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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.

I think for a survey to be accurate it needs some in depth digging into what services are actually doing. If it's just a questionnaire sent to the local funding bodies, or to the clnics themselves, they will probably just tick the boxes saying they are NICE compliant, or not bother to fill them in.

That seems a pretty accurate article to me. Thanks, Hannah Sharland. I respect Sonya Chowdhury for her swift action once the problems had been pointed out, but there is clearly an underlying problem that she and the trustees need to sort out over their ongoing relationship with the Bristol clinic.

I think the point of these closed meetings is that researchers can share unpublished research and discuss it. I guess Janet Dafoe is leaking bits of it via Twitter.

I haven't been feeling well enough to sort out a coherent reply to Sonya yet, but am reading this thread, as of course AfME staff and trustees are free to do too.

Another thing I think AfME should consider is asking for recommendations of existing resources such as some of Charles Shepherd's MEA resources. Cooperation where, for example, AfME endorses and recommends specific materials by others seems sensible to me.

It could be done more informally. AfME is a forum member. They could open discussion vial social media, including here on S4ME of any of their documents or projects, and allow free flowing discussion, then post their amended version for further comment. They could also invite applicants to be in...

I agree, @Sly Saint. I think we need to stay independent and be very careful about endorsing other organisations or letting them suggest S4ME approves particular projects or materials. Our committee has agreed to support some things.

I guess people who are colour blind wouln't be given this test.

Currently crashed so not able to say much. Very pleased by this response.