By David Tuller, DrPH
The draft of the new ME/CFS guidance from the UK’s National Institute for Health and Care Excellence is out–posted just after midnight, London time, on Tuesday, November 10. This is the headline: The draft represents a repudiation of the GET/CBT paradigm and the deconditioning hypothesis.
Here are key take-aways:
*Graded exercise therapy, other interventions based on the assumption that deconditioning plays a causal role, and the Lightning Process are explicitly NOT recommended.—they fall under a “do not offer” category.
*Cognitive behavior therapy as a cure or as a treatment for the illness itself is explicitly NOT recommended.
These positions have nuances. While GET is disavowed, the draft provides guidelines for physical maintenance and physical activity programs. While CBT-as-cure is out, the draft includes guidelines for providing CBT as adjunctive care for patients seeking psychological support and/or help managing their symptoms.
Many will object to some language and phrasing or find it to be ambiguous. Others will argue that proponents of GET and PACE-type CBT could cite passages selectively in an effort to bolster their claims. Certainly stakeholders on all sides will deconstruct the draft and submit their comments over the next six weeks. I’ll write more about the draft and subsequent developments in the next few months.
Not surprisingly, the Science Media Centre has rounded up some of the leading lights of the biopsychosocial ideological brigades to offer comment—Professor Sir Simon Wessely, Professor Michael Sharpe, Professor Trudie Chalder, Professor Alastair Miller and Professor Peter White. I’m not going to bother quoting any of their comments here. They bleat in protest at the content of the draft, once more citing their flawed body of research. .
The SMC did not present reaction from anyone supporting the NICE position, so it will be interesting to observe the UK coverage of the draft release. In the past, for the most part, opposition to the GET/CBT paradigm has not come from within the heart of the UK medical-academic-industrial complex–certainly not from a key agency like NICE. So this development presents the SMC with a particular challenge.
Given the balanced make-up of the NICE guidance committee, it would be hard to attribute the recommendations in this draft to the pernicious influence of a powerful lobby of unhinged, anti-science patients. But that argument could emerge during the comment period, as it emerged after the US Centers for Disease Control dropped the GET/CBT paradigm three years ago. The SMC helped perpetuate that impression in the CDC case, so it could try to disseminate it again this time around.
The biopsychosocial ideological brigades have regarded their hegemony over this domain as the natural state of affairs. The NICE draft indicates that they are no longer the dominant force in the field and no longer control the narrative. They likely find these circumstances to be unsettling, perhaps even outside their professional experience. Their SMC statements reflect some dismay, even panic, that their credibility now appears to be in question.
These folks will continue to protest. They will mount a vigorous response to the draft. Maybe the SMC will try to persuade one of its BFFs among the UK press corps to write articles supportive of their position. Perhaps, in the revision process, the guidance will shift bit back in their direction. Or perhaps ME/CFS patients and advocates will themselves successfully push for their own desired changes.
In any event, here’s where things stand: A carefully appointed committee has reviewed the evidence, and the members have approved a draft document. We can be sure that not everyone agrees with everything, and the final version published next spring could look very different. But this draft is unquestionably a big loss for the PACE investigators and their cabal.
Comments
14 responses to “NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure”
Definitely a step in the right direction (I’ve eaten my hat), but a bit light on the ‘B’/ skewed towards the ‘PS’. For example, I can’t see much about specifically testing for and excluding symptom-crossover conditions, which should be a starting point.
But I think this marks a significant change that will hopefully bring an end to the neglect/abuse of ME patients that has persisted for decades.
Let’s hope the committee will build up on what they’ve stated thus far in their draft of the guidelines.
The only way forward are guidelines that support the experience of the patient community with the disease. Not by pleasing the CBT/GET proponents and their flawed science.
BPS GET / CBT has always been the insurance lobby’s projection, likewise the first recourse of many who would shortsightedly seek to cut costs without achieving the primary objective of attending to the sick with compassion, relieving suffering and promoting healing where possible.
This outcome is appropriate and a great relief but I agree we will have to continue to be vigilant and keep moving things in the right direction.
Thanks for your part in helping this to happen David, lets keep going in the right direction.
Lets not forget we have not found a cure, we have just begun to get appropriate recognition and palliative care instead of abuse. It feels like victory but it is only the overturning of one source of humiliation heaped upon the injury this kind of illness brings. There is more to do.
Once robust diagnostic criteria are used the BPS research cannot be included in considerations about evidence based care.
