Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline

By David Tuller, DrPH

Two months ago, the UK’s National Institute for Health and Care Excellence (NICE) abruptly delayed publication of its new ME/CFS clinical guideline under fierce objections from the GET/CBT ideological brigades and their minions. Today (Monday, October 18th), the agency hosted a meeting to allow these powerful dissenters from some of the British medical associations grandly known as “royal colleges” to present their case, however stupid and unwarranted that case might be.

These esteemed parties apparently found it inconceivable and unacceptable that the main evidence for their purportedly “evidence-based” interventions was dismissed by NICE as being of “very low” or, in some cases, merely of “low” quality–an assessment reflected in the guideline’s rejection of the long-standing standard-of-care. Some GET/CBT brigadiers accused the guideline development committee of being over-influenced by irrational patients—even though only five patient representatives sat on the 21-person body. Some news organizations, even at this late date, accepted this sort of nonsense as legitimate scientific argumentation.

Professor Michael Sharpe, eminent PACE author and one-time Trial By Error commenter (!!!), publicly projected confidence that the delay would lead to a reconsideration of the evidence. It is of course understandable that Professor Sharpe has remained firm in his conviction that the evidence from PACE was not of appallingly poor quality–in other words, that the trial was not the piece of crap I have always called it. I empathize with his need to protect his ego, but not with his doing so at the expense of logic and patients’ well-being.  

For patients, the last two months have been hellish. This community has been badly served by the medical establishment for decades. It should not be surprising that the NICE delay struck many as a continuation of that abuse. The unexpected decision furthered a widespread conviction that the guideline would never be published in the form endorsed by the guideline committee.

And the events alarmed others not explicitly covered by the guideline. A host of organizations representing Long Covid patients recently weighed in, sending NICE an open letter that noted the overlaps between the two illnesses and urged immediate publication of the guideline. (The letter expressed agreement with the similar appeal I organized and sent to NICE last month, which was signed by more than 150 experts and 120 patient groups.)

The Monday meeting was attended not just by those representing the dissatisfied parties but also by representatives from patient and advocacy organizations. It was conducted under a widely known framework called the Chatham House Rule, under which “participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed.” Given that, the public reports later Monday from some meeting participants have been limited but positive.

Extremely positive, in fact.

Assuming these early reports are borne out by swift publication of the version of the guideline endorsed by the NICE committee, today will prove to be a tipping point in this debate—with long-term implications for the future. More on that another time. For now, suffice it to say that Professor Sharpe and his main PACE colleagues—Professors Peter White and Trudie Chalder—are unlikely to be pleased by the reports from today’s event.

So, who said what?

Janet Sylvester, who represented UK, tweeted this:

“I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic for a swift decision from NICE to publish the guideline.”

Here’s part of what Dr Charles Shepherd, who participated in his capacity as medical director of the ME Association, wrote in a Facebook post:

“What I can say is that it was a well managed and constructive meeting which covered all the objections from the Royal Colleges and I hope that this will now lead to publication and implementation of the new guideline…I assume that NICE will produce some sort of statement on the next steps forward fairly shortly.”

Jonathan Edwards, emeritus professor of medicine at University College London, provide a bit more information in several posts on the Science For ME forum:

“The meeting went much better than most people expected.”

“There were no substantive objections that were not handled simply and effectively by Peter Barry and Ilora Finlay [the guideline committee chair and vice chair], at least as it appeared to me…

There appeared to be an overwhelming majority view that the term GET should go. It was described as toxic. Similarly for ‘curative’ CBT…There was also complete agreement that GET should not continue under some other name. The inappropriateness of GET as defined in PACE was agreed by all.”

“I think it [the meeting] may have achieved exactly what its purpose was…to make people all stop and think what it is they are really arguing about and see what matters to the patients. More than one person present made strong comments about the importance of listening to patients – and not just for the sake of saying it.”


18 responses to “Advocates Issue Hopeful Comments After NICE Pow-Wow on ME/CFS Guideline”

  1. CT Avatar

    Warm words maybe, but this still sounds like semantics to me. Until the Royal Colleges and NICE get down on their hands and knees and publicly apologize to ME/CFS patients for the appalling medical abuse that they’ve suffered, including this completely unnecessary delay to the publication of the new guideline, I doubt that much will change for ME patients in the UK.

  2. Tracey Burgess Avatar
    Tracey Burgess

    Thank you David. Personally, I believe NICE should have stuck with their procedures and just done their job – publishing the revised guidelines, in August, two months ago. Further distress has been inflicted on an already downtrodden and possibly traumatised, patient group. Retaining the potentially risky and dangerous ‘treatment’ GET, for any length of time, is irresponsible and may have caused harm during these last few months.

