News in Brief - January 2026
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Week beginning 29th December 2025
Wishing all our readers a Happy New Year!
News, advocacy and articles
The Journal of the Norwegian Medical Association CFS/ME - from hysteria to biomedical illness
Opinion piece by Ola Didrik Saugstad, Donia Jamal Ramadan and Marte Kathrine Viken on recent hypotheses and findings from research into ME. The authors say that the public health system needs to take a much larger responsibility for this patient group and that patients must be met with knowledge and respect.
Article (Norwegian) - Thread
Trial by Error by David Tuller
Journal Published Confusing Section on "Enduring Symptoms"
"As part of its December issue, Future Healthcare Journal, sponsored by the UK’s Royal College of Physicians, has published a special section called “Challenging Myths: Debunking Functional Disorders.” The special section title itself creates confusion. In what way are functional disorders being “debunked”? I assume the idea is to debunk the purported “myths” about functional disorders, whatever they are—but that’s not what the words mean in this combination."
Article l Thread
My Unexpected E-Mail Exchange with Alem Matthees
Australian Alem Matthees, a key contributor to the debunking of the PACE trial and a very severe ME patient for many years, has shared with Tuller the welcome news of a slight improvement. He is able to do a bit of writing and wishes to eventually write articles about what he has experienced.
Article l Thread
UK LBC Treatment for ME has turned a corner - the UK must not leave patients waiting
"Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury. For too long, those living with [ME/CFS] have had to live with disbelief." Chowdhury highlights the DecodeME results and the need for further research funding. "Action for ME is calling for the creation of a Strategic Research Hub for ME, to ensure that recent scientific progress translates into meaningful treatments."
Article | Thread
Video essay On hope and chronic illness.
Jonathan, who has had ME/CFS since age 14, describes vividly his experiences with a series of damaging alternative and medical treatments, and the importance of getting a diagnosis after 6 years of misdiagnosis. He discusses the importance of hope, but, says: "I had no idea that the world of illness was so full of predators. They’d dispute that label, but they harm desperate people by offering false hope".
Video (16 minutes) | Article | Thread
Blog: The Red Tree and M.E. by Dr Jo Greer
"As an educational psychologist working with children in care in the UK, I often used therapeutic stories in my practice. I especially loved The Red Tree by Shaun Tan".
" Amidst the disconcertingly dark imagery in The Red Tree, the recurring motif of the red leaf offers peace and assurance as it speaks to hope."
Carer for her daughter with very severe ME, Dr Greer has developed her articles into an advocacy project described in this series of blog articles.
Article | Thread
Aotearoa New Zealand ANZMES Survey
Open to NZ members and non-members. "As we transition to a Charitable Trust and look toward the future, we want to ensure our goals align with the reality of what you expect."
Survey | Thread
........
Coming events
Bateman Horne Center – Free Online Support Group
Tuesday, January 6, 1:00 - 2:00 PM Mountain Time
Topic: To Be Announced
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
UK The ME Association will hold its Annual General Meeting (AGM) on 12 January 2026 at 2:00 pm. Members of the charity are invited to attend either in person at the Head Office or via an online video conference link.
Article | Thread
Solve ME Webinar – From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test
Discussion of the new blood-based assay, the EpiSwitch CFS test, and its potential impact on diagnosing and treating people with ME/CFS and Long Covid.
Thursday, January 15, 9 AM Pacific Time.
Announcement | Registration | Thread
Webinar: PRIME Workshop How AI/ML methods can enhance ME/CFS molecular or genetic biomarker discovery, Jan 21, 2026, 02:00 to 05:00 PM (GMT)
"The aim of this workshop is to present state-of-the-art quantitative methodologies that have been, or could be, applied in the context of ME/CFS and LC to motivate and empower researchers to take on and apply promising techniques in their own work in this area." Recording of the event will be made available afterwards.
Registration | Thread
........
Research news and commentary
Promising medicines for ME/CFS: call for drug repurposing. The Dutch funding agency ZonMw has issued a new call on drug repurposing or rediscovery for patients with ME/CFS. It aims to fund projects focused on clinical research into the effectiveness of an existing medicine (off-patent, available in the Netherlands) as a new application. The budget is € 3,5 million.
