NICE ME/CFS guideline - draft published for consultation - 10th November 2020

quote:
"The draft from November calls for a radical change in the treatment strategy, which has caused a furore among some clinicians and professionals in the field. They have criticized the change for not being adopted on a scientific basis. Conversely, the draft has aroused great joy among some ME patients and organizations around the world, who for a number of years have fought for this very change."

How about some small edits?

"The draft from November calls for a radical change in the treatment strategy, which has caused a furore among some clinicians and professionals in the field. They have criticized the change for not being adopted on a scientific basis. Conversely, the same professionals have been criticized for years by colleagues and patients for applying low scientific standards to their professional practice and denying serious flaws in the research they produced and applied in the field.

The draft has aroused great relief among clinicians, scientists and ME patient organizations around the world, who for a number of years have fought for a methodologically sound evaluation of the evidence base."

 

I can appreciate that existing ME/CFS clinics will have lot of inertia in terms of clinical approach, and that cutting them loose and starting again might seem like a good thing. In an ideal world that may be right, but we have to pragmatically accept the fact that things are far from ideal.

If the plug were pulled on existing clinics, that would be a "wonderful" opportunity for the powers that be to procrastinate about setting new ones up. And you could be sure the BPS folk would be very influential in supporting such procrastination. They would not have to argue that the new treatments were "wrong", only whisper in the relevant ears that it would be far too expensive. They would find ways to block at every turn I suspect, especially as they would inevitably have a huge chip on their collective shoulder.

There is actually a major aspect about the existing clinics that is incredibly favourable, and is that they provide an already existing infrastructure for providing treatment, and for vectoring patients towards; that is a lot of infrastructure when the detail is gone into I'm sure. This pre-existing benefit is not to be underestimated.

The key thing that needs to change, and also is not to be underestimated, is the treatment that is offered, and having the correctly trained clinicians to provide it. I appreciate there will be infrastructure issues involved here too, but I think that is the lesser of two evils. Better to have to change what already exists, than risk losing what already exists, and it not being replaced with anything of any worth at all.

True it would be a real challenge to change what already exists ... maybe, hopefully, that can be another major advocacy that S4ME and others will need to get involved with. But a bit like engineering, it can be encouraging if the only reason you advanced to fixing problem Y, is because fixing problem X allowed you to.

 

I'm not from the UK haven't been involved in any preparation for the final NICE guideline release but I do hope that UK patient organizations are preparing for the ensuing debate in the media.

I hope they are contacting scientists like Brian Hughes, David Tuller, Jonathan Edwards, Caroline Wilshire, and others to prepare comments on the guideline in advance.

 

If the new guideline is more or less as we hope, then I think it will be the first time the BPS clique, and their support structure, will have been seriously knocked back, and a significant component of their self-entitlement trimmed hard back. If this guideline truly is what we hope, then it will be something of a watershed moment. A bit like Churchill's "end of the beginning" statement after the Battle of Britain in 1940. A long way still to go, but a major step up along the way.

 

Content Warning: discussing some nasty theories surrounding CBT. If you're not in the mood, just skip.

I think I can say something about that. I'm researching the earliest years of the Wessely School (which is also why I on here way less than I had previously planned and anticipated when I joined) and its advising of CBT as a treatment. I have been puzzled by how GET is mentioned separate from CBT as it is basically a therapeutic tautology : GET is the B in CBT, the changing of maladapted behaviour through Operant Conditioning principles, in this case the supposed unwarranted "abnormal illness behaviour" of ME patients. ("Abnormal illnes behaviour" btw. is just a term for hypochondria/hysteria.)

In the theoretical model it is avoidance behaviour that gets in the way of the patients behaving like they should: like they're not ill. The Wessely School treats CFS like hypochondria/hysteria in a new dress. According to Operant Conditioning principles underlying BT and CBT of changing unwanted behaviour in the desired direction, there are 4 types of reïnforcers (Source: "Cognitive Behaviour Therapy for psychiatric problems: a practical guide" by Hawton, Salkovskis, Kirk and Clark, published at the time Hawton and Sharpe started to apply a CBM on ME patients. ME is not specifically mentioned in the book. Hypochondria and hysteria are, as are a lot of descriptions that are very familiar.)

