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Do less viruses in the blood of ME/CFS patients mean something about their immune system or is the most likely explanation less contact with other people and therefore less exposure to viruses?

Think it might help if people are outspoken about this on social media. For example, regarding the 'ME is not CFS' debate, there is this sense that patient organisations and researchers conflate the two out of opportunism. And that the non-severe patients don't get the difference and are happy...

Hermisson et al. Pflegeanleitung für schwer- und schwerstkranke ME/CFS-Patient:innen Resource for severe ME/CFS in German (including automatic translation in English) Document | Thread

Suspect it was normalized. Either way, they report the minimal clinically significant improvement to be 10 points. So the mean improvement was lower than this, despite having no control group.

Made a brief summary of David Tuller's interview with Prof. Hughes: 1) Interesting interview of Prof. Brian Hughes by David Tuller. In his new book Hughes argues that psychology is not woke but that its methods are essentially conservative because it focuses on an individualistic view and...

Perhaps a bit off-topic, but was wondering if ME/CFS is like sickness behavior, why we don't see more loss of appetite.

Anyone has access to the paper and the main results?

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...