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

[Skycloud]

That's my take on it. They are OK with junk pseudoscience because they believe ME is a junk pseudodisease. They all understand it's quackery, they think it's OK for us, because that's how low they think of us. Nothing mysterious about this, to them it's like a tea party with dolls, don't need to spend too much attention on how long to cook the cake, or whatever.

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.

 

[Simbindi]

I think that's called wilful blindness. Do they provide evidence of following up their patients? A study with data? If not it's a hollow claim.

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:

Clinical experience has shown that patients who engage with specialist services find the negative attitude of local and national support groups too difficult to cope with early on in their CFS/ME journey. Some patients have described support groups as all doom and gloom, focusing on how ill people are, some patients have described them as a ‘pity party’. As such, we have found that in some cases these support groups are indeed harmful to the patient. Within specialist services, we acknowledge the disability and loss, but then focus on what can be done to reduce the level of distress or disability

 

[Suffolkres]

I never got past the ABN comments with my detailed reading of comments vs NICE responses, but have moved on to a quick skim read of the comments from some of the main stakeholders.

It does seem that the so called specialist clinics have never seen a severe ME patient and few (if any) moderate patients. The 2007 guidelines must have been a big factor in this skewing of patient referrals, since there were no 'treatments' recommended other than the GET and CBT for 'mild' and 'moderate' patients - although in reality, how many 'moderate' patients would have been able to attend the necessary sessions to complete treatment?.

It's also clear from their feedback that they have no idea of the long term prognosis of ME/CFS or what happens to their patients after they have completed (or gave up on...) their time limited 'treatments' and been discharged back to the GP. So how can any of these clinicians/therapists claim to have meaningful expertise in ME/CFS? That they don't think ME/CFS should be a clinical entity confirms the fact that they are not specialists in our disease at all, and don't seem to want to be!

However, the new guidelines clearly state that ALL of the new guidance applies to severe and very severe patients, even though they have the section for additional information and recommendations for this neglected population. This will put the onus on CCGs to ensure that any specialist ME/CFS service that is commissioned will not be able to exclude the more severe patients from access to clinics, which (despite claims to the contrary) the majority have been doing over the last 14 years (Edit: on the basis that there were no NICE recommended treatments for them).

I can't see how these 'specialist teams' are going to be able to get to grips with the vast gulf between the mild (often non-ME) patients they have been seeing to date and the reality of what moderate, severe and very severe ME/CFS is. From the comments I've been reading, they all think they are 'doing it right' already, not only is there no appetite to learn and change, but instead a deep resistance. I think they wanted to be allowed to go on only seeing the mildest patients, not any that might expose the lack of efficacy and harms of their current approach.

 

[Simbindi]

I found the Newcastle comment regarding no harm from GET:

We do not recognise the basis for the ‘controversy over GET’. Where does the evidence of harm from GET come from? In 15 years working as a specialist team, we have not met any patients who were harmed by GET. Who offered these patients graded exercise therapy? What is the evidence that a relapse was down to exercise therapy and not another variable? Clinical experience has demonstrated the boom and bust pattern, which is prominent in patients seen in specialist teams, is usually the cause of flare-ups. GET sets a low baseline and some patients find it very difficult to maintain their activity levels at a low baseline. They may engage in activity cycling which is against the GET model of care. Therapy should be aimed at helping the patient resist the boom and bust activity cycling. This does not eliminate the role of GET altogether.

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...

 

[Simbindi]

I think that's called wilful blindness. Do they provide evidence of following up their patients? A study with data? If not it's a hollow claim.

They (Newcastle Foundation Trust) state this:

The committee is over emphasizing the ‘harm’ caused as reported in some of the qualitative evidence. Qualitative evidence is not a suitable tool to determine ‘harm’ from an intervention. Harm needs to be proved by objective tests.

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

 

[Jonathan Edwards]

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?

 

[Jonathan Edwards]

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.

 

[Kitty]

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.

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! )

 

[Jonathan Edwards]

Fairy nuff.

 

[Barry]

I am unclear how this fits in to the critique. I agree that illness and disability are typically assessed using subjective measures but that misses the point. The point is that fitness is NOT a measure of those so objective evidence of fitness does not indicate an improvement in the illness.

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.

 

[Barry]

"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?

 

[AknaMontes]

From memory, I think the Newcastle service [Edit: it was the NHS Newcastle Foundation Trust, not a specific clinic] said they had never seen a single patient harmed by GET/CBT (as per their delivery of it) in the 15 years they have been going! And they state every patient also has PEM, so I have to conclude they cannot be seeing even moderately affected patients.

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

 

[Snowdrop]

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.

 

[Solstice]

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.

 

[Peter T]

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.

 

[Solstice]

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.

 

[Peter T]

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?

 

[Tony]

Under extraordinary political pressure to deliver a particular result?
Reflexive circling of the institutional wagons?
Fallen for cult thinking?
Sheer incompetence?

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

 

[Tony]

Perhaps it’s simply that those behind RC endorsement of LP hold an opinion of PwME (sorry, CFS/ME) such that a pseudoscience behavioural psychobabble intervention like LP seems good to them.

Alternatively Phil Parker knows where the bodies are buried. (Eta metaphorically speaking)

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.

 

[Snowdrop]

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.