News in Brief - November 2025
- Thread starter S4ME News
- Start date
-
- Tags
- news news in brief
Week beginning 3rd November 2025
News, advocacy and articles
Australia - Emerge From Stigma to Science: Educating for Change
On Thursday 30 October, at Australian Parliament House, Emerge Australia hosted an ME/CFS and long COVID Action Forum. The forum brought together people with lived experience, researchers, clinicians, parliamentarians, and departmental representatives. Prof. Chris Ponting discusses the huge personal, social and economic burden and the essential requirement for countries to have a national ME/CFS strategy.
Emerge | YouTube | Thread
David Tuller Interview with Brian Hughes, professor of psychology at University of Galway in Ireland
A very interesting interview with professor Brian Hughes about his latest book "Psychology's Quiet Conservatism: How a Supposedly Woke Science Promotes Capitalism and Protects Privilege".
From the description on YouTube: "Professor Hughes has for years sough to counter the psychogenic framing of ME, ME/CFS, Long COVID, and related complex conditions--a theme he explores in the new book. In this interview, he explains why the psychogenic approach is fundamentally regressive and ends up depriving people of the medical care they need and deserve."
Interview l Thread
UK Goverment report Keep Britain Working
On 5 November 2025, the UK Government announced a new partnership with major employers to tackle rising economic inactivity linked to long-term sickness.
The ME Association welfare rights consultant, Ella Smith, raises concerns in an article, inviting comments. "The idea that work can always be retained with the right support fails to recognise the reality for those with severe or very fluctuating symptoms."
Government report | MEA article | Thread
UK ME Association provides useful resources for those in the UK with ME/CFS who want NHS funded influenza vaccination from a pharmacy.
Article | Thread
USA - Westword "Art Show It Comes in Waves Brings Long COVID Stories to Light"
Article discussing an art exhibition in Aurora, Colorado, which features artwork made by people with Long Covid. It Comes in Waves runs through December 30.
Article | Thread
Canada - Medscape "Canadian Cardiologists Must Step Up Care for Long COVID"
Report on an educational session from the Canadian Cardiovascular Congress (CCC) 2025 about cardiovascular issues associated with Long Covid.
Article | Thread
..............
Coming events
#MEAction - Two webinars on caregiving
Free tickets available on request.
"Top 10 Lessons from 20 Years of Caregiving webinar with Kim Moy"
Sunday, November 16, 3 pm EST/noon PST
Tickets | Thread
"Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Mojano"
Sunday, November 22, 3 pm EST/noon PST
Tickets | Thread
UK Action for ME Webinar: Final findings from the LOCOME Research Project
Monday 24 November at 3pm (UK time)
The LOCOME Project, a collaboration between PrecisionLife, Action for ME, and the University of Edinburgh, is nearing completion at the end of November. The project has used large-scale data analysis to explore genetic patterns that could help identify similarities and differences between ME/CFS and Long Covid. Open to all.
Article | Registration | Thread
..............
Research news
UK Edinburgh University PhD 3 year funded fellowship. Closing date 16th January 2026
Personalised blood-based biomarkers for ME/CFS symptom severity
"Samples would be collected as dried blood spots, provided in participants’ homes, and protein levels would be measured via Olink proximity extension assays"
Details | Thread
UK ME/CFS Biobank The ME Association reports from the biobank steering group meeting in September, including news on further sample collections and projects using the samples.
Article | Thread
UK ME Association Research: New funding awarded to PhD project that will identify key metabolites and infection markers in ME/CFS, funded by the MEA and UKRI, PhD candidate Aleyna Lumsden, under the supervision of Dr Bela Paizs and Professor Karl Morten, "using advanced informatics and mass spectrometry to investigate biological signatures of ME/CFS."
Article | Thread
Medscape Research Into ME/CFS Pathology Points to Possible Treatments -
Miriam E. Tucker
"At International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 2025, speakers summarized their research into the underlying pathomechanisms of ME/CFS and long COVID and the potential for treatment approaches specifically targeting those identified abnormalities."
Article | Thread
USA - Stanford Genome Technology Center
A playlist of recordings from the September 5 Community Symposium have been posted on YouTube.
Videos | Thread
..............
Research
ME/CFS research
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS — Shima Shahbaz et al.
"Hormonal analysis shows reduced testosterone in [females] and estradiol in [males]. Transcriptomic data reveal neuroinflammatory signatures in [females], potentially explaining cognitive symptoms. We also identify biomarkers that distinguish [females] from [males] and correlate with sex-specific clinical symptoms."
Article | Thread
A Comparative Study of the Coagulation Systems and Inflammatory Profiles of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Patients with Long COVID — Hayley Emma Arron
"These techniques demonstrated how standard laboratory tests are inefficient in revealing pathological alterations in Long COVID and ME/CFS, and how the insignificance of these results has prompted researchers and healthcare professionals to question the validity of these conditions."
