" (paywalled)
La Repubblica Italian news article titled "Chronic Fatigue Syndrome: Possible Genetic Clues Discovered"
drportal.hu A Hungarian news site for health care workers with article titled "Understanding instead of stigmatization: a new chapter opens in chronic fatigue syndrome research"
Aftonbladet Swedish news article titled "New study can reveal who gets ME"
..................
Research news
Solve ME - PLRF Event Highlights Promising ME/CFS & Long Covid Biomedical Research Projects
A report on the findings presented on July 9 by researchers funded by the PLRF (Patient-led Research Fund).
Article | Thread
Solve M.E. and The Brain Inflammation Collaborative Launch the Unified Platform to Advance Research Across 30+ Chronic Conditions
The unhide® Solve Together Unified Platform is a digital health tool designed to uncover hidden connections between inflammation, chronic illness, and overall health.
Article | Thread
.................
Coming events
Stanford Genome Technology Center is hosting a virtual Community Symposium
Friday, Sept. 5, 8 AM - 1 PM Pacific Time
Speakers will present "findings on ME/CFS, what they believe is the cause of the disease, and how they are working towards a solution."
Registration | Thread
.............
Research
ME/CFS research
Circulating cell-free RNA signatures for the characterization and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome — Gardella et al.
"Immune cfRNA deconvolution revealed differences in platelet-derived cfRNA between cases and controls, as well as elevated levels of plasmacytoid dendritic, monocyte, and T cell–derived cfRNA"
Article | Thread
Microfluidic assessment of PO2-regulated RBC capillary velocity in ME/CFS — Guo et al.
"we demonstrated that RBCs from individuals with ME/CFS exhibited significantly impaired capillary velocity at reduced PO2 ex vivo using microfluidics"
Article | Thread
Health, labour market, and social service outcomes for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome on a health or disability related benefit: an Aotearoa | New Zealand nationwide cross-sectional study using the integrated data infrastructure — Bowden et al.
"People with ME/CFS on a benefit in NZ face substantial health burdens, economic vulnerability, and limited access to appropriate supports."
Preprint | Thread
ME/CFS and PASC Patient-Derived Immunoglobulin Complexes Disrupt Mitochondrial Function and Alter Inflammatory Marker Secretion — Zheng Liu et al.
Preprint | Thread
Long Covid research
Incidence of Long COVID Following Reinfection with COVID-19 — M Daniel Brannock et al.
RECOVER study. "We found that COVID-19 reinfection resulted in a roughly 35% increase in the incidence of long COVID in a matched cohort using observational electronic health records."
Preprint | Thread
Metabolic brain changes in post-acute COVID-19: systematic review and meta-analysis of [18F]-FDG-PET findings — Siqueira et al.
"Our key findings reveal a predominant pattern of glucose hypometabolism across various brain regions, with the frontal cortex being the most frequently affected area."
Article | Thread
Automatic detection of persistent physiological changes after COVID infection via wearable devices with potential for long COVID management — Borhani et al.
"In this retrospective study, we investigated wearables data from a large cohort of US military personnel and developed an objective method to detect chronic physiological changes post COVID-19 infection, leveraging a COVID-19-negative cohort for comparison."
Article | Thread
Mitochondrial function is impaired in long COVID patients — Jane Macnaughtan et al.
"Correlations were observed between mitochondrial function and autonomic health, quality of life and time from index infection. Sex-specific differences were also observed."
Article | Thread
Digital Biometric Measures in Long COVID: A Secondary Analysis of the STOP-PASC Randomized Clinical Trial — Fatma Gunturkun et al.
"This secondary analysis identified distinct longitudinal trajectories of physiological and behavioral digital biometric measures captured from wearable devices that reflect the heterogeneity and track with different symptoms of long COVID."
Article | Thread
Experiences of pacing to reduce symptoms among adults living with Long COVID in Canada, Ireland, the United Kingdom and the United States — McDuff et al.
