By David Tuller, DrPH
For many years, campaigners for psycho-behavioral interventions for ME/CFS have accused patients who objected to the research as being anti-scientific zealots. It was always a ridiculous charge, but developments this week have made it clear, if there was any doubt, that these entitled bullies are the ones immune to the actual evidence.
The National Institute for Health and Care Excellence (NICE), the British organization that develops clinical guidelines, began the process of revising its outdated 2007 ME/CFS recommendations four years ago. It selected an excruciatingly balanced committee, with representatives from various sides of the debate, including several patients. It would not be possible to argue convincingly that the process was stacked against the advocates of graded exercise therapy and cognitive behavior therapy, the two standard treatments.
The final product, which rejected the 2007 recommendations, was approved by everyone in the NICE hierarchy who needed to approve it. And yet on Tuesday NICE announced that it was temporarily suspending the publication planned for the following day in order to consult with powerful medical forces opposing change. In the process, it defended the integrity of the “rigorous” process undertaken to produce the new evidence-based document.
The events have rocked the British medical establishment and triggered widespread domestic news coverage. (In the US, no one seemed to notice.) The conflict has led to a stand-off between rival centers of authority—NICE, whose guidelines wield significant influence on clinical practice, and entrenched physicians organizations whose members have reputational and financial interests at stake in maintaining the status quo. These champions of psychosomatic explanations for the devastating ME/CFS symptoms have long claimed the evidence supports their case, but they seem at a loss when that claim is clearly debunked.
For example, a BBC article about the NICE debacle includes some laughable statements from the leader of one of the royal colleges opposed to the new guidelines. (Despite their august names, the royal colleges are essentially trade associations to promote the interests of the various medical specialties.) Here are the comments from Dr Andrew Goddard, president of the Royal College of Physicians, as reported by the BBC:
“We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.
“There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.
“Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.
“We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication.”
Perhaps this sort of rambling might have sufficed in the past. At this point, the evidence for the GET/CBT approach has been effectively exposed as of “very low” or “low” quality. Dr Goddard seems to be flailing about in search of a valid point in the face of this unaccustomed public smackdown. Let’s parse his statement.
Dr Goddard indicates that there is “reasonable evidence” that GET “helps” a subset of ME/CFS How is that subset defined, and how is “help” defined, and why does this claim differ from past statements that GET does not just “help” patients but can actually cure the illness? Has Dr Goddard provided this robust evidence of success to NICE? If so, then NICE obviously interpreted the information differently.
Dr Goddard also acknowledges that GET is “not without risk.” This seems to be a new admission from this quarter, since the standard line has always been that GET is proven to be safe as well as effective. Can Dr Goddard distinguish beforehand which patients are at risk of harm? If not, how are patients at risk of harm protected from actual harm?
The fact that the “experts” mentioned multiple times by Dr Goddard “strongly” disagree with NICE’s conclusion does not mean their views should be prioritized–especially absent any trustworthy research to back their assertions. For example, where is the evidence that ME/CFS patients can benefit from what Dr Goddard calls “specialist individualized rehabilitation”?
It is worth noting that this same cohort of “experts” keeps repeating similar things about Long COVID. But how do these people know what they claim to know? Perhaps when Dr Goddard refers to treatments that “we know to have significantly benefited many patients,” he is speaking about his own personal observations and those of his medical colleagues—or rather, their interpretations of their observations. Of course, the whole point of conducting research reviews and developing clinical guidelines is to help the domain of patient care escape the tyranny of physicians’ anecdotal accounts of what they believe does and does not work. Blood-letting was also known to be effective back in the day.
**********
The Times leads the pack in accurate coverage
For years, members of this large group of misguided experts have vilified patients who object to their science and their treatments. In this effort, they have had willing enablers in the domestic press corps, who have in the past swallowed wholesale the anti-patient propaganda disseminated by the Science Media Centre and others involved in this field.