Article | Thread
2025: looking back on a year of ME/CFS research. ME/CFS Science Blog has published a review of the most interesting ME/CFS studies in 2025, including DecodeME, the daratumumab trial, autopsy findings from the Netherlands, and most extensive study on antibodies in ME/CFS to date.
Article | Thread
ME Research UK 2024/25 – Our Charity Year in Review
The review describes the work of MERUK under the headings Our Vision and Mission, Investing, Informing and Influencing.
Article | Thread
Journal of Family Medicine Letter to editor regarding the lightning process
Nina E. Steinkopf clarifies that a previously published article by Arroll et al. is not a clinical audit, but is research that has been undertaken and published without ethics approval. "I trust that you will ensure the correction of this error to uphold the integrity of your journal."
Letter | Thread
........
Research
ME/CFS research
Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome— Helena M. Huhmar et al.
"Our results reveal a high prevalence of low P-VP, low urine osmolality and high plasma osmolality after overnight water restriction." "The high incidence of low VP in our patient cohort suggests that chronic down-regulation of VP secretion may be an elementary part of pathophysiology of ME/CFS"
Article | Thread
Sustained illness burden over time among Australians with myalgic encephalomyelitis/chronic fatigue syndrome — Breanna Weigel et al.
"Importantly, no significant differences were observed in any measure of symptom presentation, overall perceptions of health status, QoL, functional capacity or fatigue impact over the 12-month study period." "the present study highlights that the profound impacts on the health and wellbeing of pwME/CFS are persistent and long-term." "Moreover, this study captured the lived experiences of pwME/CFS with established illness, as most participants had lived with a diagnosis of ME/CFS for at least one decade."
Article | Thread
Characterization of Post-Viral Infection Behaviors Among Patients With Long COVID: Prospective, Observational, Longitudinal Cohort Analyses of Fitbit Data and Patient-Reported Outcomes — Tianmai M Zhang
"Our finding that a lower [moderate-vigorous physical activity] level was associated with more improvements in outcomes in the long-term seems to suggest some benefit from reduced activity."
Article | Thread
Complex chronic adverse events following immunization: a systemic critique and reform proposal for vaccine pharmacovigilance — Tiff-Annie Kenny
"While the narrative arc, structure, and analysis are shaped by the author’s lived experience as an affected patient, the arguments are grounded in a synthesis of peer-reviewed literature, regulatory reviews, and case-based evidence." "This perspective has enabled the discussion of structural and epistemic limitations that warrant urgent attention."
Article | Thread
Supporting people with myalgic encephalomyelitis in primary care — Sonya Chowdhury
"ME is not rare, nor is it going away. People with ME need recognition, compassion and commitment from every corner of the healthcare system. For general practice nurses, this starts with listening, understanding the nature of the illness and supporting patients through the long journey of managing their symptoms."
Article | Thread
Long Covid research
Evidence of Accumulating Neurophysiologic Dysfunction in Persistent Post-COVID Fatigue — Maria Germann et al.
"we found evidence for autonomic dysfunction (decreased blood oxygen saturation, increased heart rate and decreased heart rate variability), increased peripheral muscle fatigue and a reduction in intracortical facilitation (ICF), a measure of intracortical glutamatergic function. There was also an increase in body weight, though notably it was mainly the percentage of muscle mass that appeared to increase."
Preprint | Thread
SARS-CoV-2 Infection Is Associated With an Increased Risk of Hospital-Treated Infectious Mononucleosis due to EBV: National Register-Based Cohort Study — Snieguole Vingeliene et al.
"In this national study, SARS‐CoV‐2 infection was notably associated with an increased risk for subsequent EBV‐IM." "A positive PCR test without hospital admission, which occurred in a larger number of individuals, was associated with a higher risk of subsequent EBV‐IM, compared with individuals who did not have a registered positive PCR test for SARS‐CoV‐2 infection."