Thesis | Thread
Chronic Pain Prevalence, Characteristics, and Impact in United States Adults With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis — Jenna L. Adamowicz et al.
"even though the majority of individuals with CFS/ME experience pain that is chronic, there appears a sizable subset in which the experience of pain may be less pronounced."
Article | Thread
Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post-Acute Sequelae of COVID-19 — Berardi, Giovanni et al.
"the purpose of the current study was to characterize PESE using a daily trajectory rating of 8 commonly reported symptoms, before and for 7 days after, a moderate intensity exercise task in individuals with ME/CFS and PASC, when compared to matched controls."
Article | Thread
Long Covid research
Transcriptome analysis of classical blood cells reveals down-regulation of proinflammatory genes in the classical monocytes of Long-COVID patients — Fricke et al.
"UMAP clustering of cells revealed distinct expression profiles between patients and controls in classical and intermediate, but not non-classical, monocytes. Differential gene expression analysis, based on a fold change threshold greater than 3 and a p-value threshold below 10−18, identified 40 DEGs in classical, 13 in intermediate, and 6 in non-classical monocytes, while other cell types showed minimal changes."
Article | Thread
SARS-CoV-2 spike triggers TLR7-dependent endolysosome dysfunction and senescence in human astrocytes — Hasler et al.
"Notably, TLR7 knockdown abolished S1-induced phosphorylation of p38 MAPK and ERK MAPK, suggesting that activation of p38 and ERK occurs downstream of the S1-TLR7 interaction."
Article | Thread
Preventive effect of vaccination on long COVID in adolescents with SARS-CoV-2 infection — Thaweethai et al.
RECOVER study. "The risks of severe LC were 6.1% and 4.7% in unvaccinated and vaccinated participants, respectively [RR 0.77 (95 % CI: 0.48, 1.26)]."
Article | Thread
Optimizing the schedule of BNT162b2 COVID-19 against long COVID and associated quality of life losses — Kuodi et al.
"We found that individuals who received at least three vaccine doses before getting infected were less likely to report long COVID symptoms and had better quality of life. In contrast, vaccination after infection showed no benefit."
Article | Thread
Does C1 esterase inhibitor play a role in post COVID-19 neurological symptoms? A randomized, double-blind, placebo-controlled, crossover, proof-of-concept study — Melamed et al.
"In this study, a dysfunction in TLR signaling response (TNFα, IL-1β, and IL-6) was demonstrated in patients with SARS-CoV-2 post-viral fatigue syndrome, suggesting a possible dysregulation of innate immunity in these patients."
Article | Thread
Synopsis of 2024 VA Long COVID Clinical Guidance for U.S. Veterans: Part 1, Nervous System–Related Symptoms — Wander et al.
"Although we found the quantity and quality of evidence to be limited, in combination with other considerations, we used this evidence base and our framework to develop an approach to the management of Long COVID nervous system–related symptoms comprising 30 Evidence-informed Recommendations and 41 Good Practice Statements that we believe to be clinically useful and concordant with the evidence that we found."
Article | Thread
The second-order effects that the COVID-19 pandemic has had on pediatric populations — Lael M. Yonker et al.
"As viral infections affect millions of children every year, SARS-CoV-2 has given us a major opportunity to accelerate the scientific interest toward post-acute outcomes of infections. This will probably revolutionize the way we see current neglected conditions like Long Covid and post-viral Myalgic encephalomyelitis/chronic fatigue syndromes (ME/CFS)."
Article | Thread
Experiences of accessing primary care by those living with long Covid in New Zealand: A qualitative analysis — Sarah Rhodes and Christina Douglas
"With the current pressure on the NZ health system, and the failure of Government to provide dedicated funding for long Covid several undesirable outcomes look increasingly likely: inadequate support for patients presenting with this complex and disabling condition, even greater pressure on the primary care system, and wider health disparities, particularly for Māori and Pacific peoples."
Article | Thread
What Can We Learn Four Years On? A Multi-Centre Service Evaluation Exploring Symptoms, Functional Impact, Recovery and Care Pathways in Long Covid — Cassie Lee et al.
"The persistent clinical and socio‐economic burden of LC is clear, with only 20.8% of participants working at pre‐infection capacity. Policymakers and service leaders should act to close the gap between LC service provision and patient need. There is a critical window of opportunity for ICBs to redesign services in collaboration with and informed by the patients' voice"
Article | Thread
Impact of long COVID phenotypes on quality of life following symptomatic omicron infection in Brazil: a machine learning analysis — Scolari et al.
"In this study, we investigated the phenotypic characteristics of patients with persistent symptoms three months after the initial infection"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
News, advocacy and articles
Australia - Emerge From Stigma to Science: Educating for Change
On Thursday 30 October, at Australian Parliament House, Emerge Australia hosted an ME/CFS and long COVID Action Forum. The forum brought together people with lived experience, researchers, clinicians, parliamentarians, and departmental representatives. Prof. Chris Ponting discusses the huge personal, social and economic burden and the essential requirement for countries to have a national ME/CFS strategy.
