That's a really good point about CBT and how it just trains people to ignore symptoms and ask for help. It very much like how many people are essentially trained to ignore pain as it's not really there or even if it is it's not acute medicine so it doesn't take priority.
Yes, they do jettison people who get worse but I think one of the unforgiviable things with this rehab system they have put in place is that it just ignores the severe. If you can't get to a clinic or have long psychological sessions then they often discharge patients.
The Long Covid clinicians seem to live in their own world where they can have a nice pat on the back love in about all the wonderful holistic care they are giving and ignore the reality of the care people actually need.
There's probably a reason most of them don't have an online presence or mix with the community as it enables them to keep to their silo. I think the only time they did was with the Long Covid Conference they did which backfired as the LC charities kept posting about how excellent it all was and didn't mask, which caused a huge backlash and they pretty much went viral for the wrong reasons. It was there that they announced the launch of the Post COVID Clinical Society.
it’s tricky with long covid because the timing was such bad luck vs the new nice guidelines for me/cfs
Those new guidelines made it clear that the old people hadn’t been testing me/cfs at all, but manipulating access and using chicken and egg coercion and treatment that harmed to exclude people who had the actual illness and shut them up then blacken their name with cheap misogyny playground don’t listen to them rumour techniques if they did speak
the one underlining change from the new guidelines was that assessment of evidence showing none of what they did treated me/cfs and they had a major external validity issue
defining me/cfs as being based around PEM and energy limiting etc blows the fatigue and pps clinic’s out of the water gif bit just big treating that but being antithesis to them - we had clinics doing ‘anyone but’ in order to make a fake concept if the illness
I always though PACE for example was just a collateral damage trial and suggestion - based on writing off those who had the real illness and I think they knew that their approach would harm them and they’d drop out ‘but they could save those who improved and didn’t have that underlying body issue’
I do think they knew it because I think it was obvious from the start and I think all of us who tried this - whether our own mindset informal approach or official we’re doing the ‘assume it works and we aren’t one if the unlucky ones’
What was immoral about it was by using drop outs being hidden and fake stats they hid what % even in their crap definition had it. So we were all misled to think it’s really unusual- just a tiny %
but no they were being destroyed then buried and silenced and all the methods were focused on manipulating external validity and representativeness to infer this
I don’t think the profession has ever worked in the condition itself in a trial - it just didn’t care and didn’t realise how wrong it was in how many had it and they would hurt and how much covering up and manipulating they’d have to do fir that.
oh and clearly they also didn’t realise how useless their ‘treatment’ (which is a crap version of what most people do based in self motivation anyway) fir people who had a recover type anyway. So had to lie there.
but yes the cover up of the one thing their trial must really have discovered but they chose to bury was actually revealing me/cfs and PEM and the deterioration from keeping pushing through very much existed and was proven by pace. And in a huge number / proportion
that these people knew this and you shouldn’t be in any profession if you didn’t read thru that nice analysis of the behavioural and then be shocked and see what I saw…. Well they chose instead of taking learning from that fir long covid to ‘diagnose first’ they chose the crooked and his to cover up lessons by the looks many of them
so the elephant in the room is that those with the illness they claim funding for and claim to treat Aldo have the irony me/cfs has had where it’s the one cohort they don’t treat. They avoid doing their job snd do their preferred thing instead snd manipulate the people to make their wishful thinking deluded reframe reality seem to fit
I don’t think these professions have shown they can be trusted to do their own research - they can’t resist taking skewed samples employing the most damaging coercive communication approach and bias methods by their leading questions and fear of answers they don’t think would be convenient to them so silencing any method allowing for any sniff of null or truth - which you can’t call research but something else very insidious.
That they don’t realise to themselves that’s what they are doing, getting people to deny their own slow deterioration and say the right thing to get home to bed when over exhausted etc… and yes that no one is curious about all the ones who are most ill/ severe and get these other phonomenon ie the medical part … the bit that should have real medics and science and funding on it but are spaffing enjoying funding as if it were scientific with controls curiosity and testing the people they should be on their own cheap slap dash treat only who comes to you and is easy demographic. It’s like being funded to treat dyslexia and choosing to take the funding fir the worst cases based on you doing real research into what helps then choosing to slyly just do stuff with the easiest mildest ones so you can keep doing your little short courses that do little and not the real adjustments. Or anything else , like getting funding to treat the worst ezcema but only offering courses on taking baths and putting on normal cream for the mildest leaving those who need medical care cut out of rolll calls and photographs metaphorically