In contrast, The Times has emerged as perhaps the most credible mainstream UK source, thanks to the careful reporting of science editor Tom Whipple and, most recently, senior writer Sean O’Neill. Unlike their colleagues at other news organizations, these two men have listened to patients and to others presenting an accurate counterweight to the psychosomatic narrative. Three years ago, Whipple wrote a story about Virology Blog’s open letter to The Lancet, which slammed the PACE trial’s “unacceptable methodological lapses” and was signed by more than 100 experts, ten members of Parliament, and dozens of patient organizations. More people likely saw that article’s headline–“Call for review of ‘flawed’ ME research in Lancet letter”–then have ever heard of Virology Blog.
Most recently, in covering the NICE saga, O’Neill has pushed back at public misrepresentations of events. Last week, a BMJ news article, after revealing that three committee members had resigned, suggested that the NICE committee was excessively influenced by patients and that the approved guidelines were inconsistent with the evidence. O’Neill fact-checked the BMJ claims in a piece the following day. Here are the relevant paragraphs:
“The BMJ, which first reported the resignations, said there was ‘an unusually high number of patient representatives [on the NICE committee] prompting suggestions this may have led to more weight being place [sic] on patient views than on published scientific evidence.’
However, only five of the 21 committee members were patient representatives, and the lengthy draft report showed clinical research advocating the use of exercise therapy and CBT had been subjected to intensive review and was judged to be of ‘low’ or ‘very low’ quality.”
(On Thursday, The Times also ran this piece by O’Neill on links between ME/CFS and Long COVID.)
Given the impasse over the ME/CFS guidelines, NICE executives and royal college grandees will presumably be hashing things out in a dramatic show-down. Whatever decision is reached would be subject to judicial review. But NICE has already documented, after an intensive and lengthy process, that the evidence for the standard treatments cannot withstand scrutiny. If the agency backs down and waters down its final ME/CFS recommendations because of pushback from campaigners and entrenched medical interests, it will destroy its credibility as an independent arbiter of medical information.
Comments
31 responses to “NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines”
Perhaps Jonathan Van-Tam (our Deputy Chief Medical Officer aka ‘Mr Metaphor’-https://www.youtube.com/watch?v=lQZAylGeesg) would like to explain why ME patients have apparently once again been thrown onto the railway tracks to be mown down by the BPS Express?
It seems that I ate my hat too soon -https://www.virology.ws/2020/11/10/trial-by-error-nice-draft-rejects-get-lightning-process-and-cbt-as-cure/ – I should have realized that the draft NICE guideline was too good to be true, (even though it should have been a whole lot better).
This tweet by David Marks sums up the situation for me – https://twitter.com/newhealthpsych/status/1427658379380547585 – but it’s not just NICE that can’t be trusted again, it’s the whole of UK medicine as far as I’m concerned. Those physicians organizations/royal colleges have members who are ordinary doctors, our doctors. If they can’t see how wrong this is and object in the strongest terms to their leaders on behalf of their patients, then, in my book, they’re not the decent and trustworthy saints and heroes that they’re purported to be, but jailers and persecutors, and they all bring medicine into disrepute. Aren’t they paid by the UK taxpayer to help and care for their patients, not to dance to their medical overlords’ tune? Fake words of sympathy don’t cut it anymore. Why would anyone want to divulge their health concerns to phoney/ill-informed/self-serving/two-faced people?
Thank you David.
While in the US you have not heard much about the NICE guidelines, in Canada we have been under their influences, as physicians prefer to turn to the opinion of their British colleagues over their American colleagues due to the similarity of the health care systems.
These guidelines are not likely to change our day to day with an endless disease that has suffered from severe underfunding for research, but it is hoped that the guidelines could crack the door of the vault that has been fiercely guarded for decades.
As I said somewhere else, we the patients from around the world have been held hostages by this group of British flat earth doctors, and their sheep herd.
Thank you for lay it all out.
Thank you again David for another incisive commentary on the Orwellian events in the world of ME/cfs.
It may be of interest to some of your readers to take a look at the Freedom of Information requests which have recently been made to NICE, in an attempt to find out who is behind this latest attempt to derail the publication of the revised clinical guideline and how NICE responded to their overtures.
https://www.whatdotheyknow.com/body/nice
It seems that The Royal College of Paediatrics and Child Health (RCPCH) is ‘very pleased’ that NICE has hit the pause button -https://www.pulsetoday.co.uk/news/clinical-areas/neurology/nice-pauses-publication-of-unsupported-chronic-fatigue-guideline/ . What a relief that my kids are all grown up.