"Adults living with Long COVID use analogies and metaphors to conceptualise and describe pacing, to enhance understanding and support for pacing. Health and rehabilitation providers should consider that pacing is challenging and complex, and work collaboratively with patients to implement this strategy, when appropriate."
Article | Thread
Variability in Long COVID Definitions and Validation of Published Prevalence Rates — Lauren E. Wisk et al.
"In this cohort study, variability in long COVID prevalence across published definitions highlights the need for a standardized, validated definition to improve clinical recognition and research comparability, ultimately guiding more accurate diagnosis and treatment strategies."
Article | Thread
Work Impairment and Financial Outcomes Among Adults With vs Without Long COVID — Michael Gottlieb et al.
"In this prospective cohort study of adults with SARS-CoV-2 infection, participants with current self-reported LC reported worse work impairment, missed work, and financial distress compared with those who never had LC"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Denmark A journal on health and politics, Sundhedspolitisk Tidsskrift, writes about a protest letter to the Danish Health Authority signed by 849 ME patients and carers. The letter criticises the Danish Health Authority for having invited the Patient Association for Functional Disorders as patients representatives in the work on developing new guidelines for ME/CFS. This may lead the work on a different path than of its original mandate and of international research.
Article l Thread
Austria
The Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna have published a new document with care advice for patients with (very) severe ME/CFS. The guide is in German and mostly based on the experiences of carers. It gives advice about practical things such as portable toilets, three-sided toothbrushes, customized earplugs, dimmable LED lights, etc.
Article | Thread
UK BACME The clinicians' organisation is running a survey on enteral feeding for people with very severe ME/CFS that is not open to the wider ME/CFS community, and a conference for clinicians on severe and very severe ME/CFS. Forum members are concerned about the content of both.
Thread
Germany
Der Spiegel has published an interview with psychotherapist Bettina Grande about the suffering, stigma, and neglect faced by those living with ME/CFS.
Article | Thread
BJGP (The British Journal of General Practice) "What does the fallout from the 'Salt Path' saga tell us about our society's idea about chronic illness and exercise?"
Thoughtful article by GP and Long Covid sufferer Elke Hausmann on how stories of "hope", and that exercise can only be healing are problematic, especially when it comes to illnesses such as ME/CFS. "It goes so against our societal bias that exercise is always good for you, that most people will uncritically believe the claims of those doctors who still propose ‘graded exercise therapy’ (GET) as a treatment for Long Covid or ME, long after this has been discredited over the voices of patients who are testifying in their many thousands that this is NOT good for us, and can even make us worse."
Article l Thread
.............
DecodeME
More media coverage of the DecodeME genome-wide association study of ME/CFS which was published as a preprint last week.
Thread
RNZ New Zealand radio programme Saturday Morning has a ten minute segment titled "Decoding ME/CFS" interviewing professor Chris Ponting from the DecodeME study.
newry.ie "Hope 4 ME & Fibro NI Welcome New Study Showing Genetic Proof of Biological Cause for M.E."
Irish news article. Joan McParland: "We urge the Department of Health and our elected representatives to respond to this evidence and finally deliver the services people with M.E. desperately need". Professor Tom Trinnick: "This will shape future research and focus treatment for this disabling chronic condition. These patients are very poorly served at present, often struggling with minimal or no support. This needs to change".
semafor Short news article titled "Study finds genetic clues to a chronically overlooked and debilitating condition"
The Dallas Express "Chronic Fatigue Syndrome? Blame Your Genes, Not Your Mind"
Smithsonian magazine "Scientists Find Links to Chronic Fatigue Syndrome in Genes and in the Gut Microbiome"
Today's Nature Briefing newsletter linked to Science's article last week about DecodeME
Deutsches Ärztheblatt A German news site for medical doctors with article titled: "ME/CFS: Evidence of genetic predisposition found" (paywalled)
science&vie Article in French science magazine titled "Do you suffer from chronic fatigue? It could be in your DNA, according to these researchers from the University of Edinburgh"
DerStandard Dutch news article titled "Chronic fatigue - Possible Genetic Background of ME/CFS Identified"
trouw Dutch news article titled "In ME/CFS patients, something in the body can now be identified that is linked to the disease" (paywalled)
La Repubblica Italian news article titled "Chronic Fatigue Syndrome: Possible Genetic Clues Discovered"
drportal.hu A Hungarian news site for health care workers with article titled "Understanding instead of stigmatization: a new chapter opens in chronic fatigue syndrome research"
Aftonbladet Swedish news article titled "New study can reveal who gets ME"
..................