Emerge | YouTube | Thread
David Tuller Interview with Brian Hughes, professor of psychology at University of Galway in Ireland
A very interesting interview with professor Brian Hughes about his latest book "Psychology's Quiet Conservatism: How a Supposedly Woke Science Promotes Capitalism and Protects Privilege".
From the description on YouTube: "Professor Hughes has for years sough to counter the psychogenic framing of ME, ME/CFS, Long COVID, and related complex conditions--a theme he explores in the new book. In this interview, he explains why the psychogenic approach is fundamentally regressive and ends up depriving people of the medical care they need and deserve."
Interview l Thread
UK Goverment report Keep Britain Working
On 5 November 2025, the UK Government announced a new partnership with major employers to tackle rising economic inactivity linked to long-term sickness.
The ME Association welfare rights consultant, Ella Smith, raises concerns in an article, inviting comments. "The idea that work can always be retained with the right support fails to recognise the reality for those with severe or very fluctuating symptoms."
Government report | MEA article | Thread
UK ME Association provides useful resources for those in the UK with ME/CFS who want NHS funded influenza vaccination from a pharmacy.
Article | Thread
USA - Westword "Art Show It Comes in Waves Brings Long COVID Stories to Light"
Article discussing an art exhibition in Aurora, Colorado, which features artwork made by people with Long Covid. It Comes in Waves runs through December 30.
Article | Thread
Canada - Medscape "Canadian Cardiologists Must Step Up Care for Long COVID"
Report on an educational session from the Canadian Cardiovascular Congress (CCC) 2025 about cardiovascular issues associated with Long Covid.
Article | Thread
..............
Coming events
#MEAction - Two webinars on caregiving
Free tickets available on request.
"Top 10 Lessons from 20 Years of Caregiving webinar with Kim Moy"
Sunday, November 16, 3 pm EST/noon PST
Tickets | Thread
"Chronic Illness Caregiving for Youth, Teen, and Adult Children with Denise Lopez-Mojano"
Sunday, November 22, 3 pm EST/noon PST
Tickets | Thread
UK Action for ME Webinar: Final findings from the LOCOME Research Project
Monday 24 November at 3pm (UK time)
The LOCOME Project, a collaboration between PrecisionLife, Action for ME, and the University of Edinburgh, is nearing completion at the end of November. The project has used large-scale data analysis to explore genetic patterns that could help identify similarities and differences between ME/CFS and Long Covid. Open to all.
Article | Registration | Thread
..............
Research news
UK Edinburgh University PhD 3 year funded fellowship. Closing date 16th January 2026
Personalised blood-based biomarkers for ME/CFS symptom severity
"Samples would be collected as dried blood spots, provided in participants’ homes, and protein levels would be measured via Olink proximity extension assays"
Details | Thread
UK ME/CFS Biobank The ME Association reports from the biobank steering group meeting in September, including news on further sample collections and projects using the samples.
Article | Thread
UK ME Association Research: New funding awarded to PhD project that will identify key metabolites and infection markers in ME/CFS, funded by the MEA and UKRI, PhD candidate Aleyna Lumsden, under the supervision of Dr Bela Paizs and Professor Karl Morten, "using advanced informatics and mass spectrometry to investigate biological signatures of ME/CFS."
Article | Thread
Medscape Research Into ME/CFS Pathology Points to Possible Treatments -
Miriam E. Tucker
"At International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 2025, speakers summarized their research into the underlying pathomechanisms of ME/CFS and long COVID and the potential for treatment approaches specifically targeting those identified abnormalities."
Article | Thread
USA - Stanford Genome Technology Center
A playlist of recordings from the September 5 Community Symposium have been posted on YouTube.
Videos | Thread
..............
Research
ME/CFS research
Integrated immune, hormonal, and transcriptomic profiling reveals sex-specific dysregulation in long COVID patients with ME/CFS — Shima Shahbaz et al.
"Hormonal analysis shows reduced testosterone in [females] and estradiol in [males]. Transcriptomic data reveal neuroinflammatory signatures in [females], potentially explaining cognitive symptoms. We also identify biomarkers that distinguish [females] from [males] and correlate with sex-specific clinical symptoms."
Article | Thread
A Comparative Study of the Coagulation Systems and Inflammatory Profiles of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Patients with Long COVID — Hayley Emma Arron
"These techniques demonstrated how standard laboratory tests are inefficient in revealing pathological alterations in Long COVID and ME/CFS, and how the insignificance of these results has prompted researchers and healthcare professionals to question the validity of these conditions."
Thesis | Thread
Chronic Pain Prevalence, Characteristics, and Impact in United States Adults With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis — Jenna L. Adamowicz et al.
"even though the majority of individuals with CFS/ME experience pain that is chronic, there appears a sizable subset in which the experience of pain may be less pronounced."
