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Sten Helmfrid @stenhelmfrid.bsky.social · 16/07/2025

#MECFS is a severely debilitating illness that leaves about 25% of the patients housebound. Did you know that the illness does not only affect the lives of the patients, but that the quality of life of partners and other family members also is severely impaired? #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 15/07/2025

@paulgarnerwoof.bsky.social argues that his case (n=1) shows that positive thinking and exercise will cure #MECFS. Here are some more comprehensive statistics from a recent survey. Graded exercise therapy (GET) is the worst intervention by far (n=299), and pacing is the best (n=803).

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Sten Helmfrid @stenhelmfrid.bsky.social · 09/07/2025

Beentjes et al., comparison of traits for people with #MECFS and controls in UK Biobank data. Hundreds of traits differed between cases and controls, but single traits couldn’t distinguish case from control. The results cannot be explained by inactivity. www.embopress.org/doi/full/10....

embopress.org

Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity | EMBO Molecular Medicine

imageimageThere are no cellular or molecular biomarkers diagnostic of myalgic encephalomyelitis (also known as chronic fatigue syndrome [ME/CFS]). We find hundreds of blood-based traits are different,...

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Sten Helmfrid @stenhelmfrid.bsky.social · 09/07/2025

Fluge et al., pilot study on subcutaneous anti-CD38 antibody daratumumab in moderate to severe #MECFS. For six responders of ten patients, mean SF-36 PF increased from 32.2 to 78.3. Low NK-cell count was significantly associated with lack of response. www.frontiersin.org/journals/med...

frontiersin.org

Frontiers | Plasma cell targeting with the anti-CD38 antibody daratumumab in myalgic encephalomyelitis/chronic fatigue syndrome—a clinical pilot study

BackgroundMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) entails low quality of life for patients and massive societal costs. There is an urgent...

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Sten Helmfrid @stenhelmfrid.bsky.social · 28/05/2025

Dr. David Tuller. Chronic Denial: “The psychosomatic interpretation of Long Covid recycles a discredited framework, one that has repeatedly failed patients with #MECFS.” www.openmindmag.org/articles/goi...

openmindmag.org

Chronic Denial

A debunked theory about chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results.

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Sten Helmfrid @stenhelmfrid.bsky.social · 02/05/2025

Documentary: Five medical doctors open up about living with infection-associated chronic conditions: “They reflect on how becoming patients themselves radically changed their views on medicine, science, and what needs to change in healthcare.” #MECFS www.youtube.com/watch?v=J0yw...

youtube.com

Doctors as Patients (with subtitles)

YouTube video by Anil about ME

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Sten Helmfrid @stenhelmfrid.bsky.social · 30/04/2025

People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 23/04/2025

#MECFS is a debilitating, neurological illness. Severe cases are like torture around the clock: pain, malaise, insomnia, sensitivity to sound, touch, and light. Some believe it’s just fatigue, but that doesn't even come close to describing the reality of ME/CFS. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 20/04/2025

From the Workshop on Postviral Ethics, 3 February 2025, organized by the Radboud Center for Philosophy and Society (RCPS) and Post-COVID Network Netherlands (PCNN). Quote by Prof. Dr. Georg Schomerus, University of Leipzig. #MECFS www.ru.nl/en/about-us/...

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Sten Helmfrid @stenhelmfrid.bsky.social · 09/04/2025

ME/CFS is a severe, neurological illness that imprisons affected people in their own bodies. Severely ill people are in constant pain, must rest in a dark and soundproof room due to sensory sensitivity, and are confined to bed nearly around the clock. #MECFS #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 04/04/2025

The authors of the infamous #PACEtrial for #MECFS have argued that the graded exercise they promote does not use fixed increments. Vink et al.: “Our analysis of […] the PACE trial’s GET manual for therapists exposes the fixed incremental nature of GET.” www.mdpi.com/2075-1729/15...

mdpi.com

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Sten Helmfrid @stenhelmfrid.bsky.social · 02/04/2025

Several studies show that #MECFS is one of the most debilitating chronic illnesses. Many patients have symptoms around the clock and have lost many of the things that really matter: social network, career, leisure activities etc. Your support may mean the world. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 20/03/2025

