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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
Oct 21
1) Dr. Vanessa Velasco gave preliminary results on OMF's new neutrophil study.

She found that neutrophils of ME/CFS patients died quicker and more often than those of healthy controls, under inflammatory conditions. Image
2) Neutrophils are immune cells that form the first line of defence when there is an infection. The researchers were able to isolate the neutrophils from whole blood, without changing them, and then mimic inflammatory conditions in the lab.
3) The experiments showed that ME/CFS neutrophils moved slower and produced more reactive oxygen species than controls.

There was also less apoptosis among ME/CFS neutrophils: they don’t die properly when they should. This could prevent the body from resolving inflammation.
Read 5 tweets
ME/CFS Science Profile picture
Oct 20
1) Impressive study from Johns Hopkins researchers.

They infected mice with SARS-CoV-2, found that female mice had a stronger immune response and more cognitive problems after 84 days than males, and that this was due to over-expression of genes such as Tlr7 on the X chromosome. Image
2) The study tries to answer the paradox of why males are more likely to be severely ill during infection, while females are more likely to develop Long Covid.

They confirmed this in mice: males had more severe acute illness while females had more lingering cognitive problems.
3) The working memory of the mice was tested through various behavioural tests. There was also a control group of females without infection. Yet only the infected females did worse on maze, marble burying, and novel object recognition tests.
Read 19 tweets
ME/CFS Science Profile picture
Oct 19
1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body.

Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders. Image
2) PET scans work by injecting a radioactive molecule into the veins. The scan records annihilation events where a positron leaves the cell and collides with an electron, creating two photons. That signal tells us where in the body the radioactive molecule is binding. Image
3) Ideally, you want a radioactive tracer that is highly specific to a certain cell type or process so that you know exactly what the signal means.

In this ME/CFS study, they used the popular TSPO tracer, which binds to microglia, astrocytes, myeloid cells, etc.
Read 8 tweets
ME/CFS Science Profile picture
Oct 13
1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS. Image
2) In our view, the clearest signals point to genes such as CA10, SHISA6, SOX6, LRRC7, and DCC, which are involved in neuronal development and communication in the brain.
3) There are also gene candidates that implicate the immune system such as OLFM4, RABGAP1L, BTN2A2, and TAOK3. These point to e.g. the innate immune system and regulation of T-cells.

Unfortunately, they lie in regions stacked with genes and are therefore more uncertain.
Read 11 tweets
ME/CFS Science Profile picture
Oct 4
1) We’ve written an article about the DecodeME results: what the study measured, what the results show, and why its findings are important. Image
2) DecodeME is by far the biggest study on ME/CFS ever done. It may not have caused a big breakthrough, but it adds an important piece to understanding the puzzle of ME/CFS.
3) We therefore think it’s worth digging deeper into the DecodeME summary data (which is publicly available) to understand what it means for ME/CFS research.

Our blog tries to explain the methodology in simple terms so that readers with no genetic background can follow along.
Read 7 tweets
ME/CFS Science Profile picture
Sep 27
1) This lecture by Prof dr Vivienne Matthies-Boon is a good introduction to the problems with the biopsychosocial (BPS) model and the harms it has caused in the ME/CFS community. Image
2) In brief: BPS proponents think there is no objectionable pathology in ME/CFS, so they see the disorder as mainly caused by the belief one is ill and the inappropriate resting behavior that follows (sleeping too much, exercising too little, focusing on symptoms, etc.).
3) Everything that reinforces this belief that one is ill, is therefore bad: biomedical research, disability payments, patient organisations, care from family members: these can all be seen as perpetuating factors according to the model.
Read 10 tweets

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