Article | Thread
Beyond COVID-19 in people with HIV: Specific miRNA expression profile persist after SARS-CoV-2 clearance — Grande-García et al.
"our findings reveal a persistent alteration of circulating miRNAs in [people with HIV] following SARS-CoV-2 infection after 4 weeks, suggesting an epigenetic imprinting that may contribute to the development of post-COVID conditions."
Article | Thread
Autoantibodies in long COVID in a black/mixed population compared with recovered and pre-pandemic controls — de Jesus Silva et al.
"The lack of association between these autoantibody profiles and clinical manifestations of long COVID indicates that, if present, the contribution of autoantibodies to symptom persistence is likely modest."
Article | Thread
Understanding how social determinants of health shape Long COVID outcomes: a rapid review of evidence — Tamim El Jarkass et al.
"This review synthesizes evidence from 71 studies across multiple countries, providing one of the most comprehensive evaluations to date of the relationship between social determinants of health and Long COVID." "We found that individuals in frontline and public-facing roles appear to face an elevated risk, likely reflecting greater exposure to SARS-CoV-2 and subsequent susceptibility to persistent symptoms."
Article | Thread
Post-Covid-19 symptoms, subjective work ability and sick leave 2 years after acute infection—results from a population-based long COVID study — Braig et al.
"In our population-based cohort study, 1.1% of participants had been continuously on sick leave since the initial infection, while 3.7% experienced recurrent sick leave at 24 months."
Article | Thread
Post-translational modifications within fibrinaloid microclot complexes distinguish Pre-COVID-19 Postural Orthostatic Tachycardia Syndrome, Long COVID, and Long COVID-POTS and reveal disease-specific molecular pathways — Renata Madre Booyens et al.
"PTM profiling reveals distinct yet overlapping biochemical signatures invisible to standard blood tests" "Long COVID exhibits pro-coagulant fibrinogen modifications with metabolic dysregulation. PC-POTS and LC-POTS shows predominantly immune-oxidative disruptions"
Preprint | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky
Wishing all our readers a Happy New Year!News, advocacy and articles
The Journal of the Norwegian Medical Association CFS/ME - from hysteria to biomedical illness
Opinion piece by Ola Didrik Saugstad, Donia Jamal Ramadan and Marte Kathrine Viken on recent hypotheses and findings from research into ME. The authors say that the public health system needs to take a much larger responsibility for this patient group and that patients must be met with knowledge and respect.
Article (Norwegian) - Thread
Trial by Error by David Tuller
Journal Published Confusing Section on "Enduring Symptoms"
"As part of its December issue, Future Healthcare Journal, sponsored by the UK’s Royal College of Physicians, has published a special section called “Challenging Myths: Debunking Functional Disorders.” The special section title itself creates confusion. In what way are functional disorders being “debunked”? I assume the idea is to debunk the purported “myths” about functional disorders, whatever they are—but that’s not what the words mean in this combination."
Article l Thread
My Unexpected E-Mail Exchange with Alem Matthees
Australian Alem Matthees, a key contributor to the debunking of the PACE trial and a very severe ME patient for many years, has shared with Tuller the welcome news of a slight improvement. He is able to do a bit of writing and wishes to eventually write articles about what he has experienced.
Article l Thread
UK LBC Treatment for ME has turned a corner - the UK must not leave patients waiting
"Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury. For too long, those living with [ME/CFS] have had to live with disbelief." Chowdhury highlights the DecodeME results and the need for further research funding. "Action for ME is calling for the creation of a Strategic Research Hub for ME, to ensure that recent scientific progress translates into meaningful treatments."
Article | Thread
Video essay On hope and chronic illness.
Jonathan, who has had ME/CFS since age 14, describes vividly his experiences with a series of damaging alternative and medical treatments, and the importance of getting a diagnosis after 6 years of misdiagnosis. He discusses the importance of hope, but, says: "I had no idea that the world of illness was so full of predators. They’d dispute that label, but they harm desperate people by offering false hope".
