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My current understanding is that the NIHR has funded very little on ME/CFS over recent years. The only exception is Heritage, which is a reasonably large project. It's possible that some long covid-related projects may be caught up in these funding figures. Number of unsuccessfully funded...

Hello @cherrypop Thanks for submitting this and sharing the outcome. This thread concerns FOI requests pertinent to the NICE guideline review in 2020. Your FOI is more about research funding, specifically from NIHR (which is part of the DHSC). A few years ago I submitted a similar FOI to the...

ThereForME is now a registered charity. X post:

Can I ask what symptoms this gives you and whether you have objective signs of this, e.g on the skin?

It would be interesting if this was a real signal. The authors found that higher sleep efficiency was associated with lower next-day (subjective) energy. My experience matches this. A restless night with some waking can often make it easier for me to come round in the morning (less sleep...

Why would they measure blood volume 8 days later?

Smoking, Exhaled Carbon Monoxide, and Risk of Parkinson Disease Abstract Importance Smoking has been associated with lower risks of Parkinson disease (PD) in epidemiological studies, but the underlying mechanisms remain poorly elucidated. Objective To investigate the association of exhaled...

I just saw on a recent Raelan Agle video the claim that the Norwegian Research Council has funded a large trial into mind–body reprocessing therapy with 900 patients. Is this documented anywhere else?

The funding situation in the UK is still in dire straits. Compared with 10 years ago, we probably have fewer small or medium-sized grants/projects, with fewer groups engaged in the field with active grants. Funds have instead been concentrated around some larger projects (PRIME and LOCOME). The...

One of the biggest changes has been Germany and Austria coming on board. I'm not entirely sure what sparked that but it was probably the jump in cases due to covid.

The transcript from my most recent GP appointment, which is viewable on the NHS app, was a complete mess. About half the words were wrong. Not sure if AI or not. The next time I checked the transcript had been corrected.

Dysautonomia is about as neutral a term as you can get. The term specifies *autonomic* nervous system dysfunction, not just that it's connected to the nervous system. The common thread through this pattern of signs and symptoms is altered function of the autonomic nervous system, some of it...

The also allude to lab results that I am not familiar with. Anyone any idea?

https://redcap.deakin.edu.au/surveys/?s=4TC9WCPFXETWHMN7 There are some very suspect claims on here about reversing mito energy issues etc.

What is the claim about pathology? This is just terminology for the sake of the paper. They explicitly say that they are not proposing this term is introduced beyond the scope of the paper. The conflicts of interests are listed at the end of the paper, under Disclosures.

Postural Orthostatic Tachycardia Syndrome (POTS) and Dysautonomia: International Multidisciplinary Expert Consensus Abstract Background Current diagnostic criteria for postural orthostatic tachycardia syndrome (POTS) require history of orthostatic intolerance and heart rate elevation of ≥30...

This is exactly what I suffer with. Much worse in PEM. It's like just looking is an instant trigger — the brain can't cope with processing vision, especially from a screen. And I get the burning eyes too.

What do you mean by this?

Yes, we absolutely need more research on this, in both POTS and ME/CFS. We know some of the key mechanisms likely driving orthostatic intolerance, haemodynamic alterations and compensatory tachycardia, though we need more and better quality evidence. The hard part will be understanding their...

Grammar rules out the window.