ME/CFS is not being able to fulfil your dreams. ME/CFS is pain. ME/CFS is social isolation. ME/CFS is never feeling refreshed in the morning. ME/CFS is economic disaster. ME/CFS affects tens of millions. ME/CFS should be a priority. Why is it not? #MECFS #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 13/03/2025

Imagine if all the energy that #MECFS deniers have spent belittling patients and trying to invent new euphemisms for hypochondria were used to support patients and study the illness. There may still be no cure, but we would have come a long way! #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 12/03/2025

“Reify” seems to be a buzzword among proponents of biopsychosocial view of #MECFS: “Diagnostic criteria don’t reify illness”. I would like to point out that miraculous recovery stories to provide “hope” don’t reify evidence-based treatments that lead to objective improvement.

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Sten Helmfrid @stenhelmfrid.bsky.social · 03/03/2025

Riksförbundet för ME-patienter har tillsammans med sju verksamma kliniker och forskare skrivit en replik på ett mycket problematiskt inlägg av Jörgen Malmquist och Lars Englund i AllmänMedicin om vården av personer med ME/CFS. #SvMECFS allmanmedicin.sfam.se/p/allmanmedi...

allmanmedicin.sfam.se

AllmänMedicin

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Sten Helmfrid @stenhelmfrid.bsky.social · 22/02/2025

Trial by Error: Researchers and clinicians write to Cochrane about the exercise review on #MECFS: “The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria.” virology.ws/2025/02/20/t...

virology.ws

Trial By Error: A Letter to Cochrane's Editor-in-Chief | Virology Blog

By David Tuller, DrPH This morning, I e-mailed the following letter to Dr Karla Soares-Weiser, Cochrane’s editor-in-chief, about the decision to abandon a p ...

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Sten Helmfrid @stenhelmfrid.bsky.social · 12/02/2025

ME/CFS is a severely disabling neurological disease. It has been largely ignored by the medical community, despite the large scale of the problem. Pre-covid estimates suggest 50–60 million people affected worldwide—more than the entire population of Canada. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 05/02/2025

People with #MECFS suffer from post-exertional malaise, a general exacerbation of symptoms after physical or mental activity. Did you know that cells from #pwME that are stressed with saline water show a delayed response that is different from healthy controls? #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 22/01/2025

#MECFS is a severe illness that affects tens of millions of people. To date, there is no cure and no understanding of the pathology. This challenge can be solved, if we put our minds to it and provide funding for research. In the meantime, patients need support. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 08/01/2025

The criticism against the studies on CBT and exercise for patients with #MECFS has often been dismissed as an expression of anti-psychiatric sentiment. Did you know that many psychologists openly have rejected these trials and the psychologization of #pwME? #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 25/12/2024

Merry Christmas and a Happy New Year! Many people are isolated during the holidays due to chronic illness. #MECFS is one of the most disabling illnesses; 25% of the patients are either bedbound or homebound. Make a new year resolution to treat them with respect! #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 21/12/2024

Today, December 21st, is Saint Thomas’s day. In Swedish folklore, it was the day when Christmas peace was announced. Today will be the shortest day of the year in the northern hemisphere. Merry Christmas and a Happy New Year! Tomorrow will be brighter!

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Sten Helmfrid @stenhelmfrid.bsky.social · 18/12/2024

#MECFS is a chronic, multi-system illness. Even though ME/CFS is severely disabling, many patients are dismissed by GPs. Did you know that the scientific basis has been reviewed by several expert committees, which all underline the serious nature of the illness? #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 18/12/2024

Cochrane about the 2019 exercise review for #MECFS: ”We acknowledge that the publication of this amended review will not resolve all the ongoing questions about this globally important health topic.” Please sign this petition to retract the review! www.change.org/p/cochrane-w...

change.org

Sign the Petition

Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

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Sten Helmfrid @stenhelmfrid.bsky.social · 18/12/2024

Trial by Error on the cancelled Cochrane review: “After jerking everyone around and promising for five years to conduct a new review of exercise interventions for the illness, the organization abruptly abandoned that commitment this week.” #MECFS virology.ws/2024/12/17/t...

virology.ws

Trial By Error: Cochrane Tells ME/CFS Patients to Go F--k Themselves | Virology Blog

By David Tuller, DrPH Cochrane has just given the finger to the international ME/CFS community. After jerking everyone around and promising for five years t ...