Video (16 minutes) | Article | Thread
Blog: The Red Tree and M.E. by Dr Jo Greer
"As an educational psychologist working with children in care in the UK, I often used therapeutic stories in my practice. I especially loved The Red Tree by Shaun Tan".
" Amidst the disconcertingly dark imagery in The Red Tree, the recurring motif of the red leaf offers peace and assurance as it speaks to hope."
Carer for her daughter with very severe ME, Dr Greer has developed her articles into an advocacy project described in this series of blog articles.
Article | Thread
Aotearoa New Zealand ANZMES Survey
Open to NZ members and non-members. "As we transition to a Charitable Trust and look toward the future, we want to ensure our goals align with the reality of what you expect."
Survey | Thread
........
Coming events
Bateman Horne Center – Free Online Support Group
Tuesday, January 6, 1:00 - 2:00 PM Mountain Time
Topic: To Be Announced
Advance registration required, see thread for times in your time zone.
Event Calendar | Thread
UK The ME Association will hold its Annual General Meeting (AGM) on 12 January 2026 at 2:00 pm. Members of the charity are invited to attend either in person at the Head Office or via an online video conference link.
Article | Thread
Solve ME Webinar – From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test
Discussion of the new blood-based assay, the EpiSwitch CFS test, and its potential impact on diagnosing and treating people with ME/CFS and Long Covid.
Thursday, January 15, 9 AM Pacific Time.
Announcement | Registration | Thread
Webinar: PRIME Workshop How AI/ML methods can enhance ME/CFS molecular or genetic biomarker discovery, Jan 21, 2026, 02:00 to 05:00 PM (GMT)
"The aim of this workshop is to present state-of-the-art quantitative methodologies that have been, or could be, applied in the context of ME/CFS and LC to motivate and empower researchers to take on and apply promising techniques in their own work in this area." Recording of the event will be made available afterwards.
Registration | Thread
........
Research news and commentary
Promising medicines for ME/CFS: call for drug repurposing. The Dutch funding agency ZonMw has issued a new call on drug repurposing or rediscovery for patients with ME/CFS. It aims to fund projects focused on clinical research into the effectiveness of an existing medicine (off-patent, available in the Netherlands) as a new application. The budget is € 3,5 million.
Article | Thread
2025: looking back on a year of ME/CFS research. ME/CFS Science Blog has published a review of the most interesting ME/CFS studies in 2025, including DecodeME, the daratumumab trial, autopsy findings from the Netherlands, and most extensive study on antibodies in ME/CFS to date.
Article | Thread
ME Research UK 2024/25 – Our Charity Year in Review
The review describes the work of MERUK under the headings Our Vision and Mission, Investing, Informing and Influencing.
Article | Thread
Journal of Family Medicine Letter to editor regarding the lightning process
Nina E. Steinkopf clarifies that a previously published article by Arroll et al. is not a clinical audit, but is research that has been undertaken and published without ethics approval. "I trust that you will ensure the correction of this error to uphold the integrity of your journal."
Letter | Thread
........
Research
ME/CFS research
Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome— Helena M. Huhmar et al.
"Our results reveal a high prevalence of low P-VP, low urine osmolality and high plasma osmolality after overnight water restriction." "The high incidence of low VP in our patient cohort suggests that chronic down-regulation of VP secretion may be an elementary part of pathophysiology of ME/CFS"
Article | Thread
Sustained illness burden over time among Australians with myalgic encephalomyelitis/chronic fatigue syndrome — Breanna Weigel et al.
"Importantly, no significant differences were observed in any measure of symptom presentation, overall perceptions of health status, QoL, functional capacity or fatigue impact over the 12-month study period." "the present study highlights that the profound impacts on the health and wellbeing of pwME/CFS are persistent and long-term." "Moreover, this study captured the lived experiences of pwME/CFS with established illness, as most participants had lived with a diagnosis of ME/CFS for at least one decade."
Article | Thread
Characterization of Post-Viral Infection Behaviors Among Patients With Long COVID: Prospective, Observational, Longitudinal Cohort Analyses of Fitbit Data and Patient-Reported Outcomes — Tianmai M Zhang
"Our finding that a lower [moderate-vigorous physical activity] level was associated with more improvements in outcomes in the long-term seems to suggest some benefit from reduced activity."
