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Possible responses to the new NICE guideline for “ME/CFS”

June 22, 2021



In 2017, the English National Institute for Health and Care Excellence (NICE) began the process of updating the existing guideline on myalgic encephalomyelitis (ME), originally published in 2007. Within the UK, Scotland and Northern Ireland have their own equivalent processes and legal systems. This post relates to the situation in England and Wales.

The draft consultation documentsOtVmgpckQr25e6Xxl%PU8A were published on 10 November 2020, followed by a six-week consultation period concluding on 22 December 2020. The final publication date has been delayed several times but is now expected on 18 August 2021.

[NOTE: “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” (NICE’s terminology) is the subject of numerous different names and a confusing variety of case definitions. For the purposes of this blog, it is ME, the complex, multi-systemic neuroimmune disease with which I have lived since 1981.] 

Effect of the new guideline on the ME community

Traditionally, the broader ME community has fallen into two very different camps. In one camp is a large and powerful lobby group of scientists and healthcare practitioners who support a psychosocial approach to treating the illness (the “psychiatric lobby”). In the other camp is the vast majority of the patient community and their carers who, after many decades of neglect and abuse, urgently require a fully-formed biomedical pathway for diagnosis and treatment. 

Since the 1980’s, the dominant narrative – and, alongside that, the outgoing NICE guideline – has been controlled by the psychiatric lobby. The current NICE Guideline Committee for the “ME/CFS” update consists of representatives from all sides of the debate. The draft consultation documents published in November 2020 indicate a shift away from the psychosocial approach to “ME/CFS” by rejecting the much-vaunted but frequently harmful Graded Exercise Therapy (GET), downgrading the utility of Cognitive Behavioural Therapy (CBT) and prohibiting the use of pseudo-scientific “treatments” such as the Lightning Process

The draft also states that all those involved in living with or treating ME should “[b]e aware there is no current treatment or cure (non-pharmacological or pharmacological) for ME/CFS” (page 24 of the consultation document). Apparently, this is the best that the British healthcare system currently has to offer for an illness which has been documented for nearly 100 years, ie. since the first recorded outbreak at the Los Angeles County Hospital, California, USA in 1934. 

This current state of affairs is a shocking indictment, not only of the UK’s healthcare system but also of the members of the psychiatric lobby who have sought and retained control of a far-reaching international narrative, all the while boosting their own careers to the severe detriment of the lives of millions of patients, not just in the UK but worldwide. 

Unsurprisingly, most ME patients continue to press for appropriate recognition of their illness and accelerated biomedical research leading to actual treatments and, eventually, a cure. In the meantime, NICE continues to represent one of many battlegrounds. 

So – looking ahead to the final publication of the guideline in August 2021, what should the ME community be considering?

Judicial review

Judicial review is the most obvious way of challenging NICE’s conduct in drafting new guidance. The process must be started within three months of the action from which grounds for the claim arose (in this case, the final publication date).

There are three grounds for judicial review – illegality, procedural unfairness and irrationality. Incompatibility with human rights is also a consideration. An application must be made to a High Court judge for permission to proceed. Most applications fail at this early stage. The bar is set very high, much higher than in 2007 when a previous attempt was made at reviewing NICE’s conduct.

Challenges can be brought by individuals or a group. Action by a recognised community group is preferable as it depersonalises the process to some extent and tends to have greater credibility. Anyone considering beginning proceedings should seek expert legal advice first. See here for more information about the process of judicial review generally. 

Following the publication of the previous “ME/CFS” NICE guideline in 2007, two members of the ME patient community launched a judicial review of the new guidance which displayed a strong psychosocial bias. The patients’ challenge, which was based on the “procedural unfairness” limb, was unsuccessful and the judgment makes for very uncomfortable reading. 

In the current “ME/CFS” NICE update process, the draft consultation documents were published in November 2020. The psychiatric lobby seems to have become somewhat alarmed by the shift in tone, judging by the increased volume of research touting their own brand of “treatments” and their ramped-up media drive.

The Guideline Committee should not have accepted any new evidence after the close of the consultation period in December 2020. If they have, then, arguably, this becomes a fresh consultation process in which anyone can submit further evidence and comment – and everything gets put back again. 

I have no inside knowledge of what is happening at NICE at the moment. The guideline development process is confidential so it’s anyone’s guess from the outside (although NICE seems to have been making a genuine effort at maintaining transparency throughout this review, as far as is possible). However, it doesn’t take a genius to surmise that the situation in NICE’s virtual “Room where it happens” is pretty tense, with the various camps arguing their own cases.

Until the final publication of the new guideline, it’s impossible to say whether or not pursuing a legal challenge against NICE could be advisable or even desirable, whichever camp you are coming from. As things stand, procedural unfairness looks like the only realistic grounds for challenge and the threshold for getting permission to proceed is very high. 

Whilst there is still an enormous amount in the current draft that is rightly open to criticism, nevertheless, it is a major improvement on the previous version from 2007. For that reason, there would need to be a significant shift back towards a psychosocial treatment paradigm before a challenge should be considered by the ME patient community. 