• Presented Positive: wanted behaviour occurs more frequent b/c of positive results. ME theory: gradually doing more means you can do more, you'll notice that you càn do stuff, hoorah!*.
• Omitted Negative: wanted behaviour occurs more frequent b/c the expected negative effect doesn't occur. ME theory: gradually doing more means you'll discover that you won't get symptoms from it.*
• Presented negative: Unwanted behaviour decreases b/c it is followed by an aversive event (punishment.) Applied in CBT's sister therapy, Aversion Therapy with electroshocks (BT) applied to gay and trans people. ME theory: none specifically. I suspect it might have been applied if AT hadn't built such a deserved public bad rep. as being damaging and unethical.
• Omitted Negative: Unwanted behaviour decreases because the reward for it doesn't occur. ME theory: taking away benefits and sympathy from surroundings means there are no cushy treats as an incentive to keep behaving ill.

As you see, graded exercise is the first two reïnforcers of BT. *Of course this all falls to pieces when ME patients unsurprisingly deteriorate from expanding their level of activity beyond their physical limit, so they shoved in some bs about patients failing because they're being too fussy about normal aches and pains after exercise and therefore stop pushing through to the other side , where the magic supposedly will happen.

See also for example of Sharpe et al, 1992 ("The psychological treatment of patients with functional somatic symptoms: a practical guide")

"Behavioural change is best achieved in a gradual fashion. Sudden changes often produce severe exacerbation of symptoms, avoidance of further efforts and demoraliazation. In order to plan graded increases in activities, a baseline of current behaviour is first established and the discrepancy between desired goals and current functioning identified. The difference can then be broken down into manageable ‘subgoals’ of graded difficulty. The patient is warned that each increase in previously avoided activity is likely to result in a transient increase in symptoms. The behaviour is practised daily until it can be accomplished with ease. Only then is the subgoal increased."

Again a demonstration that graded increase in activity is the Behavioural aspect of CBT.


For the BPS crew, losing GET seems extremely problematic to me, as basically their B falls off. They'd be stuck with CT, and thàt only seemed to work (I have heard that that is contested now too, though no sources or study into it) because in more severe cases BT could be added as a component of the therapy. Besides, with reaffirmation of old research finds regarding e.g. brain hypoperfusion and mitochondrial dysfunction and new ones like dysautomnia-related things, it's kinda hard to claim "I am ill" a false conviction and to base your whole treatment on changing that "belief" with the expectation that that leads to improvement (as that is CT).

I don't know when GET was added as a separate-seeming thing, as I haven't looked into that (so much on my plate, so little spoons, ack!), but for the BPS crew themselves it isn't something separate.

And that concludes another mini lecture. Have an awap day everyone.
And thank you for all your input in this thread, I really enjoyed reading your views and information. (But reading on my phone offline, so no active likes.)

 

Absolutely this ^

The only thing I would add to your post, and to the points raised by Jonathan Edwards, is that the situation is especially critical given the staffing crisis in the NHS - 84,000 fte vacancies in February 2021 https://www.kingsfund.org.uk/projects/positions/nhs-workforce . The current CFS units at least allow for 'specialist diagnosis' rather than ad hoc GP choice of what to list on data returns - this is important for new patients when in comes to dealing with benefits - specialist diagnosis carries weight !

If the Government gets its way on reforms of the CCGs, then any service across the NHS in England which can't be easily defended on the basis of need will likely be lost as the new Commissioning agencies flex their muscles, and the chance of getting wholly new services will be buried under competing staffing and funding demands, and the need to deal with a 6 million patient, pandemic inflated waiting list.

 

I've been thinking about the framing, especially as it relates to some reporting a "dramatic turn". I think that the most accurate framing is that the 2007 guidelines should never have been published as they were, biased and without credible evidence. Everything else is second to that. There were only a handful of small underwhelming trials, it never should have been considered valid evidence to begin with. They jumped the gun, assumed it was in the bag from biased preliminary evidence alone. That was the mistake, putting out a product that barely reached the alpha stage.

Not because anyone disagrees with them, but because there was no supportive evidence, which has been proven by the hundreds more similar trials since. It was premature and ideologically motivated, bypassing evidence and a formal process.

 

Unfortunately, this is not the case in many of the clinics. Few have a medical doctor as part of the team, so any diagnosis given would be from a therapist or psychologist. Additionally, several of the previous specialist CFS/ME services have now merged with BPS orientated pain and general fatigue clinics.