Article | Thread
Complex chronic adverse events following immunization: a systemic critique and reform proposal for vaccine pharmacovigilance — Tiff-Annie Kenny
"While the narrative arc, structure, and analysis are shaped by the author’s lived experience as an affected patient, the arguments are grounded in a synthesis of peer-reviewed literature, regulatory reviews, and case-based evidence." "This perspective has enabled the discussion of structural and epistemic limitations that warrant urgent attention."
Article | Thread
Supporting people with myalgic encephalomyelitis in primary care — Sonya Chowdhury
"ME is not rare, nor is it going away. People with ME need recognition, compassion and commitment from every corner of the healthcare system. For general practice nurses, this starts with listening, understanding the nature of the illness and supporting patients through the long journey of managing their symptoms."
Article | Thread
Long Covid research
Evidence of Accumulating Neurophysiologic Dysfunction in Persistent Post-COVID Fatigue — Maria Germann et al.
"we found evidence for autonomic dysfunction (decreased blood oxygen saturation, increased heart rate and decreased heart rate variability), increased peripheral muscle fatigue and a reduction in intracortical facilitation (ICF), a measure of intracortical glutamatergic function. There was also an increase in body weight, though notably it was mainly the percentage of muscle mass that appeared to increase."
Preprint | Thread
SARS-CoV-2 Infection Is Associated With an Increased Risk of Hospital-Treated Infectious Mononucleosis due to EBV: National Register-Based Cohort Study — Snieguole Vingeliene et al.
"In this national study, SARS‐CoV‐2 infection was notably associated with an increased risk for subsequent EBV‐IM." "A positive PCR test without hospital admission, which occurred in a larger number of individuals, was associated with a higher risk of subsequent EBV‐IM, compared with individuals who did not have a registered positive PCR test for SARS‐CoV‐2 infection."
Article | Thread
Beyond COVID-19 in people with HIV: Specific miRNA expression profile persist after SARS-CoV-2 clearance — Grande-García et al.
"our findings reveal a persistent alteration of circulating miRNAs in [people with HIV] following SARS-CoV-2 infection after 4 weeks, suggesting an epigenetic imprinting that may contribute to the development of post-COVID conditions."
Article | Thread
Autoantibodies in long COVID in a black/mixed population compared with recovered and pre-pandemic controls — de Jesus Silva et al.
"The lack of association between these autoantibody profiles and clinical manifestations of long COVID indicates that, if present, the contribution of autoantibodies to symptom persistence is likely modest."
Article | Thread
Understanding how social determinants of health shape Long COVID outcomes: a rapid review of evidence — Tamim El Jarkass et al.
"This review synthesizes evidence from 71 studies across multiple countries, providing one of the most comprehensive evaluations to date of the relationship between social determinants of health and Long COVID." "We found that individuals in frontline and public-facing roles appear to face an elevated risk, likely reflecting greater exposure to SARS-CoV-2 and subsequent susceptibility to persistent symptoms."
Article | Thread
Post-Covid-19 symptoms, subjective work ability and sick leave 2 years after acute infection—results from a population-based long COVID study — Braig et al.
"In our population-based cohort study, 1.1% of participants had been continuously on sick leave since the initial infection, while 3.7% experienced recurrent sick leave at 24 months."
Article | Thread
Post-translational modifications within fibrinaloid microclot complexes distinguish Pre-COVID-19 Postural Orthostatic Tachycardia Syndrome, Long COVID, and Long COVID-POTS and reveal disease-specific molecular pathways — Renata Madre Booyens et al.
"PTM profiling reveals distinct yet overlapping biochemical signatures invisible to standard blood tests" "Long COVID exhibits pro-coagulant fibrinogen modifications with metabolic dysregulation. PC-POTS and LC-POTS shows predominantly immune-oxidative disruptions"
Preprint | Thread
...........
S4ME social media: Forum, Mastodon, Bluesky