Article | Thread
Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Post-Acute Sequelae of COVID-19 — Berardi, Giovanni et al.
"the purpose of the current study was to characterize PESE using a daily trajectory rating of 8 commonly reported symptoms, before and for 7 days after, a moderate intensity exercise task in individuals with ME/CFS and PASC, when compared to matched controls."
Article | Thread
Long Covid research
Transcriptome analysis of classical blood cells reveals down-regulation of proinflammatory genes in the classical monocytes of Long-COVID patients — Fricke et al.
"UMAP clustering of cells revealed distinct expression profiles between patients and controls in classical and intermediate, but not non-classical, monocytes. Differential gene expression analysis, based on a fold change threshold greater than 3 and a p-value threshold below 10−18, identified 40 DEGs in classical, 13 in intermediate, and 6 in non-classical monocytes, while other cell types showed minimal changes."
Article | Thread
SARS-CoV-2 spike triggers TLR7-dependent endolysosome dysfunction and senescence in human astrocytes — Hasler et al.
"Notably, TLR7 knockdown abolished S1-induced phosphorylation of p38 MAPK and ERK MAPK, suggesting that activation of p38 and ERK occurs downstream of the S1-TLR7 interaction."
Article | Thread
Preventive effect of vaccination on long COVID in adolescents with SARS-CoV-2 infection — Thaweethai et al.
RECOVER study. "The risks of severe LC were 6.1% and 4.7% in unvaccinated and vaccinated participants, respectively [RR 0.77 (95 % CI: 0.48, 1.26)]."
Article | Thread
Optimizing the schedule of BNT162b2 COVID-19 against long COVID and associated quality of life losses — Kuodi et al.
"We found that individuals who received at least three vaccine doses before getting infected were less likely to report long COVID symptoms and had better quality of life. In contrast, vaccination after infection showed no benefit."
Article | Thread
Does C1 esterase inhibitor play a role in post COVID-19 neurological symptoms? A randomized, double-blind, placebo-controlled, crossover, proof-of-concept study — Melamed et al.
"In this study, a dysfunction in TLR signaling response (TNFα, IL-1β, and IL-6) was demonstrated in patients with SARS-CoV-2 post-viral fatigue syndrome, suggesting a possible dysregulation of innate immunity in these patients."
Article | Thread
Synopsis of 2024 VA Long COVID Clinical Guidance for U.S. Veterans: Part 1, Nervous System–Related Symptoms — Wander et al.
"Although we found the quantity and quality of evidence to be limited, in combination with other considerations, we used this evidence base and our framework to develop an approach to the management of Long COVID nervous system–related symptoms comprising 30 Evidence-informed Recommendations and 41 Good Practice Statements that we believe to be clinically useful and concordant with the evidence that we found."
Article | Thread
The second-order effects that the COVID-19 pandemic has had on pediatric populations — Lael M. Yonker et al.
"As viral infections affect millions of children every year, SARS-CoV-2 has given us a major opportunity to accelerate the scientific interest toward post-acute outcomes of infections. This will probably revolutionize the way we see current neglected conditions like Long Covid and post-viral Myalgic encephalomyelitis/chronic fatigue syndromes (ME/CFS)."
Article | Thread
Experiences of accessing primary care by those living with long Covid in New Zealand: A qualitative analysis — Sarah Rhodes and Christina Douglas
"With the current pressure on the NZ health system, and the failure of Government to provide dedicated funding for long Covid several undesirable outcomes look increasingly likely: inadequate support for patients presenting with this complex and disabling condition, even greater pressure on the primary care system, and wider health disparities, particularly for Māori and Pacific peoples."
Article | Thread
What Can We Learn Four Years On? A Multi-Centre Service Evaluation Exploring Symptoms, Functional Impact, Recovery and Care Pathways in Long Covid — Cassie Lee et al.
"The persistent clinical and socio‐economic burden of LC is clear, with only 20.8% of participants working at pre‐infection capacity. Policymakers and service leaders should act to close the gap between LC service provision and patient need. There is a critical window of opportunity for ICBs to redesign services in collaboration with and informed by the patients' voice"
Article | Thread
Impact of long COVID phenotypes on quality of life following symptomatic omicron infection in Brazil: a machine learning analysis — Scolari et al.
"In this study, we investigated the phenotypic characteristics of patients with persistent symptoms three months after the initial infection"
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Week beginning 10th November 2025
Part 1 of 2
News, advocacy and articles
Germany
The German federal government plans to invest half a billion euros in research on diseases such as ME/CFS and Long Covid. They are calling it "The National Decade Against Post-Infectious Diseases". The decade runs from 2026 to 2036 and has a total budget of approximately € 50 million per year.
Article | Thread
Austria
New data on ME/CFS show the continuing problems that the pension insurance (PVA) has with the disease. In 2024, the rejection rate of ME/CFS applications increased to 66 percent.