Research news
Solve ME - PLRF Event Highlights Promising ME/CFS & Long Covid Biomedical Research Projects
A report on the findings presented on July 9 by researchers funded by the PLRF (Patient-led Research Fund).
Article | Thread
Solve M.E. and The Brain Inflammation Collaborative Launch the Unified Platform to Advance Research Across 30+ Chronic Conditions
The unhide® Solve Together Unified Platform is a digital health tool designed to uncover hidden connections between inflammation, chronic illness, and overall health.
Article | Thread
.................
Coming events
Stanford Genome Technology Center is hosting a virtual Community Symposium
Friday, Sept. 5, 8 AM - 1 PM Pacific Time
Speakers will present "findings on ME/CFS, what they believe is the cause of the disease, and how they are working towards a solution."
Registration | Thread
.............
Research
ME/CFS research
Circulating cell-free RNA signatures for the characterization and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome — Gardella et al.
"Immune cfRNA deconvolution revealed differences in platelet-derived cfRNA between cases and controls, as well as elevated levels of plasmacytoid dendritic, monocyte, and T cell–derived cfRNA"
Article | Thread
Microfluidic assessment of PO2-regulated RBC capillary velocity in ME/CFS — Guo et al.
"we demonstrated that RBCs from individuals with ME/CFS exhibited significantly impaired capillary velocity at reduced PO2 ex vivo using microfluidics"
Article | Thread
Health, labour market, and social service outcomes for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome on a health or disability related benefit: an Aotearoa | New Zealand nationwide cross-sectional study using the integrated data infrastructure — Bowden et al.
"People with ME/CFS on a benefit in NZ face substantial health burdens, economic vulnerability, and limited access to appropriate supports."
Preprint | Thread
ME/CFS and PASC Patient-Derived Immunoglobulin Complexes Disrupt Mitochondrial Function and Alter Inflammatory Marker Secretion — Zheng Liu et al.
Preprint | Thread
Long Covid research
Incidence of Long COVID Following Reinfection with COVID-19 — M Daniel Brannock et al.
RECOVER study. "We found that COVID-19 reinfection resulted in a roughly 35% increase in the incidence of long COVID in a matched cohort using observational electronic health records."
Preprint | Thread
Metabolic brain changes in post-acute COVID-19: systematic review and meta-analysis of [18F]-FDG-PET findings — Siqueira et al.
"Our key findings reveal a predominant pattern of glucose hypometabolism across various brain regions, with the frontal cortex being the most frequently affected area."
Article | Thread
Automatic detection of persistent physiological changes after COVID infection via wearable devices with potential for long COVID management — Borhani et al.
"In this retrospective study, we investigated wearables data from a large cohort of US military personnel and developed an objective method to detect chronic physiological changes post COVID-19 infection, leveraging a COVID-19-negative cohort for comparison."
Article | Thread
Mitochondrial function is impaired in long COVID patients — Jane Macnaughtan et al.
"Correlations were observed between mitochondrial function and autonomic health, quality of life and time from index infection. Sex-specific differences were also observed."
Article | Thread
Digital Biometric Measures in Long COVID: A Secondary Analysis of the STOP-PASC Randomized Clinical Trial — Fatma Gunturkun et al.
"This secondary analysis identified distinct longitudinal trajectories of physiological and behavioral digital biometric measures captured from wearable devices that reflect the heterogeneity and track with different symptoms of long COVID."
