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The level of ignorance about ME/CFS is clear from their use of the term PEF instead of PEM, and describing it thus: And then of course supporting PACE and arguing against NICE.

Thread on this research paper: https://www.s4me.info/threads/identification-of-cd8-t-cell-dysfunction-associated-with-symptoms-in-me-cfs-and-long-covid-and-treatment-with-a-nebulized-2023-gil-et-al.36702/

In the examples you give, the perception of symptoms is accurate, you have symptoms of pain in your leg, or you have symptoms of weakness and lack of energy. These are not false perceptions of the symptom. What I think you are describing is false interpretation of the cause of the symptoms.

This is ridiculous, the patient didn't have long Covid, she had about 7 weeks prolonged recovery from acute covid then got better. Many of the people I know who have had Covid have a similar period of a few weeks or months of symptoms then recover without needing mind body mumbo jumbo. Long...

Hi @Nitro802, welcome to the forum. Can you tell us more about the article, such as where you hope to get it published and what particular perspective you intend to take. If you don't want to say more on a public thread you could do an Introduce Yourself thread in the members only area.

It seems like the sort of situation where a next step might usefully be to take fresh blood samples from a restricted population group to enable easy comparison. For example, women with normal BMI, not on any medication, with no co-morbidities, and pre menopause, and as a pilot study take ten...

If the microclots are, as suggested, an artefact of the process and only present in vitro, then the question that needs to be asked is, why are there more microclots formed in plasma of pwLC, an intermediate number in pwME and the least in healthy controls. Is there some factor in the blood that...

I met someone many years ago with ME who was an Alexander teacher. She moved very carefully and sat and stood very upright, but it made no difference to her ME. I remember reading about it at the time. I gathered it was popular with actors and musicians.

I'd like to have been a fly on the wall for that conversation. I hope she gave him both barrels. The idea that someone so sick as Whitney is suffering from faulty 'effort preference' is so abusively insulting.

He may have been invited before the Walitt NIH study was published.

A very impressively thorough overview of the situation, @ME/CFS Skeptic. Thank you.

The BDI-PC is a 7 item questionnaire with each item rated on a 4 point scale (0–3). It is scored by summing ratings for each item (range 0–21). Items are symptoms of sadness, pessimism, past failure, loss of pleasure, self dislike, self criticalness, and suicidal thoughts and wishes.

Hmm. I started reading but gave up. It seems to be a hypothesis from a non scientist based on cobbling together anecdotes, blogs by other non scientists, and the odd bit of poor quality research and untested hypotheses.

If the training is in the form of 'be a good listener, don't argue with or offer advice on how people manage their lives, and have a pile of leaflets available with links to reputable sources of support, that's fine. Any more seems to me inappropriate.

I don't remember coming across this author before. She has written other articles and done talks on the subject. Since I can only read the abstract and book description that's full of jargon, I can’t fathom her views or conclusions. It looks like the book will be based on her PhD thesis.

Are they saying high degrees of perfectionism predicts improvement?

Wow, you have achieved so much good work in your first 5 years. What a team. :trophy@Thank you.

I think that's important. Single time point or single day upright and activity is not necessarily an indicator of health on that day, it needs to be combined with symptom severity and plotted over time to see what patterns emerge.

Do you mean financial incentives? I'm not sure what you are saying here. If we all worked on fundraising for research instead of using our energy to discuss research here, who would be here to discuss the research with the scientists when they get the funds and come to find us? I see part of...

That seems like cheating. They should report the overall figure, not cherry pick the one piece of data for those who did better that looks impressive.