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Good point on skewing the sample by basically advertising free therapy for those with psychiatric symptoms- you can’t really claim you’ve recruited anyone other than ‘people with psychiatric symptoms who also happen to have x,y,z ‘ which isn’t the same as saying you’ve studied ME/CFS

Could be one of those lucky accident scenarios that was all that was needed where someone ran an experiment that happened to as part of its data capture the obvious and blow out the 'fatigue as captured by subjective surveys with leading questions' as if it were some measure. They've a valid...

:laugh::laugh::laugh::banghead::banghead::banghead:

Merged thread https://www.washingtonpost.com/wellness/2023/05/04/fatigue-tired-coping/ This article is also on the ME Association face book: https://www.facebook.com/meassociation/posts/pfbid02XHa5fkruCT4nQkxYPx5NrHHyA7Hg6CVAPtCyhHKan91EqFEuQKBQn695TKMUeTFml I've (hopefully will be forgiven)...

because it claims to be cheap in its sales pitches at each individual level. Quite different to if someone totted up all the kingdoms and % of all staffs time, including all those full time specific ones, doing this stuff, vs 'impact'. I imagine the cost is unbelievably huge actually -...

Yep there is an entitlement 'attitude' about it, no chance of leopards changing their spots and I don't think they think anyone really expects them to, just that at best they half go through the motions. But they/she obviously feels highly entitled to still have it. Ignores the memo, which is...

There is a discussion to be had about how the issue isn't just this, but the usage of this as a straw-man extreme to justify the 'but just a bit' and 'in the absence of anythign else' and all of the other justifications used by sadly a system that seems geared to as gut instinct end up...

I couldn't agree more. In fact it has taken me this long with ME/CFS to see all of these parts just in time for watching it all play out almost in identical form here. So I can see all the intentions and pragmatic compromises of 'we'll build from this' and so on. But them not realising that bone...

Good stuff that you've noted here. The PEM/criteria is particularly pertinent as it seems fundamental that a study is actually using the large proportion of money intended for a disease and its patients to investigate those who do have that disease. I would push for its compulsory inclusion...

Agreed - analogies like suggesting Rosmalen is doing the equivalent of insisting on recruiting one's own cohort of 'ulcer-like maybe-ish stomach complaint subjects' in the time of H-Pylori tests and scans showing severity, and when there is a cohort of people with H-Pylori tests there to be...

I'm being cautious or trying to be as I don't feel I'm fully on top of what is going on re: who is getting put into this FND bucket. But this video has someone who had a stroke having had epilepsy previously and notes the fnd part is issues with the messaging from the brain to other areas who...

And so I've had a think and do believe that the analysis of the individuals and modus operandi are also important - and merely need to be coherent (build the picture) rather than repetitious (7 repeats rule of advertising) because it is semantic memory. We also forget that humans are intrigued...

That's an important point to make. Repeating the most factual things in particular too. Such as Camelford. Those need direct repetition. I'm pretty sure I'd add the Maudsley and their philosophy type groups etc to the list because I can often feel that influence in some of the more unusual...

Oh I'm aware of its original intention in Darwin's actual writing but where I saw it most quoted of recent years was indeed wrong-usage e.g. in newspaper comment sections from people from certain ideologies used just as you note: to infer probably best to let the weakest struggle etc. It's a...

Am I right in thinking he is the one behind ‘the selfish gene’ book which pushes the idea of Darwinism survival of the fittest, being selfish good, type thing?

Key epidemiological factors like what? Being girls has been one cited by his ilk so I’ll assume that but interested to know if he’s bothered with any others?

Indeed and certainly with time. But there is also the e.g. holding a phone is OK then arm begins shaking as those muscles get tired. As this seems to recover somewhat enough that phone can then be held again at another point in the future it is interesting if this is being studied separately. I...

and that we don't know what symptoms are 'rolling PEM' or being above threshold in the 'perform but don't do yourself much good' zone vs are what .. constant something or other .. unless we have a way of really knowing when PEM actually ends. For all we know, as we eventually even if just for...

I haven't read the whole thing but can't imagine that this study was done without the individuals with most of the conditions being on their medications, and certainly they would have been on these for the years before (which tends to be where any differences will take place). So how on earth...

Thanks - will give it a try