Article | Thread
Experiences of pacing to reduce symptoms among adults living with Long COVID in Canada, Ireland, the United Kingdom and the United States — McDuff et al.
"Adults living with Long COVID use analogies and metaphors to conceptualise and describe pacing, to enhance understanding and support for pacing. Health and rehabilitation providers should consider that pacing is challenging and complex, and work collaboratively with patients to implement this strategy, when appropriate."
Article | Thread
Variability in Long COVID Definitions and Validation of Published Prevalence Rates — Lauren E. Wisk et al.
"In this cohort study, variability in long COVID prevalence across published definitions highlights the need for a standardized, validated definition to improve clinical recognition and research comparability, ultimately guiding more accurate diagnosis and treatment strategies."
Article | Thread
Work Impairment and Financial Outcomes Among Adults With vs Without Long COVID — Michael Gottlieb et al.
"In this prospective cohort study of adults with SARS-CoV-2 infection, participants with current self-reported LC reported worse work impairment, missed work, and financial distress compared with those who never had LC"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 18th August 2025
News, advocacy and articles
Ireland
The Health Service Executive (HSE) in Ireland received funding to create the first HSE National Clinical Guideline for ME. The new guideline will aim to improve understanding, diagnosis, treatment, and management of ME in Ireland, resulting in quality care for people living with ME.
Article | Thread
Medscape Where Is the Medical Home for Postinfectious Illness?
Good article by Miriam Tucker where Brittany L. Adler, MD, Anthony L. Komaroff, MD, Brayden Yellman, MD and Lisa Sanders, MD weigh in on how the health care system better can facilitate care for patients with postinfectious illnesses.
Article l Thread
CounterPunch Myalgic Encephalomyelitis/Chronic fatigue syndrome and COVID - by Leonard Jason & Arthur A. Mirin
"The projections we summarize in this essay underscore the profound and growing public health burden posed by ME/CFS in the wake of the COVID-19 pandemic."
Article l Thread
Trial by Error by David Tuller Keystone Gathering Update; Anil's Severe ME Day Video; Fractured Care for Post-Infectious Illness
A recap via The Sick Times of the recent Keystone Symposia on Long Covid and other post-infection syndromes in New Mexico, a recommendation of Anil van der Zee's "haunting video" made for Severe ME Day, and on Miriam Tucker's Medscape article on how patients with post infectious illnesses are left without coordinated care (see item above).
Article l Thread
UK Community Practitioner ME - Let's Make a Difference
Health visitor and parent of a person with ME/CFS describes the lack of health service provision for people with ME/CFS and urges health practitioners to make a difference.
Article | Thread
Paradigms podcast
Dr Ken Friedman (Associate Professor of Pharmacology and Physiology, New Jersey Medical School, USA) and Dr Charles Shepherd (Hon Medical Adviser, ME Association, UK) were interviewed last week by Baruch Zeichner for a podcast that covers and contrasts the current situation regarding ME/CFS in America and the UK.
Duration 58 minutes.
MEA article with link to podcast | Thread
.............
DecodeME in the media
Thread
The Guardian A thorough podcast by Science Weekly titled "Can science crack the mystery of ME?"
"Madeleine Finlay speaks to science editor Ian Sample and to Nicky Proctor, who has ME and took part in the research. She also hears from Beth Pollack, a research scientist at the Massachusetts Institute of Technology who studies ME/CFS and related conditions, about how scientific understanding of the illness has improved and how scientists are transforming this knowledge into ideas about future treatments."
Podcast
Norway
Forskning.no: Gigantic study looked at the genes to ME patients - This is what they found.
Article
VG: New findings about ME: Should remove any doubt
Professor Karl Johan Tronstad says the findings are important and a large step towards a better understanding of the biological mechanisms behind ME. The study supports that the research field is on the right track towards finding treatments for patients. Professor Vegard B. B. Wyller don't think the study is any breakthrough nor that it can lead to better diagnosis or treatments.