Article | Thread
UK Government debate on ME/CFS
MP Tessa Munt has tabled a debate on Government support for ME/CFS in Westminster Hall on 19 November 2025. #ThereForMe have further information and a template letter people can use to ask their MP to attend.
Note that this is not in the main chamber. Further information on Westminster Hall and the meaning of debates held here can be read at the link below.
ThereForMe | Info | Thread
UK BMA and RCN ask Government to recognise Long COVID as an occupational disease
Unions representing Doctors and Nurses in the UK are asking the government to recognise the long term impacts of COVID-19 on health and care workers.
“The UK Government needs to act quickly and provide support now to the many doctors and nursing staff, and their families, who have suffered significant financial losses as a result of contracting COVID-19 in the workplace and then developing Long COVID.”
Website | Thread
UK Action for ME Big Survey updates
The survey is open until 27 January and @kacheston who is working with Action for ME on this has offered to answer any questions people have on the forum.
It has also been highlighted that the survey data will be used to compare findings with other epidemiological studies into ME/CFS.
Survey | Thread
UK BACME ME/CFS Guide to Therapy 2025
The British Association of Clinicians in ME/CFS have published an updated guide. Forum discussion raises serious concerns about their therapist-led rehabilitation approach including pacing-up.
BACME guide | Thread
Norway Researcher and sociologist Anne Kielland has written a clear opinion piece on the symbolic violence in the face of public services, using her research into how ME patients are treated as examples.
"There are no public treatment options for the group, and they seem to fall between all the chairs in the available options."
Article (Norwegian) l Thread
Sweden A well written opinion piece in the journal for the Swedish Medical Association on the harms of classifying and treating ME/CFS and Long Covid as functional disorders. Authors: Sten Helmfrid, Kerstin Heiling, Jonas Bergquist, Anders Rosen, Per Julin, Bo Christer Bertilson, Per Sjogren, Judith Bruchfeld and Lisa Norén.
Article (Swedish) l Thread
Germany A new article in Der Spiegel focused on severe ME/CFS and Long Covid. It highlight the story of 29-year-old Natascha whose is taken care of by family and friends. They advocate and fight for better medical care and support.
Article | Thread
The Sick Times "Long COVID advocacy is more than lobbying Congress: Here are some ways to get involved"
Discussion of different advocacy strategies used by patient groups around the world.
Article | Thread
The Sick Times Alice Wong, disability activist and luminary, dies at 51
"Alice Wong platformed and uplifted people with Long COVID in her final chapter as a lifelong disability advocate and storyteller"
Article | In Memorium Members' Thread
..........
Research news
PolyBio Fall Symposium 2025
Multiple researchers funded through PolyBio give 10 minute research updates.
Speakers | YouTube | The Sick Times Live Blog | Thread
Portugal 2025 International Long Covid Conference
November 12–13, 2025, held in Porto, Portugal and online. To raise awareness, promote understanding, and stimulate dialogue among healthcare professionals, researchers, policymakers, patients, and advocates about ME/CFS, Long COVID, and other post-viral fatiguing illnesses.
Speakers | Video Day 1 | Video Day 2 | Thread
Australia La Trobe University
Dr Daniel Missailidis calls for female ME/CFS participants in Victoria to donate a single blood sample. This study is investigating platelets in ME/CFS.
Study Information & Consent Forms | Thread
ME Research UK announces funding for study on the role of autoimmunity in ME/CFS
“Following on from his previous work, Prof. Prusty will look at the mechanisms through which immunoglobulins from ME/CFS patients can cause dysfunction of the mitochondria”
Website | Research | Thread
Bateman Horne Center "My Reflections on the 2025 IACFSME Conference"
Blog post from Dr. Lucinda Bateman discussing presentations made at the 2025 IACFSME Conference.
Blog | Thread
.........
Coming events
UK Action for ME LOCOME Research Webinar rescheduled
The LOCOME Project, a collaboration between PrecisionLife, Action for ME, and the University of Edinburgh, is nearing completion at the end of November. A Webinar with details of the results was expected on Nov 24th but has now been rescheduled to Dec 5 at 2PM.
Register | Website | Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, November 18, 1:00 - 2:00 PM Mountain Time
Topic: Acquainted with Grief: Growing through Ambiguous Loss
Tuesday, December 9, 1:00 - 2:00 PM Mountain Time
Topic: Freedom from Thinking Traps Amidst Chronic Disease
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
.........
Go to the next post for the research section
Part 1 of 2
News, advocacy and articles
Germany
The German federal government plans to invest half a billion euros in research on diseases such as ME/CFS and Long Covid. They are calling it "The National Decade Against Post-Infectious Diseases". The decade runs from 2026 to 2036 and has a total budget of approximately € 50 million per year.
Article | Thread
Austria
New data on ME/CFS show the continuing problems that the pension insurance (PVA) has with the disease. In 2024, the rejection rate of ME/CFS applications increased to 66 percent.
