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They excluded the 7/37 participants who dropped out They do not compare results to a control group The participants received 40 sessions, which seems quite a lot And still the improvement was only 6.3 points on the SF-36 PF (a clinically meaningful improvement was defined as 10 points) So it...

That seems more like an argument that proponents of biomedical research would emphasize. Because biomedical research might provide a magic fix like a drug, vaccine or genetic test that could rid of the disease from society almost entirely. It holds much more promise in financial gains than...

No, it's often the exact opposite such as in psychosomatic theories on autism and schizophenia or articles blaming neoliberalism for making people sick, causing illnesses such as burnout and CFS. It's common for psychosomatics to emphasize societal problems as the cause of the illness. The...

Yes psychosomatic theory is sometimes used as a tool to justify withholding financial support from patients. But psychosomatics isn't about that and it was popular much earlier in other diseases and contexts not related to insurance or disability benefits. In the case of cancer and heart...

The psychosomatic theories on schizophrenia or autism, thought that the mind of patients told something about the essence of human nature or society, rather than biology or disease. So by studying the symbolism of patients and their symptoms, these physicians thought they could learn a hidden...

Same with Flanders Dunbar who even attributed physical accidents to psychosomatics and personality type. But the type of psychosomatics we deal with in ME/CFS is one that denies a biological pathology and emphasizes that full recovery is possible. Clearly that way of reasoning is contrary to...

Psychology perhaps, but probably not modern psychosomatics. Would be interested in how they connect the views of Bettelheim, Kubler-Ross, Franz Alexander, or Engel to neoliberalism or eugenics. The popularity of psychosomatic medicine after WOII (before neoliberalism!) was mostly a...

This would very much surprise me. I've read a lot about psychosomatic in ME/CFS and other diseases and to me it was pretty clear that it came from progressive circles, who were working in response to eugenics.

More in line with how the patient community reports and understands PEM, which seems quite different from the exertion intolerance that it is often confused with. I think in many studies, researchers need to screen or select patients using questionnaires as DecodeME had to. Luckily we had smart...

The Common Data Elements previous description of PEM was quite useful as it highlighted the key components. Source: https://www.commondataelements.ninds.nih.gov/Myalgic%20Encephalomyelitis/Chronic%20Fatigue%20Syndrome

Not sure, the link you shared isn't explicit about this. I thought the Common Data Elements was mainly about selecting tools to recommend for use in research, rather than developing new ones. Perhaps someone on the forum knows more?

The long PEM questionnaire by the Jason group gives some interesting data on potential PEM-questions: Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey - PubMed The development of an instrument...

A lot of ME/CFS research already uses questionnaires to assess PEM, for example, for screening or diagnosing participants. So it would be valuable to have something that is better than the questions that are used today such as: do you have PEM, do you get tired after exertion, etc. Think it...

Looks like they tested more than 2000 peptides in a cohort of only 30 cases and 30 controls (with ME/CFS patients in both cases and controls).

Here's what I think the study did: A previous Norwegian study found a link between HLA-variants and ME/CFS. Two were risk factors (more common in ME/CFS) and two were protective (more common in controls). This study checked how well these 4 variants bind to human-herpes viruses (HHV). Turns...

Thanks @forestglip!

Agree, and would be happy to collaborate on something like this. As I see it we would have to make a list of PEM statements that reflect how patients understand the concept and are useful to detect ME/CFS. We would then need to test these in ME/CFS patients and disease controls to check the...

Posts moved from main DecodeME thread. --------------------------------------------------------- Could you also check the region above TAOK3 on chromosome 12? It was found to be associated with lupus according to the GWAS catalog...

Thanks for the useful analysis, especially the comments by Trish. I'm also a bit confused by the scoring system. What does it do or indicate? Assuming a higher score means a stronger indication of PEM, then there are a couple of issues. Having more triggers would be a stronger indication of...

Was wondering if TLR7 is important, wouldn't we expect to see differences in SNPs that influence the expression of TLR7? Haven't read the entire thread, so might have missed something.