ME/CFS Skeptic Profile picture
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

Jan 25
1) Interesting article about the German ‘Miracle’ study.

The project received ca. 2.5 million in funding to study neutrophil granulocytes and HDL in ME/CFS patients. Image
2) Neutrophil granulocytes cannot be easily cultured and must be examined immediately after removal and isolation.

The researchers, led by Dr. Alexander Dejaco at the University of Regensburg, suspect that these cells may play a key role in ME/CFS.
nachrichten.idw-online.de/2025/01/22/ukr…
3) The study aims to recruit 200 ME/CFS patients and will also include bedridden patients with severe ME/CFS patients using home visits.
Read 5 tweets
Jan 7
1) Interesting study with somewhat surprising results:

Mendelian randomization shows no sign of a causal relationship between major depressive disorder (MDD) and (self-reported) ME/CFS. Image
2) Previous studies noted that MDD and ME/CFS have symptom overlap and frequently co-occur. Some suggested that MDD might be a risk factor of ME/CFS.

Those studies, however, are based on correlation and cannot exclude confounders and determine causation.
3) Mendelian randomization is different because it uses genetic variants that are fixed at birth and randomly inherited. They aren’t influenced by diet, activity level, disease or other confounders.
Read 8 tweets
Dec 29, 2024
1) Here it is, our overview of the most interesting ME/CFS studies of 2024.

If you think we’re missing an important one, feel free to post it as a comment below 👇
mecfsskeptic.com/2024-looking-b…
2) A recent preprint used data from the UK Biobank and showed that there are many differences in the blood between ME/CFS patients and controls.

Their analysis suggests that these differences are not due to inactivity or deconditioning.
3) The Intramural NIH study did the most extensive set of biological measurements ever conducted in ME/CFS patients but because of the low sample size (n = 17) and focus on ‘effort preference’ it has mostly led to disappointment.
Read 9 tweets
Dec 26, 2024
1) In the process of reviewing the most interesting ME/CFS-studies of 2024.

I think this one ranks top of the list: Beentjes et al. Image
2) The authors used data from hundreds of 40-69 year olds ME/CFS patients from the UK biobank and thousands of controls. They controlled for sex, age and activity level and tested blood markers, proteomics and metabolomics,

medrxiv.org/content/10.110…
3) The study found that 290 out of more than 3000 markers were significantly different between patient and controls and that these were not mediated by physical activity levels. Image
Read 13 tweets
Dec 23, 2024
1) Martha Exck and colleagues did a large online survey of 2,125 patients with ME/CFS and 1,800 with Long COVID on what interventions they find useful or harmful.

The study was partly supported by the Open Medicine Foundation (OMF) Image
2) Let’s start with the caveat that social media surveys like this have a large response bias and cannot tell us which treatments work or not, you need randomized controlled trials for that.

But it still shows some interesting things.
3) Firstly, the symptoms of ME/CFS and Long Covid patients were largely similar. Fatigue, PEM, brainfog and unrefreshing sleep were the most troublesome in both groups. Image
Read 11 tweets
Dec 16, 2024
1) Some background on the ongoing Cochrane saga...

Before 2019, several patients and researchers pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.
2) It was Cochrane itself that came up with the initiative of writing an entirely new review with a new protocol, author group, an advisory panel, etc.
3) The reasoning was that the old review was indeed flawed but that only so much of it can be corrected because of the outdated protocol it was based on.

So a new protocol and review would be the solution. Here's how they announced this in 2019:
cochrane.org/news/cfsImage
Read 9 tweets

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