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It was an example of how easy it is for good intentions to completely miss the need issue and how precision of understanding exactly what the situation is in order for something to actually be a solution rather than rubbing it in as someone not only not being heard but also their desperate...

But how do you know @Hutan ? Using the 'feasibility principle' for proposed conclusions is unfortunately a classic trap we all get bound by from bystanders - it isn't the same as them being definitely what these people said. And when you are in such a precarious position those 'small...

You mean like “we’ve funded for someone to teach you mental coping techniques for when you can’t get food due to being unable to move your body and debilitated” instead of sorting them being fed is just utter stupidity and bigotry on all levels and people shouldn’t be allowed to pretend they are...

In a theoretical hardball strategy you also need to start unpicking the psychosomatics so they no longer have jobs and kingdoms ie follow-through right to the end once they’ve been found out or picked up on something. If it were the other way around such people wouldn’t hesitate to ensure there...

I’d go so far as the issue being useless people getting funded because some of it is in the workload model for a role I assume is tenured. Some of it should look at how bad someone’s research has been the past on basic quality and require said people will only get funded if they demonstrate...

Not hard to believe with Chalder one bit

Hmmm I recently in last six month got into this guys blog so was pleased he’d got a column. but is this showing a big change of tone to what expected on reading this? I’m tired so haven’t been able to mentally analyse as I might the points he makes in ridiculousness of listening to patients or...

Absolutely agree. This is not upfront and given its psych stuff surely should particularly be a major ethics issue.

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...