Article | Thread
UK Government debate on ME/CFS
MP Tessa Munt has tabled a debate on Government support for ME/CFS in Westminster Hall on 19 November 2025. #ThereForMe have further information and a template letter people can use to ask their MP to attend.
Note that this is not in the main chamber. Further information on Westminster Hall and the meaning of debates held here can be read at the link below.
ThereForMe | Info | Thread
UK BMA and RCN ask Government to recognise Long COVID as an occupational disease
Unions representing Doctors and Nurses in the UK are asking the government to recognise the long term impacts of COVID-19 on health and care workers.
“The UK Government needs to act quickly and provide support now to the many doctors and nursing staff, and their families, who have suffered significant financial losses as a result of contracting COVID-19 in the workplace and then developing Long COVID.”
Website | Thread
UK Action for ME Big Survey updates
The survey is open until 27 January and @kacheston who is working with Action for ME on this has offered to answer any questions people have on the forum.
It has also been highlighted that the survey data will be used to compare findings with other epidemiological studies into ME/CFS.
Survey | Thread
UK BACME ME/CFS Guide to Therapy 2025
The British Association of Clinicians in ME/CFS have published an updated guide. Forum discussion raises serious concerns about their therapist-led rehabilitation approach including pacing-up.
BACME guide | Thread
Norway Researcher and sociologist Anne Kielland has written a clear opinion piece on the symbolic violence in the face of public services, using her research into how ME patients are treated as examples.
"There are no public treatment options for the group, and they seem to fall between all the chairs in the available options."
Article (Norwegian) l Thread
Sweden A well written opinion piece in the journal for the Swedish Medical Association on the harms of classifying and treating ME/CFS and Long Covid as functional disorders. Authors: Sten Helmfrid, Kerstin Heiling, Jonas Bergquist, Anders Rosen, Per Julin, Bo Christer Bertilson, Per Sjogren, Judith Bruchfeld and Lisa Norén.
Article (Swedish) l Thread
Germany A new article in Der Spiegel focused on severe ME/CFS and Long Covid. It highlight the story of 29-year-old Natascha whose is taken care of by family and friends. They advocate and fight for better medical care and support.
Article | Thread
The Sick Times "Long COVID advocacy is more than lobbying Congress: Here are some ways to get involved"
Discussion of different advocacy strategies used by patient groups around the world.
Article | Thread
The Sick Times Alice Wong, disability activist and luminary, dies at 51
"Alice Wong platformed and uplifted people with Long COVID in her final chapter as a lifelong disability advocate and storyteller"
Article | In Memorium Members' Thread
..........
Research news
PolyBio Fall Symposium 2025
Multiple researchers funded through PolyBio give 10 minute research updates.
Speakers | YouTube | The Sick Times Live Blog | Thread
Portugal 2025 International Long Covid Conference
November 12–13, 2025, held in Porto, Portugal and online. To raise awareness, promote understanding, and stimulate dialogue among healthcare professionals, researchers, policymakers, patients, and advocates about ME/CFS, Long COVID, and other post-viral fatiguing illnesses.
Speakers | Video Day 1 | Video Day 2 | Thread
Australia La Trobe University
Dr Daniel Missailidis calls for female ME/CFS participants in Victoria to donate a single blood sample. This study is investigating platelets in ME/CFS.
Study Information & Consent Forms | Thread
ME Research UK announces funding for study on the role of autoimmunity in ME/CFS
“Following on from his previous work, Prof. Prusty will look at the mechanisms through which immunoglobulins from ME/CFS patients can cause dysfunction of the mitochondria”
Website | Research | Thread
Bateman Horne Center "My Reflections on the 2025 IACFSME Conference"
Blog post from Dr. Lucinda Bateman discussing presentations made at the 2025 IACFSME Conference.
Blog | Thread
.........
Coming events
UK Action for ME LOCOME Research Webinar rescheduled
The LOCOME Project, a collaboration between PrecisionLife, Action for ME, and the University of Edinburgh, is nearing completion at the end of November. A Webinar with details of the results was expected on Nov 24th but has now been rescheduled to Dec 5 at 2PM.
Register | Website | Thread
Bateman Horne Center - Free Online Support Groups
Tuesday, November 18, 1:00 - 2:00 PM Mountain Time
Topic: Acquainted with Grief: Growing through Ambiguous Loss
Tuesday, December 9, 1:00 - 2:00 PM Mountain Time
Topic: Freedom from Thinking Traps Amidst Chronic Disease
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
.........
Go to the next post for the research section
Last edited by a moderator:
Week beginning 10th November 2025
Part 2 of 2
Research
ME/CFS research
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion — Arnaud Germain et al.
"To investigate the molecular basis of post-exertional malaise in ME/CFS, we performed longitudinal plasma proteomics in 132 individuals undergoing two maximal exercise tests. ME/CFS patients showed persistent immune, metabolic, and neuromuscular dysregulation during recovery, including suppression of T and B cell signaling and activation of glycolytic stress pathways. Protein changes were linked to symptom severity and reduced exercise capacity, with distinct sex-specific responses."
