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ME/CFS Science 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 Science Profile picture
Jan 12
1) ME/CFS patients often reported problems with their working memory. This review examined 34 studies that used cognitive tests to investigate this.

The effect was quite large for verbal working memory, while no clear effect was found for visual memory. Image
2) One of the most used tests is the Digit Span Backwards, where you have to remember and repeat a series of digits in reverse order (e.g., hearing "3-8-9" and saying "9-8-3").

Several studies showed a clear deficit in ME/CFS patients using this test. Image
3) Another common test is called the Paced Auditory Serial Addition Test (PASAT). It's quite similar: you are given a number every couple of seconds and are asked to add it to the one you heard before.

Here, there was also a consistent effect in ME/CFS compared to controls. Image
Read 5 tweets
ME/CFS Science Profile picture
Jan 6
1) This hypothesis paper argues that herpesviruses aren't either active (lytic replication) or passive (latency) but that there's a third state called 'abortive lytic replication' where the virus is active but doesn't replicate itself.

They suspect this plays a role in ME/CFS. Image
2) During this partially active state, the virus activates some genes and proteins but doesn't fully complete its replication. So there's no increase in viral load, which would explain why no such difference has been found between ME/CFS patients and controls.
3) One of the viral proteins these Ohio researchers focus on is deoxyuridine triphosphate nucleotidohydrolases (dUTPase), which is encoded by the early genes of Epstein-Barr and other herpesviruses.
Read 5 tweets
ME/CFS Science Profile picture
Jan 4
1) 🇨🇳 A Chinese study looked at the mycobiome, the fungi living in the human body, in 59 ME/CFS patients and 59 controls.

Patients had, for example, more Aspergillus and less Candida. Image
2) Overall, ME/CFS patients seemed to have less fungal diversity than controls, but because of heterogeneity (large variation within the ME/CFS group), some of the difference were not statistically significant.
3) Age also seems to play a role: reduced fungal richness was mainly observed in young and middle-aged ME/CFS patients while the elderly ME/CFS group unexpectedly exhibited increased alpha diversity.

(normally fungal diversity is decreased in elderly).
Read 6 tweets
ME/CFS Science Profile picture
Jan 3
1) 🇸🇪 A Swedish study of 111 ME/CFS patients found reduced levels of vasopressin, a hormone that regulates water retention.

Low vasopressin could lead to low blood volume and some of the orthostatic symptoms that ME/CFS patients report. Image
2) The authors looked into this as ME/CFS patients often suffer from polyuria, similar to diabetes patients.
They write: "Patients with ME/CFS often describe excessive thirst and high urine volumes, symptoms that are regularly dismissed if not specifically asked about."
3) They also measured the osmalility, the concentration of dissolved particles, after 10 hours of overnight fasting. In plasma it was abnormally high in 57% of patients, while in urine it was reduced in 66%.

This indicates too much water in the urine, too little in the blood.
Read 10 tweets
ME/CFS Science Profile picture
Dec 30, 2025
1) We’ve just published our review of the most interesting ME/CFS studies of 2025.

It feels like this year, we’ve made a significant step towards understanding the pathophysiology of ME/CFS.

A brief overview of the studies that caught our eye 👇 Image
2) The biggest piece of the puzzle comes from DecodeME and the genetics study by Mark Snyder’s team at Stanford.

Both pointed to the brain and neuronal communication as being key to ME/CFS pathology.
3) Maureen Hanson’s group published the most extensive study on antibodies in ME/CFS to date, but found null results. Same with Ronald Davis and Iwasaki's search for viruses and other pathogens.
Read 11 tweets
ME/CFS Science Profile picture
Dec 26, 2025
1) Elizabeth Worthey's group published their findings on rare gene mutations in ME/CFS patients. Unfortunately, the evidence seems a bit underwhelming.

Only 31 individuals were screened and it's unclear if the mutations found are truly pathogenic. Image
2) Take the mutations for the KCNJ18 gene which codes for a potassium channel. A 2016 study showed that mutations for this gene are "seldom pathogenic". This includes the Q407X mutation which Worthey et al. describe as "pathogenic: definitive".
pubmed.ncbi.nlm.nih.gov/25882930/
3) For the other mutations listed in the table, the patients were heterozygous so they had only this mutation only once. Most of the diseases associated with these mutations are recessive, meaning they require two faulty versions.
Read 6 tweets

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