Article
Malaysia The Star: "Scientists uncover genetic link to chronic fatigue syndrome"
Article
...............
Research news
Scientific Reports
The journal Scientific Reports has a special issue on post-actute infectious syndromes (PAIS). It welcomes "studies into improving diagnostics and tools to determine disease progression, pathways affected, and clinical interventions, both studies within and across infectious agents of PAIS."
Article | Thread
Solve ME Extracellular Vesicle Proteins in Men with ME/CFS: Changes Before and After Exercise Correlate with Key Symptoms
An article discussing recent research by Dr. Maureen Hansen's team.
Article | Thread
DecodeME
DecodeME has sent an email explaining that "the team will change, and some staff will be leaving, but the project - and the data - will live on." The new website for the study is available at: https://institute-genetics-cancer.ed.ac.uk/decodeme
Thread
The Initial results webinar held on 14th August is now available to watch or read the transcript. With Sonya Chowdhury, Chris Ponting and Andy Devereux-Cooke.
"This webinar covers the initial DNA results, what they mean for people with ME/CFS, what happens next, and a Q&A session"
Webinar and transcript | Thread
...........
Coming events
Stanford Genome Technology Center - Community Symposium on the Molecular Basis of ME/CFS
Friday, Sept. 5, 8 AM - 2:30 PM Pacific Time
Speakers will "present their findings on ME/CFS, what they believe is the cause of the disease, and how they are working towards a solution."
Announcement | Registration | Thread
...........
Research
ME/CFS research
The Importance of ‘In the Now’ Prospective Symptom Tracking in Chronic and Post-Viral Conditions: A Commentary — Lawrence D. Hayes et al.
"The growing adoption of symptom tracking technologies is producing vast datasets that capture behaviour patterns, environmental contexts, and physiological signals that can reveal disease dynamics."
Article | Thread
An integrative review on the orexin system and hypothalamic dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome: implications for precision medicine — Noé López-Amador
"Although preclinical and clinical findings link orexin deficiency to narcolepsy, fragmented sleep, and metabolic disruption, few studies directly measure orexin levels in ME/CFS cohorts. The prevailing assumption of orexinergic involvement remains more inferential than conclusive"
Article | Thread
Long Covid research
Metformin on the Presence of COVID-19 Symptoms Over 6 Months: The ACTIV-6 Randomized Clinical Trial — Carolyn T. Bramante et al.
"did not exceed the prespecified threshold of 0.975 for declaring efficacy."
Preprint | Thread
Accelerated vascular ageing after COVID-19 infection: the CARTESIAN study — Bruno et al.
"In this multinational study, after adjustment for confounders, COVID19-positive individuals showed higher pulse wave velocity (PWV) as compared to COVID19-negative individuals 6 months after COVID19. In sex-stratified analyses, increased PWV was present in women, but not in men. Early vascular ageing persisted, though attenuated, 12 months after COVID19."
Article | Thread
The silent legacy of COVID-19: exploring genomic instability in long-term COVID-19 survivors — Abiri et al.
"Post-COVID-19 patients exhibited significantly higher levels of DNA damage compared to healthy controls. The highest DNA damage was observed in intubated-ICU patients (mean DNA damage: 29.5%), followed by nonintubated-ICU patients (mean: 24.3%), non-ICU patients (mean: 19.1%), and healthy controls (mean: 9.4%)."
Article | Thread
“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome — Büchner et al.
"Higher ratings of stigmatization and psychologization correlated with many unfavorable outcomes like a loss of trust in medicine, a higher number of disclosure concerns, and lower life satisfaction. Relevant parts of the relationship between psychologization and outcomes were mediated by stigmatization, so from a patient perspective, psychologization appears to be an important driver of stigmatization and its negative outcomes."
Article | Thread
Excess primary healthcare consultations in Norway in 2024 compared to pre-COVID-19-pandemic baseline trends — Richard Aubrey White et al.