Article | Thread
Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise — Mancini et al.
"In the ME/CFS group, dysfunctional breathing was the most common ventilatory abnormality, followed by hyperventilation. The breathing patterns were mostly reproducible across consecutive studies. There was considerable overlap between DB and HV in the patients with ME/CFS, which was not observed in the sedentary controls."
Article | Thread
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Rohrhofer et al.
"our findings suggest that the prevalence of MCA increases with ME/CFS disease progression." "Limitations of our study include its reliance on self-reported data in the CCCFS patient cohort, the retrospective design of the ME/CFS-MCA patient cohort, and potential differences in MCAS diagnostic procedure."
Article | Thread
The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction — Elremaly et al.
Review. "We explore how nuclear and mitochondrial DNA influence disease risk, symptom manifestation, and cellular dysregulation, with particular focus on genetic variants, mitochondrial bioenergetics, epigenetic modifications, and transposable element activation."
Article | Thread
Muscle strength, muscle endurance, voluntary activation, and perception of effort in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an overview — James L. Nuzzo et al.
Review article.
Article | Thread
Leveraging Explainable Automated Machine Learning (AutoML) and Metabolomics for Robust Diagnosis and Pathophysiological Insights in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Yagin et al.
Article | Thread
Systematic literature review: treatment of postural orthostatic tachycardia syndrome (POTS) — Schiweck et al.
"The objective of this review is to present the current knowledge on non-pharmacological and pharmacological approaches in POTS with a special focus on POTS therapy in children and people with ME/CFS."
Article | Thread
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome — Nezamdoust and Ruel
"Our findings reveal that the experiences of severe ME/CFS extend beyond the devastating physical symptoms to encompass a broader landscape of emotional, social, and institutional hardship. The condition’s contested nature fundamentally shapes how individuals are treated and understood, resulting in a layered form of marginalization. Participants experience widespread disbelief, social exclusion, medical neglect, and disability rejection."
Article | Thread
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept — Hale et al.
"The term 'energy impairment' is a substitution for the term 'fatigue' that disrupts many of the impairment typologies used in UK social administration. We contend that current terminology not only fails to capture the embodied experience of, and language used by, people living with chronic illness, but it often actively denies this lived experience."
Article | Thread
Uncertainties of living with Chronic Fatigue Syndrome: barriers to treatment and its consequences — Gopika Surendran and Tony P Jose
"This study aims to explore the obstacles encountered during the treatment process, their effects on daily life, and the future concerns of individuals with CFS, analyzed through the lens of Miranda Fricker’s concept of epistemic injustice."
Article | Thread
Long Covid research
Evaluation of Interventions for Cognitive Symptoms in Long COVID: A Randomized Clinical Trial — David S. Knopman et al.
RECOVER-NEURO 5 arm, multi-centre study involving 328 participants. "The trial failed to demonstrate differential benefits from online cognitive training, a structured cognitive rehabilitation program, or transcranial direct current stimulation"
Article | Thread
Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial — Colin Berry et al.
"The mean (SD) change in Incremental Shuttle Walk Test distance at 3 months compared with baseline was 83 (118) m in the intervention group (n = 94) and 47 (95) m in the control group (n = 98)"
Article | Thread
Development and implementation of a digital health intervention in routine care for long COVID patients: a comprehensive synopsis — Goodfellow et al.
"Long COVID can be extremely debilitating, comparable to stage IV lung cancer or severe kidney disease in relation to fatigue and HRQoL." "Severity of symptoms is influenced by social disadvantage, underlining the need for continued targeted interventions."
Article | Thread
Long COVID Disproportionately Reported by Disadvantaged Individuals: A National Survey of U.S. Working-Age Adults — Villasis et al.
Article | Thread
Prevalence of depression, anxiety, fatigue, and headache before and after long COVID onset: a case–control study in the total population of Region Stockholm — Lindblom et al.
"Our findings clearly show that individuals with long COVID demonstrated a significantly higher frequency of depression and anxiety, as well as post-viral fatigue and headache, in comparison to matched controls before the COVID-19 pandemic in 2019, as well as 12 months before and 6 months after the long COVID diagnosis."
Article | Thread
Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID: Results from an intensive longitudinal cohort study — O'Connor et al.
"although the precise explanation is unclear, the limited effects of rumination compared to worry on symptom fluctuations in individuals living with Long COVID are likely, in part at least, to reflect the uncertain nature of the condition."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Part 2 of 2
Research
ME/CFS research
Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion — Arnaud Germain et al.
"To investigate the molecular basis of post-exertional malaise in ME/CFS, we performed longitudinal plasma proteomics in 132 individuals undergoing two maximal exercise tests. ME/CFS patients showed persistent immune, metabolic, and neuromuscular dysregulation during recovery, including suppression of T and B cell signaling and activation of glycolytic stress pathways. Protein changes were linked to symptom severity and reduced exercise capacity, with distinct sex-specific responses."
