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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
Dec 26
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
ME/CFS Science Profile picture
Dec 24
1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening."

She gives examples of patients who do not get appropriate care. Image
2) One patient had been ill for 3 decades and "had all her teeth removed as the severity of her illness meant that she had been unable to care for them."

"Multiple interviewees spoke of their distress at only being able to take a shower once every couple of months."
3) Another interviewee said "that all she’d eaten the previous day was a bowl of cereal; without family help or a social care package, this was all she had been able to prepare for herself."
Read 9 tweets
ME/CFS Science Profile picture
Dec 20
1) New blog post: NIH funding for ME/CFS keeps falling.

Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects. Image
2) Even if we include funding for Ian Lipkin’s team at Columbia University (which did not appear in the database), the funding still decreased by 7% to $ 9.4 million.
3) Five ME/CFS projects are planned to end in 2026, hinting that the decline will likely continue next year. The influx of new grants is currently too low to reverse the downward trend.
Read 10 tweets
ME/CFS Science Profile picture
Dec 19
1) 🇦🇺 This new study tested the kynurenine pathway in the plasma of 61 ME/CFS patients and 61 controls.

There were no differences in tryptophan or kynurenine, but further downstream, patients had increased levels of 3HK and lower levels of picolinic acid and quinolinic acid. Image
2) In the white blood cells of patients, the researchers found increased AMP and a lower ATP/ADP ratio, which both hint at an issue with sufficient energy production in immune cells.
3) The authors also tested plasma cytokines (IL-1β, IL-2, IL-4, IL-6, IL-8, IL-10, IL-12p70, IL-13, IL-17A, IL-18, IL-23, IL-33, MCP-1, TNF, interferon IFN-α, IFN-γ) but found no differences.

"We did not observe any differences in pro-inflammatory cytokines between cohorts."
Read 9 tweets
ME/CFS Science Profile picture
Dec 1
1) Interesting new hypothesis paper by the team of Ron Davis.

They suspect that the recently discovered glymphatic system (the 'lymph nodes' of the brain) plays a role in ME/CFS pathology. Image
2) The glymphatic system helps to clear waste products from the brain, similar to the lymphatic system elsewhere in the body. It assists with various clean-up processes, especially during sleep.

So ME/CFS could be due to a failed clean-up/reset problem in the brain.
3) In particular, the authors speculate that ME/CFS patients might have antibodies against the AQP4 water channels.

AQP4 proteins are expressed at the membrane of astrocytes throughout the central nervous system and facilitate the exchange of fluids in the brain.
Read 5 tweets
ME/CFS Science Profile picture
Nov 15
1) This study from Cornell University tested more than 6000 proteins before and after two exercise tests.

It found altered patterns in ME/CFS patients compared to controls, particularly in proteins involved in the immune system, signal transduction, and muscle contraction. Image
2) The study included 79 ME/CFS patients (selected using the Canadian criteria) and 53 controls. Participants underwent 2 exercise tests, and samples were collected at 5 different time points before and between these tests.
3) At baseline, no protein was significantly different between patients and controls.

The most interesting results were found, not immediately after the first or second exercise test, but after a 24-hour recovery period following the first exercise. Image
Read 9 tweets

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