By David Tuller, DrPH
After much drama, the National Institute for Health and Care Excellence (NICE) has finally liberated its hijacked ME/CFS clinical guideline. As many know, in August the agency abruptly called off the planned publication of this new document, which was developed over four years. This decision occurred in the wake of fierce objections from members and allies of the graded exercise therapy/cognitive behavior therapy (GET/CBT) ideological brigades—those who now find themselves on the losing side of a paradigm shift.
In reviewing the relevant research, NICE assessed the quality of the main evidence for the effectiveness of GET and CBT for ME/CFS as of either “very low” or merely “low” quality. In contrast to NICE’s 2007 guidance for what it then called CFS/ME, the new version recommends against psychological and behavioral interventions positioned as curative rather than simply supportive, as well as against interventions based on the theories that patients’ symptoms were perpetuated by deconditioning and/or faulty illness beliefs.
Enabled by NICE’s previous guideline, many health care professionals have profited for years from their purported expertise in this purportedly “evidence-based” therapeutic strategy. Now the agency has changed course and determined this approach to be without merit, leaving these professionals in a bit of a lurch. As Brian Hughes, a psychology professor at the National University of Ireland, Galway, has noted, the history of this field has represented the triumph of “eminence-based” over “evidence-based” medicine. That era is hopefully ending.
Before and after the delay of the August publication date, some of those with reputational and other interests in maintaining the status quo expressed their discontent with the proposed new NICE guideline in blustery and embarrassing public statements. NICE followed up the publication delay with an announcement that it would hold a “round-table” discussion in October in order to allow various parties to air their concerns. That event, which occurred on Monday, was itself a source of much controversy because it represented a departure from NICE’s usual publication processes, among other issues.
Despite the anticipation of fireworks, the roundtable appears to have been rather anti-climactic and largely congenial, according to published comments from participants, with broad support for the version of the guideline produced by the appointed committee. Opponents of the guideline apparently failed to make any convincing arguments for their position. On Thursday, the agency made known that it was planning to publish the document today—as it did. With that, NICE dealt a severe blow to the authority and credibility of the cabal of medical grandees who concocted and promoted the GET/CBT paradigm for this illness in the first place, starting three decades ago.
So…NICE’s about-face is good news in a field where there often isn’t any. This event is also occurring six years to the week since Virology Blog published my 15,000-word investigation of the PACE trial. At that time, an authoritative repudiation of all the evidence for GET and CBT from a major UK agency would have been inconceivable.
But the two-month delay has been excruciating for the patient community. And no one should view publication of this improved guideline as a panacea or as something that will immediately improve the lives of patients, much less those who have already suffered for years under the prevailing but anti-scientific medical attitudes and beliefs, as a regular Virology Blog commenter (“Lady Shambles”) recently explained in response to a post.
Many others also argue that the new guideline will not prevent the same potentially harmful interventions from being renamed and rebranded in the guise of “supportive” rather than curative care. Invest in ME, which supports biomedical research, today issued a particularly scorching response to NICE about this and other issues raised by publication of the guideline.
It is hard to dispute the validity of many concerns raised by critics, including the tally of the damage caused by long-standing policies. Like any clinical guideline, this one is open to abuse by health care professionals who choose to ignore or misinterpret or mis-apply its recommendations. Nonetheless, as another patient noted on Facebook, the publication is a way to “bank some of the progress” that has been made in correcting the scientific narrative—and can serve as an impetus for seeking related changes in medical practice and research.
10 responses to “NICE Liberates New ME/CFS Guideline After Two-Month Hijacking Nightmare”
Such a pleasure to read of this historic moment. Momentous, yet agreeing that it was so unlikely to happen.
Our Knight in Shining Armour, Thank-you for the six years of excellent investigation and action. You have helped to create a space for new research and treatment to fill. May it arrive soon.
Three decades of harm, but still no apology, it seems. Hardly a ‘caring profession’, is it?
So many thoughts on this, but just two words for now. Thank you.
Thanks for your MANY contributions to showing the unbelievably bad pseudoscience of the ‘cabal’ – an apt name.
How they got away with publishing with such bad statistics is still galling.
Definitely a historic moment but so painfully executed.
The usual suspects are not happy and looking at trying an around of GET. I’d like to know who complaints can be made to if practitioners are still offering GET 2.0? As a community we will need to be monitoring this closely.
