Image of Bluesky account of ME/CFS Science
Changed our handle to mecfsscience.org, which is the domain name for our website.
(previous handle was mecfsskeptic.bsky.social)
But as Simon said there's no reason to think that the 68% is due to some special placebo effect. It might largely be due to the natural course of the illness, regression to the mean, and response bias.
Thanks but I think in this case the image doesn't add much info that isn't already in the summary thread.
10) Link to the paper:
Fricke et al. 2026. ACHTSAM study protocol: outreach diagnostics and assessment of tolerability in severe ME/CFS -a pilot study.
9) A staged assessment protocol with rest periods and the option to pause/terminate procedures is used to minimise the risk of PEM during data collection.
The goal is to determine which procedures and measurements work in severe ME/CFS to inform future studies
8 ) The study is called ACHTSAM and takes place at the university of Freiburg. Recruitment began in September 2025 and is expected to be completed by the end of April 2026.
It's not clear to me if they will do all tests on each participant or only a subgroup of them.
7) Subjective perceived exertion is assessed after each procedure, allowing systematic characterisation of individual tolerability limits to inform future study protocols.
The study will also check if tests in supine position are better tolerated than seated/standing tests.
6)
- Near-infrared spectroscopy of muscle tissue (to check oxygenation and blood flow)
- Handgrip strength
- Standing test for orthostatic intolerance
- Assessment of endothelial function
5)
- LightMove 4 Activity Sensor (tracks sleep quality, physical activity, sunlight exposure, etc.)
- Diaphragm ultrasound
- Assessment of body composition
- Blood samples
- Saliva samples
4) The full lists of measurements that they plan to test:
- Resting electrocardiogram (ECG)
- Heart rate variability (HRV)
- Pupillography (gives an indication of daytime sleepiness)
- Cognitive assessments of attention and memory
- Osteosonography (bone mineral density)
3) They also note that home-based testing could lead to more reliable measurements: "Home-based assessments may reduce noise from clinic-induced stress, providing more ecologically valid data."
2) The authors argue that this is urgently needed because these patients are often excluded from research:
"A central limitation of the current body of research is the insufficient inclusion of patients with severe and very severe ME/CFS into clinical studies."
1) 🇩🇪 This German study will test the feasibility of home-based diagnostics in patients with severe and very severe ME/CFS (Bell score < 30).
They plan to take blood and saliva samples, questionnaires and measurements such as ECG, ultrasound, pupillary responses, HRV, etc.
8 ) Link to the paper (open-access):
Lim et al. Neither Metformin nor Ursodeoxycholic Acid Effectively Treats Postacute Sequelae of COVID19: A Randomized Clinical Trial.
www.acpjournals.org/...
7) In our view, however, the differences in cytokine levels look rather modest (see image below).
Regarding the high recovery rates, the authors argue that this might be due to their cohort being mostly young adults with mild Long Covid.
6) Although there was no difference in cytokines between groups, the study found correlations between changes in cytokine levels and improvements in symptoms. According to the authors this "strongly support the role of immune dysregulation in the pathophysiology of long COVID."
5) Not sure if that's a good definition of recovery though (patients could improve with only 1 point, from 12 to 11 and be recovered?). It might therefore be more useful to look at the change in mean PASC score.
These clearly show that all 3 groups improved similarly.
4) The main outcome was a questionnaire called the PASC index. The authors defined recovery as a PASC score improved from 12 or higher to less than 12.
They expected a recovery rate around 15% but even in the placebo group it was 68%.
3) This was quite a large trial with 396 patients (132 in each treatment group) recruited from two tertiary hospitals. Patients were screened 180 to 730 days after their infection which was confirmed by PCR or antigen testing.
2) Both drugs are suspected to have immunomodulatory and antiviral effect. Studies also showed that taking metformin during the acute phase of COVID-19 can reduce the risk of long COVID.
1) 🇰🇷 A study from South-Korea shows that Metformin (the diabetes drug) and Ursodeoxycholic Acid (a bile acid) are not effective in Long Covid.
Most patients improved at lot, even those in the placebo group.
This paper by Karl Tronstad was published in the journal Cell Reports Medicine.
We made summary about it below 👇
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.
Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
7) Link to the paper:
Tack et al. Assessment and Incidence Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Following a SARS-CoV-2 Infection in a Prospective Cohort of Hospital Employees.
www.mdpi.com/1648-91...
6) They also only examined HEs who reported fatigue which might have missed some ME/CFS cases for whom this is not the most prominent symptom.
Orthostatic testing showed that 4 patients had orthostatic hypotension and 1 had POTS.
5) 7 met the ME/CFS criteria, which is 3.2% of the total group of 221 HEs. But the authors admit this is likely an underestimate because some of the patients who dropped out or could not be contacted might have ME/CFS as well.
4) The new study focused on the remaining 19 HEs and called these the HALE cohort. They did a comprehensive medical workup to check if these patients meet the Canadian Criteria for ME/CFS, including blood sampling and physical examination to check for alternative causes.
3) The study followed up on 48 out of 221 HEs who were SARS-CoV-2 positive between March 2020 and May 2021 and reported persistent fatigue.
They invited these 48 for further assessment. 16 no longer had fatigue, 7 didn't want to participate and 6 could not be contacted.
2) The authors conclude: "This study emphasizes the need for infection prevention measures
to protect HEs (hospital employees) from nosocomial post-COVID-19 ME/CFS."