"Substantial increases were observed in primary healthcare consultations in 2024 compared to prepandemic levels. Many of the conditions with the greatest excess are associated with post-acute COVID-19 sequelae."
Preprint | Thread
Employment Status, Work Limitations, Cognitive Dysfunction, and Sickness Absenteeism Among US Adults With and Without Long COVID — Nicole D. Ford et al.
"3.4% of adults reported long COVID. Adults with long COVID more often reported being unable to work due to health or disability compared to adults without long COVID (p = 0.0006)."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Ireland
The Health Service Executive (HSE) in Ireland received funding to create the first HSE National Clinical Guideline for ME. The new guideline will aim to improve understanding, diagnosis, treatment, and management of ME in Ireland, resulting in quality care for people living with ME.
Article | Thread
Medscape Where Is the Medical Home for Postinfectious Illness?
Good article by Miriam Tucker where Brittany L. Adler, MD, Anthony L. Komaroff, MD, Brayden Yellman, MD and Lisa Sanders, MD weigh in on how the health care system better can facilitate care for patients with postinfectious illnesses.
Article l Thread
CounterPunch Myalgic Encephalomyelitis/Chronic fatigue syndrome and COVID - by Leonard Jason & Arthur A. Mirin
"The projections we summarize in this essay underscore the profound and growing public health burden posed by ME/CFS in the wake of the COVID-19 pandemic."
Article l Thread
Trial by Error by David Tuller Keystone Gathering Update; Anil's Severe ME Day Video; Fractured Care for Post-Infectious Illness
A recap via The Sick Times of the recent Keystone Symposia on Long Covid and other post-infection syndromes in New Mexico, a recommendation of Anil van der Zee's "haunting video" made for Severe ME Day, and on Miriam Tucker's Medscape article on how patients with post infectious illnesses are left without coordinated care (see item above).
Article l Thread
UK Community Practitioner ME - Let's Make a Difference
Health visitor and parent of a person with ME/CFS describes the lack of health service provision for people with ME/CFS and urges health practitioners to make a difference.
Article | Thread
Paradigms podcast
Dr Ken Friedman (Associate Professor of Pharmacology and Physiology, New Jersey Medical School, USA) and Dr Charles Shepherd (Hon Medical Adviser, ME Association, UK) were interviewed last week by Baruch Zeichner for a podcast that covers and contrasts the current situation regarding ME/CFS in America and the UK.
Duration 58 minutes.
MEA article with link to podcast | Thread
.............
DecodeME in the media
Thread
The Guardian A thorough podcast by Science Weekly titled "Can science crack the mystery of ME?"
"Madeleine Finlay speaks to science editor Ian Sample and to Nicky Proctor, who has ME and took part in the research. She also hears from Beth Pollack, a research scientist at the Massachusetts Institute of Technology who studies ME/CFS and related conditions, about how scientific understanding of the illness has improved and how scientists are transforming this knowledge into ideas about future treatments."
Podcast
Norway
Forskning.no: Gigantic study looked at the genes to ME patients - This is what they found.
Article
VG: New findings about ME: Should remove any doubt
Professor Karl Johan Tronstad says the findings are important and a large step towards a better understanding of the biological mechanisms behind ME. The study supports that the research field is on the right track towards finding treatments for patients. Professor Vegard B. B. Wyller don't think the study is any breakthrough nor that it can lead to better diagnosis or treatments.
Article
Malaysia The Star: "Scientists uncover genetic link to chronic fatigue syndrome"
Article
...............
Research news
Scientific Reports
The journal Scientific Reports has a special issue on post-actute infectious syndromes (PAIS). It welcomes "studies into improving diagnostics and tools to determine disease progression, pathways affected, and clinical interventions, both studies within and across infectious agents of PAIS."
Article | Thread
Solve ME Extracellular Vesicle Proteins in Men with ME/CFS: Changes Before and After Exercise Correlate with Key Symptoms
An article discussing recent research by Dr. Maureen Hansen's team.