Thank you always for the work you’ve done helping us.
“ME/CFS: Exercise goals should be set by patients and not driven by treatment plan, says NICE”
“NICE understates role of exercise and CBT in managing ME/CFS, say medical leaders”
I congratulate NICE on their very smooth Bait-and-Switch routine. Patient advocates spent years and thousands of person-hours working on the new guidance in the belief that the guidance committee’s work would be published unmolested.
At the last minute NICE tossed all their carefully constructed procedures and instruction manuals in order to dilute the message that ME patients have exertion intolerance. They did it behind closed doors with their old pals in the medical establishment, which still hates us.
If they water down the cautions against exercise a bit more, they could call it “homeopathic exercise”. I bet Phil Parker could sell that, with just a little help from the Royal Colleges.
ME patients need an apology now, so why do doctors find it so difficult to apologize? (https://theconversation.com/why-is-it-so-hard-for-your-doctor-to-apologize-123337)
In 2015, Dr Michael Devlin, the Head of Professional Standards and Liaison at the Royal College of Physicians, indicated that the College’s advice to doctors was, (and had been for a long time), that they should not delay in apologizing when they discover that things have gone wrong -https://www.theguardian.com/society/2015/jun/29/nhs-staff-sorry-patients-medical-blunders . Don’t they believe that any more?
Given that NICE seems to have recognized the harm that the previous medical stance caused to at least some ME patients, then why do we get this -https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs sorry (or un-sorry) statement from the Royal College of Physicians, instead of an apology?
It goes without saying that the ME community is extremely grateful to David for his part in bringing about the change to the NICE guideline, but, as well as thanks, he must surely also deserve unreserved apologies from Reuters and the other news outlets that put out those unforgettable pieces in March 2019? We should be demanding those apologies now, I think.
For those who don’t know how to apologize, it’s quite simple, just learn from this – https://www.youtube.com/watch?v=KUDjRZ30SNo and, of course, from your mistakes.
The message seems very clear to me. The Royal Colleges do not agree with the NICE guidelines and will ignore them, per their paragraph below. Everyone knows that the UK’s historic GET/CBT paradigm is about being cured by addressing ‘de-conditioning’ and the ‘abnormal illness beliefs’. It’s well documented. Protagonists like Peter White say they don’t want to be involved in ME/CFS, but they don’t seem to be able to leave it alone. Tragically, for patients in the UK, it seems that nothing will change.
When commissioning services we would reiterate that:
Graded Exercise Therapy as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.
CBT remains a valuable treatment for alleviating symptoms in ME/CFS and services should ensure patients have access to this and other psychological therapies.
I thank all who have contributed.
I am concerned about a possible push to locate hysteria in the brain. Diseases can continue to be “treated” with talk therapies, maybe exercise, antidepressants; and conflated with “just” OCD or so.
This would insult, harm, and exploit pwocd, pwme, and science all at once. What they would do is find an artifactual or downstream correlation on a brain scan. Or make one up. Making stuff up is their special expertise.
After all, deconditioning was never an evidenced hypothesis. Brain scans sound scientific.
Apologies do have their uses. But they can also be a risk. Sorry, OK phew, all better now. I am adamantly opposed to truth and reconciliation stuff. That can bypass justice. There has not been one iota of mass-level justice.
I think a LOT of perspective is needed. Perpetrators did not slip on a banana peel. Some of them orchestrated and continue a mass human rights violation. [Completely literally: acts done as part of a widespread and systematic attack on a civilian population, with [for some perpetrators] knowledge of the attack.] It was not merely an ideological oopsie. To me, that is a key point. Not an ideological oopsie.
If you DO think it was [and is] merely an ideological oopsie, then you must possibly throw eugenics into that category also. And thus Action T4. It should become obvious that pseudoscience does not exonerate mass HR violation.
One apology I need: after due process and lots of discovery, an ugly snarl from behind bars. Nothing else will truly stop, not merely whack a mole, the expanding attack in reasonable time. The good news is, it will.
Thank you for bringing this up and also giving us the latest news in this area. I would really like that on the way of each person there are those people who are really professionals in their field. Or at least they can take a sober look at the results of their work and their mistakes. There is no one who would not be wrong, this also applies to work. But it is also important to notice these errors and try to fix them, which I did not notice here, unfortunately. I hope that this situation will change soon.