Media coverage of the new guideline

Whatever the outcome, the final publication of the new guideline is likely to attract some media coverage. How much will depend on whether or not there is a substantial deviation from the draft version and how much forward planning has been done for the big day. 

The psychiatric lobby has had a very sophisticated media machine in place for the last couple of decades. The ME patient community has very little beyond sending out a few press releases and a handful of media contacts, not all of which are sympathetic to the patient agenda. The ME patient community desperately needs a proper strategic initiative and media development plan in place if this situation is to change.  I have written about this at length, particularly in my series of posts from 2019, Changing the Narrative. In Changing the Narrative #3, I have set out a simplified pathway to kickstart the process – but no takers, as yet (as far as I’m aware).

Members of the psychiatric lobby will already be planning their media response to the final publication with alternative spins being prepared, in order to manage whatever the final version of the guideline actually says. At this stage, it is too late to build an entire new media strategy for the ME patient community but hopefully, something useful can be devised by the various groups and/or charities which have some resources available. Positive media coverage doesn’t just happen. Appropriate investment must be made, a strategy must be developed and good contacts cultivated. This takes time, effort and, of course, substantial financial input. 

Again, without knowing what the final guideline will say, the only way to prepare a media response is to plan for all scenarios eg. no change from draft, slight change, significant change or a complete rewrite – in which case, as I said earlier, this could amount to new consultation process by the back door and would be a massive story in its own right, before even starting on the actual wording of the guideline.

Note: if any ME groups do have a mature, well-prepared media strategy under way then please let me know and I will update this post with great pleasure (or not, if you prefer. I’m not trying to give away confidential information here). However, as far as I am aware at this point, there is no such strategy in place.

Factoring in chaos theory

Final publication is still nearly two months away. Any number of things could happen before then and everything that I’ve said here could be wildly out of date or totally wrong. However, continuing to plan ahead for different outcomes is the least that the ME community can do to be prepared for whatever eventuality occurs next. 




8 Comments leave one →
  1. Kathryn Fenn permalink
    June 22, 2021 12:35

    The blog seems to divide the two camps as the biopsychosocial lobby and then the opposite patients and reps who :

    “urgently require a fully-formed biomedical pathway for diagnosis and treatment.”

    However, for about 20 years the patient population and the charities have been split into some patients & more conservative groups who are happy to compromise and maintain that collaboration is the only path and the radicals – some patients & groups who have stood up for a better & more urgent funding strategy and feel we are is still in a very ill-served situation.

    It says:

    “Unsurprisingly, most ME patients continue to press for appropriate recognition of their illness and accelerated biomedical research leading to actual treatments and, eventually, a cure”

    But I would say that the charities who collaborate are pressing in a very different way to #MEAction (the global charity). And they actually have quite low patient support/endorsement given the patient membership is so low. So what will be chosen to be reflected as the patient narrative / response to the NICE guidelines by the charity groups media officials, won’t necessarily reflect the wider patient voice, opinion and concerns. And what will be called for /laid out for the way forward will not be necessarily representative of all the wider community wishes . Eg many people think the past decade and this one so far are distinctly lacking in ambition and robust activism Towards to the goal of finding treatments soon, with the charities too satisfied with decodeME And resting on long covid hopes instead of a proper funding program in place.

    I think the membership charity groups are already preparing a response to NICE guidelines. The MEA has had it as their MEAW21 focus and Dr S is on the committee, so far less in the dark than the rest of us. I think from our side the media potentially will be focusing on the “good news“, the transforming ME scene and “the future” And won’t reflect the terrible way many in our community are existing due to years of mismanagement via NICE style treatments, won’t criticise the establishment outside NICE Of the past, and won’t present us as woefully neglected on research. It might well Be a “things are looking up for the ME community with the now safe and effective pacing options to be delivered instead of Get and a decodeME study and longcovid research in place” story.

    The biopsychosocial response for balance will likely just be some quotes about disappointed that NICE have caved in possibly and perhaps Paul Garner suggesting its a mistake because other patients could benefit as he did from the therapies. Whether most journalists decide to leave it open ended as a controversy continues story or close it as an ME patient finally believed, i don’t know yet, probably depends on the NICE guidelines itself in part. Hopefully Nice itself would make clear that they weren’t leant on and the reasons why they decided evidence quality was poor et cetera.

    If the psychiatric lobby loose this NICE guidelines battle what they say is of less importance than how the media is used by our side to further our cause /set the record firmly straight given that we will have media coverage probably at a larger scale than we have for the past 10 years and will do in the near future, with nothing on the horizon in research.


  2. Guido Den Broeder permalink
    June 22, 2021 13:44

    As far as strategies go, it may not be the best option to describe this NICE guideline as pertaining to ME. Myalgic encephalomyelitis is not mentioned anywhere in the text, nor for that matter is chronic fatigue syndrome. The guideline instead deals with the fantasy diagnosis SEID which is misleadingly called ME/CFS.

    Liked by 1 person


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