Thank you so much for this piece, David. I just wanted to add that these individuals are bullies in their clinics too – I wonder how many patients they assume to have been helped have really quietly absented themselves. As a parent carer I know the “nod and smile and leave” technique to protect my child, especially when they allude/threaten “safeguarding” if your sick child isn’t improving. That may be marked by the clinic erroneously as “helped and discharged” and form part of the unsubstantiated anecdotal statements put forward by Goddard et at. It must be stopped.
” … the whole point of conducting research reviews and developing clinical guidelines is to help the domain of patient care escape the tyranny of physicians’ anecdotal accounts of what they believe does and does not work. Blood-letting was also known to be effective back in the day.”
Touchè, David
The decision NICE has made has far reaching consequences for patients, for science and for the own institute.
Patients have been confronted with a very poor and damaging NICE-guideline since 2007. That guideline is based on hardly any scientific underpinning at all. Despite that, it recommends the detrimental treatments CBT/GET and GET. As NICE itself found according to the draft guideline, the scientific base for these treatments is actually non-existent. As stated by NICE the quality of the evidence for these treatments is low to mainly very low.
As a result of this decision this obsolete and damaging guideline will be followed even longer. Patients will still be confronted with these treatments. For your information: our daughter has deteriorated after undergoing CBT in combination with GET and is bedbound for six years now.
According to its message NICE has used its usual rigorous methodology and process. The question is what will be accomplished by talking to professionals who don’t agree on the outcomes of that process. Will NICE consider compromises? That would be inevitably contradictionary to the evidence NICE rigorously evaluated. By not adhering to the scientific considerations towards the low to very low quality of the evidence NICE will degrade the importance of science as a result of its decision. Apparantly eminence prevails over evidence.
The mere fact that NICE decided to pause the publication (again) based on the very feable argumentation that a number of professionals will not accept the guideline and the fact that they are going to negotiate despite the rigorous methodology and process, undermines the position of NICE.
Once a guideline has been established along this rigorous process and methodology, professionals have an obligation to follow those guidelines. You don’t have to negotiate about that. That is what guidelines are for.
The credibility, trustworthiness and independent position of NICE have been damaged severely. That is not only the case in the United Kingdom. You can be assured that the whole world is following this process.
It will be interesting to see if the wider membership of the Royal Colleges are as happy with this anti science stance as their leadership which has been heavily influenced by the authors, inventors and promotors of GET/CBT.
The leadership of the Royal College of Physicians and the Royal College of Paediatricians & Child Health have so far come out publicly in favour of NICE’s significant breach of its own policies and procedures, and it might not be surprising if they are joined by the Royal College of Psychiatrists and maybe even the Royal College of GPs, but these august bodies as well as containing individuals (and their relations) whose careers and credibility are heavily invested in GET/CBT empire building: in ME/CFS, in the pseudo psychiatric diagnosis of MUS, in the so called functional disorders and now in Long Covid, also contain some genuine scientists who longterm will see through the posturing of the partisan few.
These clinicians and researchers have failed to win the argument on the science with their contributions to the NICE consultation process, which is not surprising given the superficiality of their arguments in print and recently in the press, but they now seek to circumvent the entire process by posturing and by back door political pressure.
Let’s hope the current furore is sufficiently loud to expose the stranglehold of this eminent but blinkered few. Certainly we are at the point where it has become a fight to the death between the careers of a few self interested diehards and the lives (both metaphorically and for some literally) of millions of their patients in these wider diagnostic categories, not just the few hundred thousand or so of us already diagnosed with ME/CFS, but also the potentially endless grouping of MUS and the rapidly increasing numbers of people with Long Covid that will ultimately fit the diagnostic criteria for ME/CFS. Certainly no compromise can be possible on the issue of GET, the efficacy of which is unsupported by the experimental data and which extensive surveys indicate may be harmful to between 50% and some 90% of people with ME/CFS.
Once this stranglehold has been broken we hopefully will see doctors and specialist services responding not just to the one generic symptom of chronic fatigue but also to the disease specific symptoms of their patients: exercise intolerance and post exertional malaise, orthostatic intolerance, immune system anomalies and disturbance of mitochondrial level energy metabolism to mention but a few.
