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Of course — my comment was not meant as a sweeping generalizaiton. I am explicitly talking about this in the context of PAG and similar groups where everyone seems to be pulling in the same direction, because that was my experience as a member of PAG.

That must have gone live this weekend as it was still down a few days ago. It's definitely an improvement on the last effort but there's a lot of stuff missing and it still looks quite basic, like they've not got a budget to get a website professionally designed. Sorry, didn't get notified of...

This seems self-evident. I really don't know what the aim was here. There's a paywall for me.

I can't find anything about it — just a few other studies with the same name. I've been searching for info on EU Horizon projects that have been funded, but can't find much on that either.

https://meassociation.org.uk/2026/02/forward-me-agm-and-guest-lecture-register-to-attend/ Upcoming AGM and guest lecture Date: Thursday 5th March 2026 Time: 14:15 – 14:45 (GMT) – Annual General Meeting 15:00 – 16:00 (GMT) Talk by Tahlia Ruschioni on the Bateman Horne Center Clinical Care...

There was a short section on DecodeME with Chris, but it was Prof. Stephen Holgate who was most featured. He did a good(ish) job, but I still don't think he quite 'gets it', and does not readily communicate the seriousness of the illness, although he did mention the 25% stat and that people are...

I am not aware that NICPM has reopened out-of-area referals. The notice on their website still reads:

Eleanor Stein is somewhat adjacent to the mind–body and recovery grift stuff on YouTube, so I would treat this with caution.

Yep, definitely a graduate project. The Raj group is probably one of the leading PoTS groups in the world so maybe we could have expected more....

Abstract Background Postural orthostatic tachycardia syndrome (POTS) is a chronic autonomic disorder associated with debilitating symptoms. No medications have been approved for treatment, and patients commonly use off-label medications to treat symptoms. The hemodynamic implications of certain...

*Borat voice*: GREAT SUCCESS!

You can check the publications associated with each project by clicking 'Publications' on the corresponding project's UKRI page, e.g., https://gtr.ukri.org/projects?ref=MR/J002720/1&pn=0&fetchSize=10&selectedSortableField=firstAuthorName&selectedSortOrder=ASC for the Ng study of fatigue. Note...

https://faseb.onlinelibrary.wiley.com/doi/abs/10.1096/fasebj.29.1_supplement.1055.34 + others listed on the UKRI project site (see note in the next post).

I don't believe the Nutt study amounted to anything.

Garner's not going to be able to contain himself reading this

This is ambiguous to say the least. The Facebook post says nothing about long covid, but the poster says participants must be diagnosed with "ME/CFS to CCC/ICC and long covid."

Yes, I remember now. OI comon in ME/CFS but it's not always PoTS.

This survey estimated 27%: https://meassociation.org.uk/2023/11/the-me-association-postural-orthostatic-tachycardia-syndrome-survey-results/

Ok, but that means you have to measure blood pressure, which it sounds like they didn't do for half the test. Active stand rather than TTT will likely explain the low POTS rates. I don't trust anyting from Knoop + co having looked into some of his work.