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ME/CFS Skeptic Profile picture
@mecfsskeptic
Jun 27, 2019 • 7 tweets • 2 min read • Read on X
1) There’s a new interesting study out by a collaboration of ME/CFS patients and scientists.

They’ve sent Freedom of Information requests to 38 NHS specialist centers for ME/CFS and asked them about their information on harms by rehabilitative therapies such as GET or CBT.
2) The results are striking. Among the ME/CFS clinics surveyed, there was an almost universal absence of criteria for detecting harm, and no clinic reported any harm to have occurred in their patients, despite acknowledging that many dropped out of treatment.
3) No clinic reported telling patients explicitly that they could be worse after therapy than before. They only said that setbacks were possible (but temporary) or that the reported harms of GET are due to the treatment being wrongly executed.
4) So patients getting worse during treatment might think that their decline is due to something else.

The authors suggest this can result in a “misinformation loop”: the clinics say GET is safe, patients believe that and do not report harm, clinics think GET is really safe...
5) Or as the authors put it more eloquently: “if clinics presume that treatments are harmless, they will inevitably fail to record harms accurately.”

Another possibility is of course that patients do report harms but that clinics do not use or record this information.
6) The solution the authors propose is a national system for collecting information from patients who think they have been harmed by rehabilitative therapies such as GET, something similar to the Yellow Card Scheme for adverse effects arising from medical drugs or devices.
7) The study was published in The Journal of Health Psychology and can be found here: journals.sagepub.com/doi/abs/10.117…

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More from @mecfsskeptic

ME/CFS Skeptic Profile picture
Jun 19
1) Finally had a look at the new trial of Rapamycin, an FDA-approved drug that is used an immunosuppressant to prevent organ rejection.

86 ME/CFS patients were included in a pilot trial and received a low dose of rapamycin of 6 mg once per week. Image
2) How did the Simmaron Researchers came to Rapamycin?

They first found that ME/CFS subjects had elevated levels of the early autophagy protein ATG13 and that these were heavily phosphorylated.
3) The mammalian target of rapamycin (mTOR) is the upstream enzyme responsible for phosphorylating ATG13. So that might be where the problem lies.

Rapamycin is an inhibitor of mTor, therefore the drug might lead to less phosphorylated ATG13 (which this trial seems to confirm).
Read 10 tweets
ME/CFS Skeptic Profile picture
Jun 1
1) A new Norwegian study tested more than 6000 proteins in the serum using aptamers (small pieces of DNA or RNA that can bind with specific targets such as proteins).

751 proteins showed a significant difference between ME/CFS patients and controls. Image
2) This aptamer method has been tried before in two ME/CFS studies but these had small sample size of 20 patients or less.

This Norwegian study had 54 ME/CFS patients who were recruited from the Rituximab and Cyclophosphamide trials.
3) One of the notable findings is a decrease of intracellular proteins released from skeletal muscle to the blood.

This may reflect lower activity and muscle mass in ME/CFS patients but the authors think it would also fit with impaired tissue perfusion.
Read 10 tweets
ME/CFS Skeptic Profile picture
May 28
1) A fascinating new hypothesis on ME/CFS by prof. Emeritus Jonathan Edwards and colleagues.

Well worth a read as it provides some fundamental thinking about what we know about ME/CFS and what might explain the syndrome. Image
2) Age profile: Edwards et al. note that the incidence of ME/CFS rises steeply in teenage years. Onset rarely occurs under the age of 10.

This steep early rise reminds them of seronegative spondyloarthropathies (likely T cell-mediated) and systemic lupus (autoantibody-mediated).
3) There is evidence for a second age peak in the late thirties (close to the peak for multiple sclerosis) but the implications are unclear.

Incidence of ME/CFS doesn't continue to grow into old age so it's probably no life-long accumulation of stochastic immunological events.
Read 11 tweets
ME/CFS Skeptic Profile picture
May 25
1) This new paper by Van Campen & Visser shows an impressive separation between two groups of ME/CFS patients with POTS. Image
2) Cardiac output and cerebral blood flow (CBF) were measured using doppler flow velocity during a tilt test.

The biggest group (2/3rds of patients) had moderate heart rate increases but showed a strong relation between CBF reduction and the reduction in cardiac output.
3) The relationship between CBF and cardiac output was stronger than in healthy controls. The authors argue that this might point to endothelial dysfunction and an inability
of cerebral vessels to adequately dilate when there is a reduction in cardiac output.
Read 7 tweets
ME/CFS Skeptic Profile picture
May 7
1) One of the most interesting ME/CFS studies of 2025 this far, from the research teams of Hanson (Cornell) and Snyder (Stanford). 👇

A neural network on rare genetic variants, found 115 ME/CFS risk genes. Image
2) The authors used 3 cohorts in this study: one from Stanford, one from the UK ME/CFS biobank (CureME) and one from Cornell.

The first two were used as discovery cohort (247 ME/CFS cases, 192 controls), the latter as testing cohort (36 cases, 21 controls).
3) This sample size is still small for a genetics study, so the authors used a different approach. Firstly, they looked at rare genetic variants that are more likely to lead to a loss of function.
Read 13 tweets
ME/CFS Skeptic Profile picture
Apr 30
1) Another interesting study Gemma Samms and Chris Ponting.

They looked closely at data on ME/CFS in the UK biobank and found that some of these may not be very reliable. Image
2) Take for example self-reported diagnoses. Participants to the biobank could report serious illnesses in a verbal interview with ‘chronic fatigue syndrome’ as one of the recorded options.
3) 2,312 (0.46% of the ca. 0.5 million biobank participants) self-reported a clinical diagnosis of CFS. But of these, 28% also reported 'good' or 'excellent' overall health when they first volunteered their CFS diagnosis. This seems like a contradiction.
Read 10 tweets

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