Following on from my second comment above – there’s a comment in response to the Pulse piece -https://www.pulsetoday.co.uk/news/clinical-areas/neurology/nice-pauses-publication-of-unsupported-chronic-fatigue-guideline/ by a GP, I assume, who indicates that he’d ‘genuinely’ like to know what harms graded exercise therapy causes. It would be great if a doctor/GP could reach out to him in some way and explain.
This morning I received this answer from the chief executive of NICE.
Lou
Many thanks for getting in touch and for raising your concerns about the guideline publication pause. I completely understand how frustrating this will feel. It was not a decision taken lightly, and it was taken with the absolute aim of ensuring patients get the support they need. For this, professional support is vital.
We will be working closely with patient groups in taking this forwards, and will be issuing further information shortly.
With kind regards,
Gill
Professor Gillian Leng CBE
Chief Executive
National Institute for Health and Care Excellence
2 Redman Place I London I E20 1JQ| United Kingdom
Tel: 44 (0)7811 209586
Web: http://nice.org.uk
And this is my answer in return
Dear professor Leng
Thank you for your reaction
The professional support patients need has been denied to them for many years as a result of the psychosomatic approach. As I wrote CBT/GET made the situation of my daughter worse.
It was in the power of NICE to end this malpractise but you have let this opportunity slip away.
The only thing you can reasonably do is publish this guideline and not negotiate and compromise. I do hope that you will reconsider your decision.
Yours sincerely
Lou Corsius
Thank you David, and thank you Sean O’Neill (should you be reading this) for steering a path built on the truth rather than the lies of the BPS cabal. People with ME don’t require you to ‘spin’ anything in our favour, the truth speaks for itself and for us without the need for distortion. We very genuinely appreciate your independence.
I agree with all the comments thus far, but I too, like Helen and Fiona picked out this sentence as resonating for me in terms of that spurious communication to the BBC from Andrew Goddard: “Of course, the whole point of conducting research reviews and developing clinical guidelines is to help the domain of patient care escape the tyranny of physicians’ anecdotal accounts of what they believe does and does not work.”
I don’t think this aspect of patient negotiations with their clinicians is talked about enough. I have availed myself of the ‘nod and smile and leave’ manoeuvre many (possibly hundreds) of times over the half-century course of my disease.
Even when severely iatrogenically damaged by a process started by the lead of the Wales ‘CFS’ service back in 2004 I didn’t get redress. After a whole year of increasingly absurd and abusive behaviour and treatment suggestions from different clinicians ( who mostly seemed to know each other and passed me from pillar to post like a trafficked money making machine) & which only made me more and more ill (some side effects of this ‘care’ linger still) my husband and I chose to quietly walk away from it all. Our GP was aware of how we intended to progress (mainly by having to wean umpteen psyche meds that had been Rx *entirely* erroneously) using the wonderful manual for safe tapers written by the late Prof Heather Ashton. Those weans were unmitigated hell. But what we haven’t (yet) done is make a formal complaint, although we might still choose to do so. But by virtue of not making a complaint, none of those clinicians happily taking money for their private services as if they were indulging in some sort of medical pyramid scheme, are necessarily aware that not only did they not help, they harmed me very badly indeed. In their silly little heads they can write me off as a success I suspect because, of course, I never ‘went back’.. why would I?
This little tale is an anecdote, one which is entirely truthful but an anecdote nevertheless. It has no more ‘clout’ wrt a NICE Guideline than Goddard’s assertions do. But given the collected ‘evidence’ of 4 examples (in this comments section alone) of harm or potential harm to patients by clinicians who were and are devotees of the Wessely School, we can at the very least imply a trend can’t we? And the trend can be summed up in two ways: i) BPS Model clinicians can and do cause harm ii) patients avoid those clinicians and / or remove themselves from their clinics allowing clinicians to make the enormous leap that a ‘no show’ equals a ‘success’.