    I welcome the publication of the new guideline but I’m feeling psychologically and emotionally battered by the unnecessary distress caused directly by the pause and the subsequent uncertainty.

  3. Claudia Heath Avatar
    Claudia Heath

    If GET is really to go, that is great, but then the November draft version of the guidelines needs to be published, not the watered down final one.

    Your comments on Sharpe about his ego really hit the mark.

  4. Carole Bruce Avatar
    Carole Bruce

    At the moment the NICE RT feels like a lukewarm compromise to me.Thus there will be no need to fund and research or real treatment of this devastating condition. Drs won’t even be aware of any change and the NHS website will just need a few tweaks. Due to Chatham House rules we’ll never know what stance the charities took, or what their demands were. Invest in ME and Physios4ME were not invited which might have made for a more robust discussion. How many of the participants actually see severely ill patients, harmed by ‘Activity Management’ with goals in mind that forget that people with ME cannot make energy?
    Meanwhile a whole population of severely ill patients have lived with immense stress for over two months now. Not ideal.

  5. Lady Shambles Avatar
    Lady Shambles

    Pardon me if I don’t get too excited by the reports which have come from yesterday’s Roundtable meeting.

    i) it should never have taken place at all
    ii) given it did take place the lack of transparency does not please most (probably all?) people with ME
    iii) I’ll only ‘believe it when I see it’ wrt the embargoed Final Guideline being published without change
    iv) even if it is published it’s still worse than the Draft and the Draft was unfit for purpose (no matter how valiantly our representatives tried to make it better .. this is not a criticism about them). This is not what a Guideline for a severe neuroimmune disease should look like in the C21st
    v) it will make absolutely zero difference to my own experience of this disease unless I’m abused and gaslighted less when I meet medics: what an indictment that is.
    vi) I, like many other people with ME, am at a point with my disease presentation where I’m looking down the barrel of a gun. Life is ticking louder for some of us than others and those with presentations where this is true have NO chance of any useful, ameliorative help at all.
    vii) thus if the Guideline is published as per the 18th August document then it not a day for celebration but one in which the medical profession, the medical sciences, Establishment Quangos and Luddite Royal Colleges should hang their heads in shame that *this* is all we’re worth. There is no good result here. There are just 50 shades of grim.

  6. Abbie Avatar

    Well then! Nice are good at making you feel they understand, they know the right words to use, but so far, that’s all it is, words, which are nothing without action. However, I am hopeful that this is a step forward to getting the guidelines published with immediate effect, all this while, while we wait, more will suffer wrongfully. You keep tackling the top dear David and Berkeley, we will keep chipping from below, sooner or later, their walls will come crashing down, thank you David, we are all so grateful! ✌

  7. CT Avatar

    I’m pretty certain I don’t have ME/CFS, but just the other day CFS was slipped into my medical record as a possible dx by a doctor who I was seeing for a different condition. She hadn’t taken a proper history in relation to fatigue and CFS wasn’t mentioned at all during the consultation, so I was taken aback to see it being raised in the clinic letter. This sort of sloppy medicine (or medical dog-whistling perhaps?) has to stop.

    If NICE and the Royal Colleges do now completely agree that GET shouldn’t continue under any name then they should apologize publicly for the harm that has been caused to patients over many years. Warm words behind closed doors don’t cut it. Also, NICE needs to ask itself this searching question – “Why wasn’t GET thrown out of its 2007 guideline, or when the harms of GET were raised in the subsequent judicial review?” They were told then, but it seems they refused to listen.

  8. Gijs Avatar

    A bit premature and too optimistic. Changing the term GET isn’t going to change anything. Because they will continue to promote an exercise program. The GET/CBT supporters have so much power in the ME/CFS world.

  9. Sarah Avatar

    Thank you

  10. Barbara Robinson Avatar
    Barbara Robinson

    The proof of the pudding will be in the eating! It’s what how and when this is translated into adequate, safe and compassionate services that really matter.

    So come on NHS England & NHS Improvements (WHAT improvements?) ‘Level Up”…. and get on with it!

    Commissioning and Contracts Teams will respond if the CCGs actually identify this UNMET NEED on their forward plans. How may have it there is the question to ask? I suggest not many!
    If it is not a priority, it falls into a very black hole!
    If not, why not? Or apply for Special and Exceptional Circumstances funding from your local CCG.

  11. Jonathan Edwards Avatar
    Jonathan Edwards

    I have sympathy with a lot of the cautious comments. In terms of building adequate ME/CFS services I think this is much more the end of the beginning than the beginning of the end. But for reasons not necessarily related to this meeting I think that NICE and most of the organisations present at RT see things the same way. There is a huge amount of work to do in educating health care professionals in a more sensible approach. There is also work that needs to get started on gathering reliable evidence for exactly what factors in such an approach are most important, so that next time there is a guideline committee there will be some evidence of a reasonable standard based policy on. And there is a need for adequate funding of service provision and research.