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Sten Helmfrid @stenhelmfrid.bsky.social · 18/12/2024

Dr. Charles Shepherd, honorary medical adviser to the ME Association, talks about #MECFS and his personal experience with the illness. www.self.com/story/what-i...

self.com

What to Know About ME/CFS, a Complex Condition That Involves Crushing Fatigue and So Much More

Above all, it’s important that you don’t push through your symptoms.

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Sten Helmfrid @stenhelmfrid.bsky.social · 16/12/2024

Cochrane has decided not to update the report “Exercise therapy for chronic fatigue syndrome” due to insufficient new research in the field and a lack of resources to oversee this work. They have been dragging their feet for five years now, and this is it? 🙄 #MECFS www.cochrane.org/news/update-...

cochrane.org

Update on ‘Exercise therapy for chronic fatigue syndrome’

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Sten Helmfrid @stenhelmfrid.bsky.social · 12/12/2024

The #MEAction Network UK: “Today The Times and The Sunday Times reported on the SNP's pledge of £4.5 million, the first ever funding specifically for ME, and acknowledged our long campaign for ME to be recognised and treated in Scotland.” www.facebook.com/MEActNetUK/p...

facebook.com

Redirecting...

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Sten Helmfrid @stenhelmfrid.bsky.social · 11/12/2024

Did you know that #MECFS is a severely debilitating illness that has been chronically underfunded in research? There are about 108,000 scientific papers on Alzheimer’s disease, 76,000 on Parkinson’s disease, 65,000 on multiple sclerosis, but only 6,000 on ME/CFS. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 04/12/2024

Some critics have cartooned #MECFS as alternate science. Did you know that there have been more than 6,000 papers on ME/CFS published in peer reviewed journals and that one current and one previous member of the OMF Scientific Advisory Board are Nobel laureates? #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 30/11/2024

Professor Brian Hughes slams a flawed review on #longcovid therapies: “First thing to say is that with systematic reviews […] there is always one fundamental rule: namely, Garbage In = Garbage Out.” Always a pleasure to read his analyses! thesciencebit.net/2024/11/28/t...

thesciencebit.net

That BMJ review of Long Covid therapies does not show what it says it does

The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...

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Sten Helmfrid @stenhelmfrid.bsky.social · 27/11/2024

#MECFS is a severe, chronic illness that dramatically limits the lives of those affected. It is not just “unexplained fatigue”. This paper, for example, shows that old age, BMI, smoking, and alcohol intake predict fatigue but not ME/CFS. #MEAwarenessHour www.nature.com/articles/s41...

nature.com

Different risk factors distinguish myalgic encephalomyelitis/chronic fatigue syndrome from severe fatigue - Scientific Reports

Scientific Reports - Different risk factors distinguish myalgic encephalomyelitis/chronic fatigue syndrome from severe fatigue

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Sten Helmfrid @stenhelmfrid.bsky.social · 23/11/2024

This would be a more honest way to market the #LightningProcess for #MECFS!

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Sten Helmfrid @stenhelmfrid.bsky.social · 22/11/2024

Quote from Dr. David Putrino. #MECFS HT: MillionsMissing Stavanger on Facebook

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Sten Helmfrid @stenhelmfrid.bsky.social · 20/11/2024

#MECFS is not “medically unexplained fatigue”. It is a severely disabling, chronic illness characterized by post-exertional malaise, sleep reversals, fatigue not alleviated by rest, cognitive dysfunction, orthostatic intolerance, and a plethora of other symptoms. #MEAwarenessHour

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Sten Helmfrid @stenhelmfrid.bsky.social · 15/11/2024

A study of income and sick benefits for people with a diagnosis of G93.3 #MECFS confirms the chronicity of the illness. Patients started to lose income three years prior to the diagnosis and remained at a low level for the remaining 9 years of the study. www.sciencedirect.com/science/arti...

sciencedirect.com

What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?

Prognoses for persons affected by myalgic encephalomyelitis (ME) are rarely studied systematically. Existing studies are often based on smaller sample…

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