The bottom line is that the Wessley School model is incredibly harmful in all sorts of ways, not only in relation to GET and CBT. NICE’ dereliction of duty on 17th August 2021, under pressure from ’eminence based’ lobbying draws a thick red line in the sand. The deaths that occur in this population from this point can be laid at the door of NICE, if it continues to collude, and the Royal Colleges. Think of it like a thick red line of blood. There’s been enough bloodshed in this community already. This Establishment-directed abuse must stop.
Have your say on what to do next on the ME Association web site. Please contact them as your ideas will be much appreciated
Thanks
Ann
NICE say they will be working with patient groups taking this forward, but on Tuesday this week NICE breached its own procedures and policies and breached its implicit contract with its stakeholders without any adequate explanation of their grounds for doing so.
Patient groups have put a tremendous amount of work into supporting the guideline review process, much of which has been undertaken by very ill people at risk of temporary or even permanent harm to their own health. What assurances can NICE give that they will not succumb to further political pressure and inflict further betrayal on a vulnerable patient group moving forward?
@Lou Corsious
In your comment above you posted a reply from NICE which included this sentence:
“It was not a decision taken lightly, and it was taken with the absolute aim of ensuring patients get the support they need. For this, professional support is vital.”
Implicit in that reply I ‘hear’ NICE trying to wrangle recalcitrant clinicians (headed as we know by the Royal Colleges) into providing the care that the GDG has arrived at. Strangely, as a long term patient with ME, I have regularly been refused options which have a theoretical basis of helping me on the basis that they aren’t in the Guideline. In other words although a NICE *Guideline* implies it can’t be mandated, we all know that doctors fear moving outside its limitations. In other words, regardless of what a doctor might *wish* to do they refuse on the basis of the Guideline, it’s a mandate in all but words.
Obviously this poses huge problems to the BPS model cabal for those very reasons. But unless the tail really is wagging the dog the answer to this is simple: NICE publish and BPS-style clinicians either work to that Guideline or the face the same potential problems as do all clinicians should they want to follow their own diagnostic and treatment pathways. NICE does not need to ‘wrangle’, they just need to publish. It is that simple. They have the power. Too much power if you ask me, but they do have all the power they need to proceed. The rule of the playground should apply: the executive team need to pull up their big boy pants and stand up to the bullies.
Well said! It is finally revealed that doctors promoting CBT and GET are the anti-science group… having had hundreds of trials to prove their therapies work, and failed on every objective measure – only managing to humiliate patients into saying the feel better.
Talking of that NICE executive team, Lady Shambles, I saw one of the members once as a patient. As doctors go, I was quite impressed. They were not at all patronizing, clearly explained my options, spoke to me on their level as an educated person – all that you’d want really. When I’ve been talking to others about good and bad doctors, as a lot of us do, I’ve given them as an example of a good one, making the point that they’re not all bad. Now I feel betrayed and that I really can’t trust any UK doctor ever again. And I don’t even have ME. I can’t imagine how ME patients must feel.
@CT: You said
“Now I feel betrayed and that I really can’t trust any UK doctor ever again. And I don’t even have ME. I can’t imagine how ME patients must feel.”
I think it’s fair to say all patients with ME have almost universal distrust of doctors. Even those very few doctors who seem to be behaving reasonably aren’t free from our distrust as we know only too well how manipulative clinicians can be, often presenting (as you have found) a reasonable demeanour which we later discover is entirely fraudulent. The more charming the clinician the louder the warning bells ring (that has been my experience).
Lady Shambles, even now I can’t believe that they all start out that way though. I suspect that they are probably taught to be that way, and that some of them are extremely bitter because they ended up in a job that doesn’t match up to the one that they envisaged. It’s perhaps then easier for them to blame their patients, and take their frustrations out on them, than to stand up to the bullies.
The last I heard was that Wessley was on the panel that appoints judges so a judicial review may not be wise!
@ladyshambles
I agree that NICE has the key to solve this question by simply publishing the guideline.
The quality of the unpublished guideline is extremely poor so no tears should be shed over this pause. The real issue is that NICE should still withdraw the old guideline.
In fact, it may all work out for the best. Now that the guideline hasn’t been published, the Zorginstituut Nederland (Care Institute) can’t execute their plan to copy it, and the Dutch will need to develop their own guidance. The ME Vereniging Nederland has announced that it is ready for work on a proper ME guideline starting 1 October.