Article | Thread
DecodeME
DecodeME has sent an email explaining that "the team will change, and some staff will be leaving, but the project - and the data - will live on." The new website for the study is available at: https://institute-genetics-cancer.ed.ac.uk/decodeme
Thread
The Initial results webinar held on 14th August is now available to watch or read the transcript. With Sonya Chowdhury, Chris Ponting and Andy Devereux-Cooke.
"This webinar covers the initial DNA results, what they mean for people with ME/CFS, what happens next, and a Q&A session"
Webinar and transcript | Thread
...........
Coming events
Stanford Genome Technology Center - Community Symposium on the Molecular Basis of ME/CFS
Friday, Sept. 5, 8 AM - 2:30 PM Pacific Time
Speakers will "present their findings on ME/CFS, what they believe is the cause of the disease, and how they are working towards a solution."
Announcement | Registration | Thread
...........
Research
ME/CFS research
The Importance of ‘In the Now’ Prospective Symptom Tracking in Chronic and Post-Viral Conditions: A Commentary — Lawrence D. Hayes et al.
"The growing adoption of symptom tracking technologies is producing vast datasets that capture behaviour patterns, environmental contexts, and physiological signals that can reveal disease dynamics."
Article | Thread
An integrative review on the orexin system and hypothalamic dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome: implications for precision medicine — Noé López-Amador
"Although preclinical and clinical findings link orexin deficiency to narcolepsy, fragmented sleep, and metabolic disruption, few studies directly measure orexin levels in ME/CFS cohorts. The prevailing assumption of orexinergic involvement remains more inferential than conclusive"
Article | Thread
Long Covid research
Metformin on the Presence of COVID-19 Symptoms Over 6 Months: The ACTIV-6 Randomized Clinical Trial — Carolyn T. Bramante et al.
"did not exceed the prespecified threshold of 0.975 for declaring efficacy."
Preprint | Thread
Accelerated vascular ageing after COVID-19 infection: the CARTESIAN study — Bruno et al.
"In this multinational study, after adjustment for confounders, COVID19-positive individuals showed higher pulse wave velocity (PWV) as compared to COVID19-negative individuals 6 months after COVID19. In sex-stratified analyses, increased PWV was present in women, but not in men. Early vascular ageing persisted, though attenuated, 12 months after COVID19."
Article | Thread
The silent legacy of COVID-19: exploring genomic instability in long-term COVID-19 survivors — Abiri et al.
"Post-COVID-19 patients exhibited significantly higher levels of DNA damage compared to healthy controls. The highest DNA damage was observed in intubated-ICU patients (mean DNA damage: 29.5%), followed by nonintubated-ICU patients (mean: 24.3%), non-ICU patients (mean: 19.1%), and healthy controls (mean: 9.4%)."
Article | Thread
“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome — Büchner et al.
"Higher ratings of stigmatization and psychologization correlated with many unfavorable outcomes like a loss of trust in medicine, a higher number of disclosure concerns, and lower life satisfaction. Relevant parts of the relationship between psychologization and outcomes were mediated by stigmatization, so from a patient perspective, psychologization appears to be an important driver of stigmatization and its negative outcomes."
Article | Thread
Excess primary healthcare consultations in Norway in 2024 compared to pre-COVID-19-pandemic baseline trends — Richard Aubrey White et al.
"Substantial increases were observed in primary healthcare consultations in 2024 compared to prepandemic levels. Many of the conditions with the greatest excess are associated with post-acute COVID-19 sequelae."
Preprint | Thread
Employment Status, Work Limitations, Cognitive Dysfunction, and Sickness Absenteeism Among US Adults With and Without Long COVID — Nicole D. Ford et al.
"3.4% of adults reported long COVID. Adults with long COVID more often reported being unable to work due to health or disability compared to adults without long COVID (p = 0.0006)."
Article | Thread
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