The other issue is that many of these clinics only offer a short, time limited service, so most PWME would be discharged back to the GP within 6 months usually, maybe 12 months in some clinics. Again, few of these clinics offer any domiciliary services for the more severely affected patients (even those patients who consider themselves 'moderate' are not able to manage the travel and demands of attending such clinics). So we are still going to be left with the problem that there are unlikely to be any services for either long term patients (surely this is the majority of us) or the most severely affected PWME.

 

I don’t know how widespread this is and it may be out of date now, but the Sheffield CFS/ME did not accept referrals unless a consultant had already given the diagnosis.

When I was referred to the Sheffield service, a considerable number of years after my original diagnosis (15 years plus) and previously had my diagnosis re-confirmed at previous key stages (eg ill health retirement), I still had to have all the standard medical tests done again and be seen again by an infectious disease consultant to be referred to the specialist service.

Many UK specialist services are only staffed by therapists (physiotherapist and occupational therapists) so are not able to provide a formal medical diagnosis.

[sorry cross posted with @Simbindi ]

 

I understand it's better for the specialist services to remain open and hopefully adapt in terms of infrastructure etc. The thing i find really hard though, is that these places are full of so many memories of traumatic moments and encounters with so called specialists. (Some of whom were just daft and blindly following what they'd been told, many of whom appeared sadistic and cruel.) I think it'll take a while for me to trust any of these specialist services, but i really hope one day i'll be able to...

 

Great minds think alike....

 

If there are no 'good' options, the question becomes what is the 'least worst' ?

In the current UK position holding on to the imperfect with the intention to seek improvement would seem more achievable than slash & burn and start from new. Until now the commissioning bodies, and NHS strategy planners have been able to hold to the GET/CBT model as the objective minimum to satisfy demand - i.e the least they can get away with. With (as we hope) the revised NICE guideline in effect, if not explicitly, acknowledging that ME/CFS patients have yet again been failed by the NHS there exists at least a moral ground for patients and patient orgs to argue for something better to be built on existing units and for that improved model rolled out to have appropriate geographic spread.

The ask will need to be realistic given current NHS constraints, but best practice as it exists sporadically should be the minimum demand for a consistent universal standard across all commissioning areas. This ought to be relatively easy to articulate and serve as a good test for those who want co-ordinated action in the UK.

 

Is there a specified time on Wednesday the new guideline is going to be published? If so, will that be the same time that the embargo is going to be lifted?

 

Merged thread

Cambridge ME patients fear 'dirty tricks' at NICE will halt vital review of treatment guidelines
A game-changer for the condition review is due to be published next week

https://www.cambridge-news.co.uk/news/cambridge-news/cambridge-me-patients-dirty-tricks-21290047

The individual comments re GET and its consequences are well worth reading. Lots of ads but if you can cope with reading the content despite them, then it is worthwhile.

 

I don't think the article is very helpful as a lot of it preempts the publication on the 18th; ie it says that patients fear that NICE will stop the review, and one of them has set up a petition already

 

I have no specific knowledge re the NICE guidelines, though usually such embargoes end in the very early hours of the morning to allow the first editions of the morning papers to include relevant news stories.

 

As I said in my post, the comments of people regarding GET are particularly interesting. And I think it interesting it being a major news story at local level, even if some folk are a bit off the mark.

 

There's a comment in the comment section of this article that says,:

"Genuine question, not an opinion.

In the abscence of any consistent physiological cause of ME, as opposed to the undoubted physiological affects, why are ME sufferers so adamant that there is not a mental illness aspect to their condition?

Mental illness is not a cause for shame and it doesn't mean the answer is " to pull yourself together"."

I think this is a common misunderstanding and, tbh, I can see why people with no experience of ME might jump to this conclusion - particularly given that it is a narrative that has been encouraged by high profile psychs. There are some very patient ME patients who have replied to the comment above. It's annoying to have to keep explaining ourselves but I do think it's useful to know what the common misconceptions are so that we can address them. I expect there will be many people thinking along these lines when the guidelines come out. I find I have to be very careful how I word things so that I don't sound as though a mental illness diagnosis is something I want to avoid because of shame or stigma, which couldn't be further from the truth.

 

Absolutely. Specific criticism of CBT/GET including sharing personal stories of the harm it has done is definitely most effective.

Our message should be 'CBT/GET is harmful' rather than 'ME is a physical disease'.