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:hug: @bobbler, that was heartfelt. Thank you for sharing your thoughts so openly.

I agree it's an important problem that needs to be addressed. I think there's often little or no understanding that someone who walks into a clinic and sits on a chair, apparently without a problem, is able to do so for only a short time before needing urgently to lie down. In a well run...

Fibronectin was found by Prusty in ME/CFS: Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al

Fair enough. Any member is free to report posts that have been moved and explain why they want them left where they were posted. Sometimes we copy posts back to the original thread if we are helped to understand why they are relevant.

Perhaps it will help us understand the point you are making about relevance of the discussion if you share these 4 pages of points relevant to the paper here. As mods moving strings of posts that appear to take a thread off its specific topic, we are mindful that many pwME don't have the...

Hmm. My immediate response to reading this was that it's a problem if the subgroup you belong to is determined by which research group analysed your sample! I guess that's not what he meant.

I get the argument that really well trained doctors don't rely on biomarkers for diagnoses. But most of us in the UK with ME/CFS only have access to GP's who are clueless about diagnosing and managing ME/CFS, and persist in seeing us as having psychosomatic tiredness, and telling us to try to...

That sounds like an extremely skewed sample.

I think there is a world of difference between disability and disabling illness. I tend to say I have the latter, not the former. Many people with disabilities are very healthy, I'm not. I'm not making any judgement about which is harder to live with, but they are just different situations. I...

It's now over a year since we sent our first letter to Cochrane (28th August 2023), and started our petition (4th September 2023). It is fast approaching the 5th anniversary of publication of the Larun review (2nd October 2019). In our most recent letter to Cochrane a month ago, we said...

I have just sent the following reply to Sonya Chowdhury. I decided to make it a personal reply rather than trying to get agreement from all the signatories to the original letter. It's taken longer than I intended as I've been somewhat crashed for the last week. Dear Sonya, Thank you for your...

I think it depends whether you're talking about prevalence or incidence of new cases. I think prevalence of ME/CFS in older people like me is still important because lots of us got sick when we were much younger, and haven't recovered. I don't think that should be ignored in the data...

Thread on the PhD thesis that includes this research: Exploring the role of tryptophan metabolites in ME/CFS: Development and application of high resolution mass spectrometry methods, 2024, Abujrais

A published paper from this work is discussed on this thread from February 2024: Analysis of tryptophan metabolites ... in human and murine tissue ... using high resolution mass spectroscopy, 2024, Abuirais, Bergquist et al

Can AI or machine learning algorithms do the work for you? @mariovitali may have useful comment to make on the work he's done.

Maybe the reference to rubbish is the headline, which seems to me pretty odd.

Website: https://cureme.lshtm.ac.uk/me-awareness-day-2024-global-voice-for-me/ I can't find anything about the event on their website. Does anyone have more information about it?

In theory a great idea, but... Anyone doing a study should do a preliminary literature review beforehand to see what's been done already, so such collation should already exist in research teams. There are lots of review articles that are intended to collate and review evidence on a particular...

I assume that's another of the 'Lightning talks', 2 mins + 1 slide. It would be interesting to know what other unevidenced stuff is being given a platform under that unfortunately named banner.