31 Fukuda patients is pretty thin indeed

What's New in ME/CFS? Interview with Dr. Avik Roy & Dr. Gunnar Gottschalk (Simmaron Research) YouTube video by SolveME

@solveme.bsky.social Video: Dr. Avik Roy (Simmaron Research) reports ME/CFS immune cells show impaired energy production, with both oxidative phosphorylation and glycolysis diminished. He and Dr. Gottschalk discuss targeted clinical trial research. youtu.be/OMmjcTKxivU

1) Re-reading some ME/CFS history: in the late 1990s the CDC diverted millions of dollars budgeted for
ME/CFS into work on other diseases.

The CDC presented misleading data to Congress, a whistleblower was needed to uncover the misuse of funds.

David Tuller is a journalist/researcher who has written a lot of valuable analyses on the PACE trial and psychosomatic approaches to ME/CFS and Long Covid.

He has, for example, pointed various flaws in research on exercise and CBT.

You can support his work here 👇

A surprised doctor Headline: Doctors Surprised By Unexpected Correlation Between Being Diagnosed And Being Unwell Story by Gordon Murmur and Sarah Ndipite Photo from Adobe

Doctors Surprised By Unexpected Correlation Between Being Diagnosed And Being Unwell

There are big problems with this one. For example they use a model that thinks severe LC passes within 2 years and only causes 18% to loose their jobs. It’s a wild underestimation imo.

Reading the new OECD report on Long COVID as a clinician is a sobering experience. According to the model, most cases are mild, the average duration is two years, and prevalence will fall to around 1% in the coming decade. In daily practice, this does not reflect what many of us see. A substantial subgroup of patients remains significantly impaired well beyond the first months. Many fulfil criteria of ME/CFS, with post-exertional malaise, cognitive dysfunction and limited recovery over time. We need models that reflect heterogeneity, not just central estimates. Otherwise, we risk designing systems that work on paper, but fail the patients who need them most.

Reading the new OECD report on Long COVID as a clinician is a sobering experience.

www.oecd.org/content/dam/...

Trial By Error: Final (Berkeley) Chapter 2026 Help UC Berkeley raise $75,000 for the project: Trial By Error: Final (Berkeley) Chapter 2026. Your gift will make a difference!

About to reach 20% of the goal:
crowdfund.berkeley.edu/project/49720

Eine neue Beobachtungsstudie der Charité Berlin zur Immunadsorption bei #MECFS.

Untersucht wird unter anderem, ob Patienten mit bestimmten Autoantikörpern profitieren und ob sich Verbesserungen anhand von veränderten Gedächtnis-B-Zellen voraussagen lassen.

clinicaltrials.gov/study/NCT075...

ME/CFS onset had two peaks, which may be a clue to causes A new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, arou…

Blog about the recent study finding evidence across Europe for ME/CFS peaking at two different ages, a v unusual feature. The peak ages of 1about 6 and late 30s is a unique combo even among diseases with two, and could be a clue to the biology of ME/CFS.

mecfsresearchreview.me/2026/04/15/m...

Bild 1/4 zeigt die DGPPN-Webseite mit einer Pressemitteilung vom 14.04.2026 zum neuen Positionspapier über das Post-COVID-Syndrom.

Die Bilder 2 bis 4 zeigen Seiten einer Stellungnahme des Psychotherapie-Netzwerks ME/CFS zum Positionspapier von DGPPN und DGPM. Darin werden einzelne Klarstellungen des Papiers benannt, zugleich aber problematische Grenzverwischungen kritisiert, insbesondere Psychotherapie ohne psychische Komorbidität zur Verbesserung von Fatigue, problematische Deutungen von PEM und die Gefahr von Aktivierungs-, Reha- und Fehlversorgungslogiken. Die letzte Seite betont Psychotherapie als begleitende Unterstützung, nicht als kurative Behandlung der somatischen Grunderkrankung, und nennt Bettina Grande als Verantwortliche.

Die Bilder 2 bis 4 zeigen Seiten einer Stellungnahme des Psychotherapie-Netzwerks ME/CFS zum Positionspapier von DGPPN und DGPM. Darin werden einzelne Klarstellungen des Papiers benannt, zugleich aber problematische Grenzverwischungen kritisiert, insbesondere Psychotherapie ohne psychische Komorbidität zur Verbesserung von Fatigue, problematische Deutungen von PEM und die Gefahr von Aktivierungs-, Reha- und Fehlversorgungslogiken. Die letzte Seite betont Psychotherapie als begleitende Unterstützung, nicht als kurative Behandlung der somatischen Grunderkrankung, und nennt Bettina Grande als Verantwortliche.