Article | Thread
Abnormal breathing patterns and hyperventilation are common in patients with chronic fatigue syndrome during exercise — Mancini et al.
"In the ME/CFS group, dysfunctional breathing was the most common ventilatory abnormality, followed by hyperventilation. The breathing patterns were mostly reproducible across consecutive studies. There was considerable overlap between DB and HV in the patients with ME/CFS, which was not observed in the sedentary controls."
Article | Thread
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Rohrhofer et al.
"our findings suggest that the prevalence of MCA increases with ME/CFS disease progression." "Limitations of our study include its reliance on self-reported data in the CCCFS patient cohort, the retrospective design of the ME/CFS-MCA patient cohort, and potential differences in MCAS diagnostic procedure."
Article | Thread
The Role of Nuclear and Mitochondrial DNA in Myalgic Encephalomyelitis: Molecular Insights into Susceptibility and Dysfunction — Elremaly et al.
Review. "We explore how nuclear and mitochondrial DNA influence disease risk, symptom manifestation, and cellular dysregulation, with particular focus on genetic variants, mitochondrial bioenergetics, epigenetic modifications, and transposable element activation."
Article | Thread
Muscle strength, muscle endurance, voluntary activation, and perception of effort in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an overview — James L. Nuzzo et al.
Review article.
Article | Thread
Leveraging Explainable Automated Machine Learning (AutoML) and Metabolomics for Robust Diagnosis and Pathophysiological Insights in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Yagin et al.
Article | Thread
Systematic literature review: treatment of postural orthostatic tachycardia syndrome (POTS) — Schiweck et al.
"The objective of this review is to present the current knowledge on non-pharmacological and pharmacological approaches in POTS with a special focus on POTS therapy in children and people with ME/CFS."
Article | Thread
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome — Nezamdoust and Ruel
"Our findings reveal that the experiences of severe ME/CFS extend beyond the devastating physical symptoms to encompass a broader landscape of emotional, social, and institutional hardship. The condition’s contested nature fundamentally shapes how individuals are treated and understood, resulting in a layered form of marginalization. Participants experience widespread disbelief, social exclusion, medical neglect, and disability rejection."
Article | Thread
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept — Hale et al.
"The term 'energy impairment' is a substitution for the term 'fatigue' that disrupts many of the impairment typologies used in UK social administration. We contend that current terminology not only fails to capture the embodied experience of, and language used by, people living with chronic illness, but it often actively denies this lived experience."
Article | Thread
Uncertainties of living with Chronic Fatigue Syndrome: barriers to treatment and its consequences — Gopika Surendran and Tony P Jose
"This study aims to explore the obstacles encountered during the treatment process, their effects on daily life, and the future concerns of individuals with CFS, analyzed through the lens of Miranda Fricker’s concept of epistemic injustice."
Article | Thread
Long Covid research
Evaluation of Interventions for Cognitive Symptoms in Long COVID: A Randomized Clinical Trial — David S. Knopman et al.
RECOVER-NEURO 5 arm, multi-centre study involving 328 participants. "The trial failed to demonstrate differential benefits from online cognitive training, a structured cognitive rehabilitation program, or transcranial direct current stimulation"
Article | Thread
Resistance Exercise Therapy After COVID-19 Infection: A Randomized Clinical Trial — Colin Berry et al.
"The mean (SD) change in Incremental Shuttle Walk Test distance at 3 months compared with baseline was 83 (118) m in the intervention group (n = 94) and 47 (95) m in the control group (n = 98)"
Article | Thread
Development and implementation of a digital health intervention in routine care for long COVID patients: a comprehensive synopsis — Goodfellow et al.
"Long COVID can be extremely debilitating, comparable to stage IV lung cancer or severe kidney disease in relation to fatigue and HRQoL." "Severity of symptoms is influenced by social disadvantage, underlining the need for continued targeted interventions."
Article | Thread
Long COVID Disproportionately Reported by Disadvantaged Individuals: A National Survey of U.S. Working-Age Adults — Villasis et al.
Article | Thread
Prevalence of depression, anxiety, fatigue, and headache before and after long COVID onset: a case–control study in the total population of Region Stockholm — Lindblom et al.
"Our findings clearly show that individuals with long COVID demonstrated a significantly higher frequency of depression and anxiety, as well as post-viral fatigue and headache, in comparison to matched controls before the COVID-19 pandemic in 2019, as well as 12 months before and 6 months after the long COVID diagnosis."
Article | Thread
Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID: Results from an intensive longitudinal cohort study — O'Connor et al.
"although the precise explanation is unclear, the limited effects of rumination compared to worry on symptom fluctuations in individuals living with Long COVID are likely, in part at least, to reflect the uncertain nature of the condition."
Article | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky