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I don't think Polybio is a lab. I think it's an organisation that raises funds and allocates them to whatever research they think worth doing, a bit like OMF.

I think I understand where you're coming from, @butter. We all want lots of excellent research that will make real progress with understanding ME/CFS and lead to treatments as soon as possible. I feel the desperation and despair. I just wonder if you are aiming your criticism at the wrong...

This discussion makes me think of the billion dollars the NIH was given by the US government to research Long Covid, which as I understand it is largely used up with precious little to show for it. Of course we can all agree that money is necessary, but larger amounts of money don't necessarily...

The authors are all at Brigham hospital, Boston. Out of curiosity I looked at what references they used for ME/CFS:

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?