NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

I didn’t use the word “low”, though yes, that’s a part of it, perhaps for some more than others. I meant their opinion of patients is what fits with what LP is. It’s slippery.

I don’t know if the RC spokespeople think LP is quackery, maybe some of them do. I’m assuming that they believe it’s as likely as anything else that changes our thinking and behaviour, if patients have confidence in it. Even a placebo will do - someone seemed to think there was value in a placebo effect in the draft consultation comments *. (If I’m misremembering that I’ll correct my comment). The opinion is infused with the belief that if PwME believe we can recover we’re likely to recover. Again, in the consultation comments it came up that there wasn’t enough ‘hope’ in the draft - patients need hope that treatments will work (so that they can work, I assume). Don’t say there’s no cure (there is no cure!). Patients, change your thinking and do stuff and you will be able to do stuff. (Eta Their arguments are more nuanced and slippery but still. It’ll appear to work for some.) LP passes the sniff test.

I didn’t say any of that though did I. Sorry!! I have a tendency to talk or write in an opaque way as my brain switches struggles and I don’t always realise I’m doing it. I probably just did it again, lol. Eta let’s go with what you said if it’s better

* When I’m up to it I may track it down to edit it in. Probably not soon.

some edits for clarity. Not enough sleep.

 

Actually, it is the Newcastle Foundation Trust providing the comments, not a particular service. They seem to have given the submission on behalf of their specialist services. They are also the ones who wrote:

 

I found the Newcastle comment regarding no harm from GET:

Edit: They also state that they do not use 'PACE' style GET (in another of their comments).

Edit 2: And clearly the patient is to blame if they experience a flare-up or relapse...

 

They (Newcastle Foundation Trust) state this:

So no need for the Yellow Card system for patients to report harm, even for pharmacological medicines then?

 

Harm needs to be proved by objective tests.

I would like to see someone admit to having made that statement!
Harm is almost universally established as likely on the basis of otherwise unexplained correlations at a statistical level. What objective tests show that smoking causes lung cancer?

 

I keep wondering if I have been duped into being overcritical by patient activists.
And then I see the garbage produced by the defenders of GET.
I stop wondering.

That's almost good enough to tweet.

 

We're going after 'em with their own tactics now, so your hypothetical tweet will read

I keep wondering if I have been duped into being overcritical by patients.
And then I see the garbage produced by the activists defending GET.
I stop wondering.

(Sorry! )

 

Fairy nuff.

 

Yes, now I am prompted to think about it, you can easily consider a disabled person being very sedentary, and then deciding to become more active, within their disability limits. They might then well become fitter, but their disability is still there; they are simply a fitter disabled person than they previously were.

 

"Harm needs to be proved by objective tests"

Even though more than happy to accept 'proof' of successful treatment by subjective tests? Even though harms should not require the same burden of proof to 'ground' a treatment as efficacy should?

 

What do they mean by PEM? They are not on planet Earth here surely.

 

Very likely many patients who engage with specialist services are at an early stage in their illness so I find the statement comprehensible.

But of course specialists don't follow up long term so have no idea how a person's awareness of their illness might change or become better informed by longer experience.

 

What strikes me that for all this talk of getting people better the patient population never seems to be getting smaller.

 

And ignores the research showing people attending the UK specialist services are likely to be working fewer hours and claiming more benefits following this intervention.

 

Yeah that too. But it would seem to me to be the most obvious indication. If you have a treatment that works so well you'd expect patients to get better and back to work in droves and the patient community decline rapidly. Yet it does not.

 

Also why has Prof Crawley developed a number of studies looking at alternatives to current intervention using as subjects children still unwell following treatment by the Bath specialist service.

Didn’t Crawley previously report a 95% success rate for the Bath clinic? How does she plan to conduct a number of sufficiently powered studies on those of the 5% willing to participate?

 

Its so easy to mark that homework. It's a tick for every catergory.

 

I really wonder if they had all heard on the grapevine that LP was going to be the next gravy train establishment funding horse to back and they have backed it with all their money without bothering to look at the form book. They dont care either way what it does they just followed the market thinking they had a dead cert, possibly being conned by a confidence trickster. They bought into the consensus without being in the consensus without validating the claims scientifically believing that everone else had the proof. That's how they think they are being lead by consenus thinking but when everyone else is doing the same thing you suddenly realise those clever other people with all the evidence never existed in the first place and everyone is stood around pointing at each other asking if anyone examined the evidence in the first place. Apparently this is often how Oscars are won, no one in the academy actually watches any of the films they just go along with what everyone else says, the problem is everyone is doing the same thing. If eveyone is telling you that x or y or z works in their clinics who the hell is going to say it doest work in theirs? They are basically a bunch of inbetweeners all lying to each other about their conquests because their mates are saying they did it too.

 

This is just speculation and perhaps of no real help but I see it IMO more likely that Phil Parker was wanting to expand his empire and running into trouble, offered a number of relevant BPS'ers a financial incentive to back LP. Sort of like you would offer stock options and then the person is invested in the outcome.