The psychobabblers will not quietly crawl back under their rocks to lick their wounds. They are still protected by the establishment, as shown by the very recent award given to Sir Simon’s wife. In fact the stakes are higher than ever for the insurance industry with the prospect of many thousands of Long Covid sufferers presenting benefit claims potentially costing billions over the next few years.
I expect the insurance parasites will spend whatever it takes to delay the new guidelines for as long as possible.
I bet they double down and claim that this is a loss for science, brought about by a hysterical ME pressure group – a small minority that is preventing the voices of the main patient community from being heard.
And they will be interviewed on a science podcast, without anyone to rebut their propaganda.
But they will still lose, as they have in the past.
Their propaganda hose will now be turned up full blast – until they run out of water, which, like BS, is not in short supply.
But they will gradually lose ground.
I just noticed that the SMC release has been edited and they have added a response from Professor Simon Carding supporting the loss of GET and the move towards biomed research. Professor Carding is heading the RestoreME project at the Quadram funded by Invest In ME research.
The Guardian article is sticking to the “scientists” versus patients narrative. What a surprise.
Much of this improvement is due to all the investigative journalism and scientific commentary you’ve done David, along with the work of our advocates and patients. I noticed that the Perrin technique (osteopathy) also seems to be being advised against. And looks like Gupta and other ‘brain retraining’ programs were not addressed. “1.11.16 Do not offer people with ME/CFS:
therapies derived from osteopathy, lifecoaching and neurolinguistic programming (for example the Lightning Process).”
Psychological Research should never be labelled science. It is theoretical and often biased.
The Cabal will try to discredit this but they are desperate to save careers.
I noticed Phil from Lightening Process is going after Long Covid sufferers in Warsaw. He knows his goose is cooked in the UK.
Appreciate your work David. Thank you.
David,
Thanks for posting this. I was not aware… now I am.
As I have been trying to figure out Long Term CoVid, I find it (in my limited reading and experience) to be either based in organ damage and/or immune imbalance (with several different presentations.) That someone would treat these with GET/CBT is alarming.
I have much to learn still as apparently do many others. Immunology is so complex as to allow simple concepts of mind to explain the many outcomes and symptoms.
If scientists would just remove the concept of ‘Mind’ from their models and focus on ‘Brain’ centered models – I would suggest these misdirected controversies might just lift. I digress and perhaps distract.
Pretty sure I understand the issues here but I will have to read on. The fact that Placebo and Nocebo effects can be so great (skewing data by 30+%) clouds any finding based on symptom reports and tracking.
I’m trying to understand this. This helps me. Thanks.
Tim
The draft is of horrible quality, it keeps contradicting itself. It’s like six people are talking at the same time. It has no scientific base whatsoever, and of course it’s all about an imaginary illness. Guidance is needed for ME, and vastly different guidance is needed for CFS. This is neither. There exists no ‘ME/CFS’.
Agree with Guido. Dr Weir knows his stuff but otherwise, there is no ME specialist. And no one who knows the scientific evidence for pacing. Two RCTs. And every survey done to date as further support.
It’s wonderful news that GET and CBT have been ruled out. However brain rewiring (which is actually hypnosis) have shown it is beneficial for a number of physical diseases not just ME. In Brussels and Belgium hypnosis is often used in surgery instead of anaesthetic for major operations. The patient is fully awake but does not feel the pain as they have been put into a deeply relaxed state. Brain rewiring programmes offer techniques for symptom desensitisation. 75 percent of people with ME who do ANS rewire (A self hypnosis) programme recover. Hypnosis changes subconscious behaviours and patterns and can also have physical effects. I became ill as a toddler with ME and I have used brain rewiring techniques to recover (not because my illness is psychosomatic) but because there are helpful techniques that focus on the dysfunctional nervous system in ME, which also cause immune system suppression. I now lead a “Normal” life after a long 21 years of illness missing out on my childhood, teenage years and early adulthood. I dismissed all the brain rewiring techniques such as the LP all my life due to reading some information online where people who had never done the LP were bashing it. I wish I hadn’t as I could have been better much more quickly. I went from severe to full recovery in 6 months. I highly recommend brain Rewiring and all those I have recommended it to have also made huge health improvements and others have made a full recovery. Hypnosis is recommended by the NHS for all sorts of diseases but they don’t offer it, it’s not “placebo” but a highly researched field. Check out havard university’s view on it/Mayo clinic if you’re still unsure.