NICE already discredited itself majorly years ago when one of their employees hand-picked the members of the Dutch Health Council’s committee and changed the topic from ME to ME/CFS. For six years, Dutch ME patients have been completely ignored, but that is about to change.
I wonder if NICE have simply revealed their true colours to the world
I’ve just realised a probably inadvertently contributed to these “success cases” when Social Services (who were speaking to my GP behind my back) threatened to withdraw my 10.5hrs per week care. As a severeME patient I knew they couldn’t recommend GET & CBT but I was threatened – unless I started having showers & getting dressed my care would be removed as I didn’t meet criteria for care. I only qualified for meals on wheels because I could got to toilet independently so could care for myself. Speaking over me (lying in bed) to my parents & care co manger she said we can get her out of bed with a physio & psychological support to make this happen. I agreed as I needed them to leave my room & to delay decision to withdraw care. In true austerity style a letter arrived 2 days later giving me 2 weeks notice & inviting me to reapply if my circumstances changed. She also made referrals for physio & Reablement psychologist without informing my GP but writing later to complain that I had not engaged with the services. I can see how this looks like a complete recovery. Next month it will be 5 yrs since my last shower. Thank you to David & everyone else continuing to fight for the truth & research & effective treatments & hopefully a cure xxx
Without blood letting, there is nothing. – late 19th century physician
This is such obvious blatant political interference that it may actually be a good opportunity to send SS PACE to Davy Jones Locker. The Wessely School has now openly declared war on patients. This needs to be shouted from the highest yardarms.
This is not just a war metaphor; they are killing us, every day. Maybe people outside our community will finally notice? Especially the Long Covid folks. Whatever we end up with will be imposed on the Long Covid people as well.
The first thing I thought of when I heard the news is that this is the same sort of tactics used by Cochrane to keep their awful reviews in use for as long as possible.
When people work together to harm others, that is a criminal conspiracy. In the US, the RICO statute is used to put criminal conspirators in prison for a very long time.
Sir Simon and pals may want to think about that…
I fear the real opponents to the new guidelines have distanced themselves by convincing others (incidentally or knowingly) to do their dirty work. Plausible deniability for those involved with PACE et.al. but years of public promotion, training & industry influence has indoctrinated enough BPS/MUS/CBT+GET cult followers to object to change on their behalf. These colleges are about self-preservation when they protect 1 or more members vs harmed patients. Could HRH, the Queen withdraw the “royal” warrants from these colleges? And what about those with royal honours involved with harming patients, can these honours be removed? There’s a lot at stake but no easy way to pacify those who spat their dummies. #PublishThatGuideline
@Guido You said : “The ME Vereniging Nederland has announced that it is ready for work on a proper ME guideline starting 1 October.”
Well that is very interesting news. Like you intimate, I suspect huge swathes of the ME community have now read the unpublished Guideline and are aware of quite how poorly it reads as a Guideline intended for us in 2021. As you also imply it is not a ‘ME’ Guideline at all. Using the IOM as preferred criteria rather sets the seal on that misconception. It might be very much better if both Guidelines were demolished such that doctors can be freed from the straitjacket of NICE when it comes to treating people with this disease. That in turn might produce the curious phenomenon whereby good doctors who get a reputation for genuinely helping patients have full to capacity waiting lists and the psyches are left twiddling their thumbs.
So I’m vacillating about the best outcome. I think the most satisfying outcome will be for patient(s) or patient orgs to publish the embargoed Guideline themselves thereby giving us all the opportunity to critique its contents in the court of public opinion, whilst circumventing the process which has already been totally abused by NICE (and whoever is ‘strong-arming’ them behind the scenes). They’ve stepped over the line so we’re now into bandit territory aren’t we? If the rules don’t apply to ‘them’ they don’t apply to ‘us’ either.
Hurrah! – It appears that a doctor HAS spoken out against the approach of his Royal College (the RCP), tweeting that he’s ashamed of them. Well done, sir.
The first of many, I hope, if my trust in UK medicine is to be restored.
And now another, (same college), thank you, sir.
Look out for the CBT cultists, like their MAGA brethren ‘believers’ across the Pond, to be calling in the ‘Cyber Ninjas’ to audit the NICE review next…