  12. Lady Shambles Avatar
    Lady Shambles

    JE said: “ that next time there is a guideline committee there will be some evidence of a reasonable standard based policy on”.

    i) Fair dos although the ICC criteria & its Primer are a good place to start (even if they are 10 years old.. back to basics)

    ii) many of us will be dead by the time the next GDG convenes.

  13. jimells Avatar

    “… Sharpe … publicly projected confidence that the delay would lead to a reconsideration of the evidence.”

    He has every reason to be confident, since the fix is in and he is part of it. One only needs to read the 2018 correspondence between Invest in ME and Professor Mark Baker [1] to understand the fix was in before the guideline was written. From IIMER’s summary of the correspondence: [2]

    “Professor Baker believes withdrawal of the guidelines would result in the entire support structure being removed. He has said that the services that are now provided to patients will be withdrawn if the existing guidelines are withdrawn immediately.”

    Ordinary people call such threats blackmail and extortion. Corrupt professors carrying water for insurance companies call it politics and business-as-usual.

    It is all perfectly “legal” as long as it is profitable for a few. So what if it harms and kills patients. No one cares much about them, beyond their small circle of friends and family.



  14. Dr. Bronc Lawson Avatar
    Dr. Bronc Lawson

    I really don’t share the optimism of all those privileged enough to be invited to this completely unnecessary meeting whose genesis lacked any kind of transparency.
    This is a not day of celebration.

    I spoke to my GP about the new guideline and he agreed with me that it will make zero difference to my life. The years tick away and my illness gets worse. Where is the commitment to substantially increase the funding for treatments/research into this biomedical disease?

    The new guideline, even if it excludes any mention of GET merely takes us back to 2007, which in itself was very inadequate. So no I won’t be one of those preaching hopium about this meeting.

    The new guideline is still way behind the science on my illness. One can hope that progress in research being conducted in the US and other countries may one day drag the UK medical establishment kicking and screaming into the 21st century when it comes to ME.

    I recently interviewed Dr.William Weir and noted in our conversation that:

    “Dominant forces within the U.K. medical establishment seem to have given political support and priority in research funding to the psychiatric diagnosis and treatment of patients with ME/CFS.

    This appears to have been supported, with some notable exceptions, by the majority of parliamentarians who seem to have been largely indifferent to the plight of citizens afflicted with ME/CFS.

    Over the years, they have apparently ignored both the recommendations of the Chief Medical Officer’s 2002 report into ME/CFS as well as the recommendations of the 2006 Gibson Inquiry into ME/CFS. ”

    Dr.Weir’s reply to my observation was:

    “The adherence of some members of the medical establishment to [the use of] GET for ME/CFS is reminiscent of the use of bloodletting in cholera.

    In both cases, dogma is the driving force. Funding efforts for proper scientific (i.e. non-psychological) research into ME/CFS has been hampered by such dogma.”

    Other reports based on information supplied by a delegate to the meeting suggest that the harms of GET were not accepted by the RT. Plus while the name GET maybe dropped it may continue in another form under the name Activity Management.

    Final point. During the research for my PhD thesis it became abundantly clear that ordinary people only win improvements in their lives by taking collective action together. You don’t win improvements/reforms by having cosy chats with dogmatic elites who, as George Carlin once famously said, really don’t give a damn about you.

  15. Margaret Avatar

    Thankyou for yet again supporting the science and patients. I doubt we will ever get an apology for the harm caused but certain people deserve to be front page news. Their continued refusal to admit their part in manipulation of data for their own ego is despicable.

  16. jimells Avatar

    Stopping the guideline with a highly irregular seat-of-the-pants process has left NICE with egg on its face. Questions are being asked in private clubs.

    The guideline, if it is ever published, will have to be modified before publication. Otherwise, interrupting a well-defined process due to outside interference looks like institutional weakness and a mistake. And bureaucracies never admit mistakes, no matter how many people are harmed.

  17. LB Avatar

    One thing I was pleased to see, that children will not be treated differently. I’m guessing it was Royal Of Paediatrics who didn’t want to lose their grip on their treatments. I was worried this area might be negotiated. This publication will then be able to act as template for Long Covid sufferers who have PEM, Crawley had set up Clock study to experiment on more children. I do hope that will be stopped.

  18. Peter Kemp Avatar
    Peter Kemp

    Sorry, but what this sounds like to me is that the contents of the Guideline were and remain open to debate. That means that the lives of ME patients are still susceptible to the opinions and vagaries of a bunch of people chosen by undeclared criteria, who are not appointed by patients to speak for them.
    But a lot of patients seem quite happy about this, which IMO shows that they have no voice and are grateful to feed off any crumbs that NICE et al happen to drop for them.