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Yip standard advice for policy folks: 1) evidence based policy development - that's the official Government stance; 2) policy based evidence development - your Minister wants something done --- go "develop" the evidence base!

I've heard that OMF plan to do a (Abilify) trial - anyone know anything about this?

I think it's used in bi-polar (type 2 bi-polar or some such) Who is the Jonathan you refer to?

I'd heard this before e.g. I think Maureen Hanson may have outlined the problem and solution ("ring fenced" or "set aside funding"); however, I'm impressed by the clarity/directness of Karl's message - thanks. @Michiel Tack @Giada Da Ros @EspeMor

Slightly unusual responding to your own post. I received a few questions re my post --- Chris Armstong found specific amino acids used- Chris's study was way back in 2015; subsequently Fluge and Mella added to that (2016) -- might be others Supplementation with amino acids - search this forum...

I think part of this is explained by @Jonathan Edwards "The problem is just that as a scientific question ME is very hard to see a way in to." If you take a clinical post in ME (if there is such a thing in the UK) then it's currently very difficult to treat people plus it's very difficult to...

Couple of researchers who might provide insight into lack of funding - Warren Tate and Carl Morten

I think I recall that you @Jonathan Edwards suggested that this was a reason a GWAS study was a good idea i.e. GWAS may give clues to the cause of ME. Bit about GWAS here* https://en.wikipedia.org/wiki/Genome-wide_association_study Also @Simon M (from memory) has highlighted that a number of...

I would have liked to see objective assessment of sleep disturbance e.g. using sleep monitors. Haven't tried to research it but the technique they used (1h-nmr spectroscopy) is generally considered to be a reference technique i.e. gives accurate results. Not sure about urea results "decreased...

Am I missing something or is this gibberish? Reminds me of the Sir Humphrey "which suggests that reversing deconditioning can lead to recovery" --- so the problem is lack of exercise (deconditioning) and the objective is to reverse that deconditioning? Surely the problem is the "dysregulation...

I'm planning to listen to the Radio 4 programmes How to vaccinate the world [https://www.bbc.co.uk/programmes/m000py6s/episodes/player] The presenter (Tim Hartford) was interviewed on BBC2 - Newsnight last night. I think one of his replies, re how long immunity would last, was - we'll just have...

Bit more from Robert Phair - haven't read them yet. https://forums.phoenixrising.me/threads/dramatic-improvement-in-mental-symptoms-from-melatonin-dosed-in-the-day.43606/page-2#post-2307414 There's also some stuff on the metabolic trap but it's only available to members.

"Multiple randomized clinical trials have found that exercise therapy provides some benefit to patients with chronic fatigue syndrome. However, this treatment is being removed from clinical guidelines." Yea when you start off with "Multiple randomized clinical trials" then you should be able...

Thanks @Snow Leopard maybe need a cup of tea and a clear head before I re-read this!

Could the weird design be due to the fact that you can't prove a negative i.e. you must test a positive. In this case they try to test the (+ve) hypothesis that day 2 performance will be the same as day 1. If I'm talking c--p here then feel free to point it out!

This is a thing of beauty (unfortunately not rare beauty): "Despite a lack of distinct immunological findings, it is accepted that CFS can occur in the absence of demonstrable disease [57, 58]." Possibly re-phrase as: Despite a lack of distinct immunological findings [replace "distinct...

Yea I guess the numbers are fairly big (23K in the control and test groups?) - so the exposure should be similar - I guess. Once they roll it out then it should be fairly clear i.e. the efficacy.

Interesting. If the incidence is 1 in 2000 (0.05%), and it looks like it may be, then Long Covid would qualify for inclusion in the European Reference Network (ERN). Anyone know the people heading up the Long Covid charities? @Michiel Tack

Really don't know much about this publication (draft guidelines). However, in general someone/working group is "selected" to look at the issue (prepare the policy paper); there is of course a context for the review --- concerns that the current guidelines ---. A report/document is prepared and I...

Bits of this were hilariously funny --- some not so! Thank you very much for summarising it so accurately.