Die Bilder 2 bis 4 zeigen Seiten einer Stellungnahme des Psychotherapie-Netzwerks ME/CFS zum Positionspapier von DGPPN und DGPM. Darin werden einzelne Klarstellungen des Papiers benannt, zugleich aber problematische Grenzverwischungen kritisiert, insbesondere Psychotherapie ohne psychische Komorbidität zur Verbesserung von Fatigue, problematische Deutungen von PEM und die Gefahr von Aktivierungs-, Reha- und Fehlversorgungslogiken. Die letzte Seite betont Psychotherapie als begleitende Unterstützung, nicht als kurative Behandlung der somatischen Grunderkrankung, und nennt Bettina Grande als Verantwortliche.

Das Psychotherapie-Netzwerk ME/CFS
hat eine Stellungnahme zum DGPPN-/DGPM-Positionspapier zu #PostCOVID veröffentlicht:

wichtige Klarstellungen,
aber problematische Grenzverwischungen
mit Folgen für Forschung, Versorgung und
Patientensicherheit.
#MECFS #PEM #NoGET

drive.google.com/file/d/1UlBt...

@mecfsscience.org I really think you should delete or at least alter this post at this point.

Do not EVER go to “CFS expert” Dr. Benjamin Natelson. My story TLDR: despite being a “researcher” of ME he believes ME/CFS should be treated with psychiatric help + exercise. Told me I didn’t need to go...

Author dodgy af too.

old.reddit.com/r/cfs/commen...

32 out of 80 patients dropped out and they had to commit the preprint multiple times. Something’s fishy here

32 out of 80 patients dropped out and they had to commit the preprint multiple times. Something’s fishy

Wow yeah, 32 of eighty people dropped out and it was committed multiple times before finding a publisher, this smells like bs

Okay Todd Davenport just commented on it and called out the high I commented dropout from conception of the study and said he saw other glaring mistakes just in the abstract. I’d say the jury is still out. Waiting to hear more from him and others about the full data.

Okay Todd Davenport just commented on it and called out the high I commented dropout from conception of the study and said he saw other glaring mistakes just in the abstract. I’d say the jury is still out. Waiting to hear more from him and others about the full data.

Ah it's this account again, happily gloating over any failed trial while equally happily reposting unsubstantiated pseudo science about recovery. F off

Do we know how they defined that cohort? It’s always the first thing I look for and wasn’t disclosed in the abstract. Maybe it’s one of those: chronic fatigue= ME/CFS kind of deals.

This is figure 1, which shows Long COVID Disease Burden vs. Other Conditions, by Sex Predominance.

A study in Communications Medicine finds that Long COVID’s disability burden rivals that of Alzheimer’s and asthma in the US, but Long COVID receives 14% of its years lived with disability-proportionate funding from the National Institutes of Health. go.nature.com/4v23Nzv #medsky 🧪

Thinking severe Long Covid will only drop 18% out of a job and that they will be okay again after two years is just factually incorrect tbh.

1) On 11 May, Katharine Cheston will discusses Action for ME's 2025 Big Survey, the scandal around the treatment of people with ME, and its wider implications in terms of affective injustice in healthcare.

Event organised at Durham University.

1) 🇩🇪 The university hospital of Regensburg looked at the effect of general analgesia in 15 ME/CFS patients and matched controls.

No severe hypotension or perioperative adverse events were found although ME/CFS patients had a higher increase in pain afterwards.

Two Long COVID short films premiere at the Easterseals Disability Film Challenge - The Sick Times The 13th annual Easterseals Disability Film Challenge features two new short films about Long COVID. For the competition, filmmaking teams were tasked with creating a one to five minute film to promot...

And also today @thesicktimes.org: @heatherhogan.bsky.social describes two new short films about Long COVID, produced as part of the 2026 Easterseals Disability Film Challenge!
thesicktimes.org/2026/04/07/t...

1) 🇨🇦 This study tested near-infrared light therapy in 43 Long Covid patients. The primary outcome was a collection of cognitive tests. Although the intervention group did slightly better, the difference was not statistically significant.

A brief summary.

Great work! Now how do we make its implementation mandatory? 👏

BBC Audio | The Today Podcast | Over-Diagnosis: Are Too Many People Being Given Medical Labels? (Dr Suzanne O’Sullivan) The doctor who thinks that we are getting diagnosis wrong.

Suzanne O‘Sullivan on #LongCovid from about 11 min from the end.

My BJGP article is quoted - predictable response from her: ‚oh but Paul Garner‘, and no comeback from the journalist.

There is an email address to write to.

Link to my article below.

www.bbc.com/audio/play/m...

1) 🇦🇹 A Post-COVID Rehabilitation clinic in Vienna found that 15 out of 216 (7%) Long Covid patients met the Canadian criteria for ME/CFS.

ME/CFS patients were younger, more often female, more fatigued and had a worse trajectory than those without ME/CFS.

1) 🇧🇪 A new ME/CFS study in Belgium, funded by ME Research UK (MERUK) and the Gordon Parish Charitable Trust.

It will explore whether the immune system in people with ME/CFS is exhausted by prolonged activation.