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The list looks good but I think longitudinal needs to be thought out - on basis it is likely to operate like ME/CFS of ups and downs in severity and support changes really being needed at those points. What is the model (if you take out the 'there isn't a cure' - which the more I say it the...

Is NIHR affected by this?

Does anyone have info on what the sources of funding are for the ME/CFS of the type we'd want to see more of? I know there are EU funding schemes, what I haven't looked into is the 'behind the scenes' where certain funding sources are going to be affected that don't have the...

It is when you focus on these bits that it starts to remind of something that was a nasty, we've tried to forget to the depths of history, treatment of some condition in the old days - perhaps autism, but maybe something else. I don't think ME is 'unique' over history and I think that this arm...

It is the specifics of it all in treatment that is 'intimate' and I think that is the right word given you are controlling what someone is allowed to enjoy,do, when they can sleep to minutiae is there another - particularly when it is diaries and intricate planning to this extent. To put the...

'Moments of truth' listing what was missing or warped by bad paradigm and need to be high on agenda for current talks and those who won't get those opportunities back I struggled to get the title right on this. I might have missed other posts doing this well and really want an 'area' started...

Pathetic stuff. It is entering full manifesto-level realms with this. Terrifying what you would have to believe you have to write some of these things, given the Nice guidelines, regarding being emboldened to continue as you wish. "were recovered (absence of severe fatigue)" We really need a...

I was thrown and wondered for a moment whether I'd somehow found the wrong person of 2 with identical names. I'd theoretically get the power of thinking 'well this is an issue for everyone and there is power from 2 political sides being on the methodology', but I'm unsure whether they are both...

Interesting. I was just looking up who the authors were, given they threw out the potential red flag of "and the critics often lack field-specific skills and technical expertise". I have got distracted by finding the following quotes (in the following paper (Vink and Vink-Niese, 2022...

Yes, sorry didn't make it clear I wasn't questioning that so to speak - my question was more about it feels a big jump that they have made to infer that ongoing that is accustomisation that is good and follows any set pattern without continuing to monitor. And certainly agree that getting people...

"Response shift through reprioritization was indicated for the items “Physically, I feel exhausted” (CFS) and “I tire easily” (cancer, diabetes), which became less vs. more important to the measurement of fatigue, respectively." For not just CFS but cancer and diabetes. Given all need to be in...

Have they evidenced any of these? I was still doing a pretty physical job (despite being moderate) when I had a synacthen a decade ago and had to change roles. I've been severe for a number of years when I had one more recently. The results were pretty much identical. I highly doubt my body...

I think there is something to be said for needing to clear down or allow for clear down of inaccurate medical records. Surely even those in the medical profession must admit that we've had years of people going to GP and being told its some sort of mood disorder as a first presumption for...

How quickly does that happen - if someone was highly active and then gets long covid?

Am I right to assume the refs that don't have Fukada in brackets don't use Fukada? If so was it tighter or looser criteria for these studies?

Sort of agree but given that the range/line for the LC box comes down to 0, with some people at 0 (which would have a pretty heavy impact on a mean) I'd have to have a closer look to see whether how much this is one or a few with a very significant issue impacting the mean. I haven't gone...

thanks for the heads up - made me realise it is in the figures section. Hm interesting, there is a reasonable enough std deviation and slightly frustrated the 'difference between resting vs stimulated' isn't reported, don't quite know how that would be useful but I guess std deviation again...

you can tell how my week has been when say snarkily that with an image like that (can you GET more 'I'm into positive thinking'?) ... EDIT: I meant the 'Done' image with the tick through it, but having looked can see the comment isn't unapplicable to the others

OK had a proper-ish read through within my capabilities today. They did a synacthen test at the beginning and end which is in the adverse events section. They put bits in the literature review/intro about theories on blunted cortisol response in CFS. But they don't seem to have noted - unless...

Yes in a sense I can see why certain things can be circular because if there are different types (of either ME/CFS or indeed a medication or 'the regime' of it) you can see how things can cycle round where there is good reason due to a development. But I like the fact that whilst this is...