UK:Letter to all clinicians and services from the CPCS Professional Society

The urgency to meet the needs of patients with post-acute infection syndromes (PAIS) and reduce the healthcare burden & economic costs - Letter to all clinicians and services from the CPCS Professional Society
@NHSEngland
@NIHRresearch
@Clinicalpcs
@long_covid
#MECFS #LongCovid

https://twitter.com/user/status/1841942520005062900

 

No thanks. I’d rather not.

 

Could somebody give a transcript of that letter from the 'CPCS Professional Society' to the Royal College of Physicians please. I am on a laptop and cannot expand the size of the letter. It sounds ambiguous and worryingly open to interpretation. Thank you.

 

It seems to be from a group of rehabilitationist doctors and therapists called the Post Covid Society without a website based in NW1. It basically says that they have been doing great job in clinics getting people back to work and want to go on getting money and not have the clinics transferred to some other body that will shut them down.

 

ME Association: Professor Manoj Sivan to develop new protocol for #dysautonomia in #MECFS and #LongCovid The #MEAssociation is delighted to announce that a grant has been awarded from the Ramsay Research Fund to Professor
@sivanmanoj
and a team based in Leeds.

https://twitter.com/user/status/1803407112149647512

 

That it cites the awful LC clinics funded in the UK as some sort of model, when they are widely considered a joke, is just one of so many problems here.

 

I've done acouple of screenshots, which should be easier to read or expandable.

 

Worrying to see Dr Terry Segal of the notorious UCLH paediatric/adolescent clinic.
Also Joanne Bond Kendall, who was physio in Bath and on the NICE GDL C'ttee and was one of those who resigned.

 

But the rest of the NHS and the Department of Health have got their fingers stuck in their ears singing "la la la, Covid is over, it's all in the past and it's very important that we never ever think about it again." As far as cavalry goes, these guys are about on the level of primary-school kids on hobby horses, but they're all we've got.

 

But are they what you want?
Dr Sivan is a rehabilitationist and recommends individualised rehabilitation for Long Covid. He has an article that talks of pacing but in the context of rehab activity.
I don't see these LC clinics as ever intended for long term care. They claim that they are cost effective because they get people back to work. I doubt there are any data on efficacy since there are no controls.

 

What I want is not to be left to the mercies of a GP whose approach to Long Covid is to ask me if I've tried yoga and give me the link to some online CBT. Right now, this lot seem to be about the only people in positions of relevant authority who are saying that might not quite fit the requirements.

 

But what do we think they have to offer that is better, rather than worse (GET-lite, pacing-up).
Nobody has anything else to offer as far as I know.

If I remember rightly one of the people signing the letter burst into tears when they had to agree to abandoning GET.

 

It looks like a plea to basically keep their jobs. Most of them are key figures in running the Long Covid network. They love the biopsychosocial model, and even try to refer to it in the most ridiculous 'poignant' way.

It just gives me the creeps. They even have the nerve to say without them people won't get better, even kids. When they offer absolutely nothing. Most of the LC staff throw a wobbly at 'medicalising' the illness and won't even do a NASA lean test.

It's quite crass really at a time when groups and individuals are calling for severe and very severe provision and protocols. A letter asking for that, if they truly represent 'all' post acute infectious conditions might be worth the paper it's written on. But these people don't see they are part of the problem, offering crap multidisciplinary care based on rehab.

Its a few folk getting together (badly) to try and dominate a field and be the new BACME, who they are already working with.

 

It’s the abandonment and denial of acknowledging the existence of those who get worse or are harmed (and it’s numerous ways because I think the CBT is a complete mind screw that lasts forever and prevents you being able to ask fir care and think what your symptoms are it trains you so hard to ‘don’t mention or think of’) that is so unforgivable

people who did the right thing for them and went all in acting as Guinean pigs putting their bodies on the line and faith in them to ‘give it a go’. And the heartbreak to realise how irresponsible those people are that when their treatment turns out to fail they then treat those they’ve victimised, the ones with the consequences with disgust and disdain for existing rather than being grown-ups and looking after them to at least take responsibility for picking up the pieces and making life sustainable after the damage caused.

you can’t have people who think like that, or a specialism who has an irresponsible new way of working where they just jettison those who get worse and don’t acknowledge harm (and hear those who get worse and be interested in that happenning to at least some, ie those with PEM) rather than doing medical care where you are responsible for the lifetime and are held to account if you make the same mistake twice by choosing not to listen or see /hear that was the end result from the first time.

it sort of doesn’t matter what you offer or don’t if your ‘regulations’ let you not measure harm or write off deterioration as not relevant so only those who improve ‘count’. That’s not medicine and would be a slippery slope for it if that attitude were to become more prevalent.

it does need some who care. But it’s gif to be about all and not just leaving collateral damage in their wake whilst they seek to fish out only those who benefit from what they want to sell. If there isn’t a side of that college interested in the conundrum being those who can’t be exercised better then in actual fact is it ‘treating’ or tackling LC ne/cfs at all ? Or is it just trampling them

and what do you the chances are any of them are interested in dealing with that real segment that is the real issue? Do any of them have the skills/areas of specialism they could help those with PEM?

 

The Ramsay Fund seems to be making some surprising decisions. Does anyone know what is going on?

A compassionate and fearless family member who died a few years back stated in her will that in lieu of flowers, loved ones should donate in her memory to the MEA, specifically for the Research Fund.

She was passionate about supporting innovative biomedical research. Between this and the PROMs project, poor Great Aunt must be turning in her grave to see those donations honouring her being used to fund rehabilitationists.

 

Not really.

The dysautonomia project seems to be a sort of trial of various treatments for orthostatic intolerance. The summary on the MEA site does not give a lot of confidence that the trial has been designed well enough to tell us anything. It isn't even billed as a trial but as 'developing a protocol'. I wonder if it has been registered as a trial.

Some good trials of potential treatments for OI would be worth doing but there do not even seem to be any controls here.

 

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