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If only people then observed to see whether what they blocked and deleted was actually critique….. I haven’t read this but as Knoop involved I assume it centres on the delusion elucidated in the Heins eg al (2013) paper that it is some sort of ‘useful treatment’ to con people into saying they...

To ask an open question - because some of these orgs aren’t always actually ‘just patients’ who don’t have conflicts of interest etc do we know specifically who it is behind these rather than just ‘their claimed cause’? It wouldn’t be the first illness or cause where some of those who...

I'd say the disability-level is someone's threshold (vs where they were according to the disability scales) vs what happens when they breach that included in it. I assume that includes both as it measures 'amount of time' or wat you can and can't do etc. No matter how low that threshold, and...

Yes sorry I should have said that I was in agreement with what you were saing as gist, but 'being pedantic' on those points (just because I agree that is where it should be measured but really don't trust that lot - who've run old-style clinics - for encouraging 'robbing peter to pay paul...

But what about those people who are very sharp or fit to begin with but have really bad PEM - it is not unusual at all for someone to be able to 'perform' far better than normal people, yet be utterly debilitated due to it for very long periods of time. In fact one might say there are large...

In discussion: is what comes before that line: You might note that what is termed 'psychological therapies' is actually an often now 'embedded' communication technique which reframes what someone says (CBT, embedded CBT is being put through all sorts of professions and I have a real issue...

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...