NICE, the media and the cultural problem of myalgic encephalomyelitis (ME)

RE-CAP: the ongoing NICE guideline in development (GID) process

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. The draft consultation documents were published on 10 November 2020, followed by a six-week consultation period concluding on 22 December 2020. Final publication is expected on 21 April 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 neuroimmune disease with which I have lived since 1981.

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A reminder of my observations on the draft guideline document from my previous post.  (This is just a snapshot of some significant points. There are many others):

• NICE has confirmed that there is currently no treatment or cure for ME. A shocking admission for an illness which has been documented for nearly a century. That the focus of this guideline remains on management rather than treatment for a longstanding illness of this severity is completely unacceptable.
• Graded Exercise Therapy (GET) should no longer be recommended as a treatment for ME patients. The scandal here is that it was ever offered in the first place when it clearly caused severe deterioration and, in some cases irreversible damage, to ME patients.
• There is still an emphasis on increasing activity as a form of illness management. This leaves open the possibility of further damage from ill-informed therapists at the so-called specialist “CFS/ME” centres.
• Cognitive Behavioural Therapy (CBT) remains as a treatment option but downgraded to a supportive therapy of choice by the patient, rather than an attempt to brainwash very sick patients into believing that they’re not really ill, they only “think” they are. This still leaves open the possibility of continuing inappropriate interventions by historically misguided CBT practitioners.
• Pseudoscientific therapies such the Lightning Process (LP) are removed as treatment options. Again, the scandal is that the LP was ever considered appropriate at all. Some ME patients have described how they were encouraged or even coerced into paying hundreds of pounds to take part in a process which many then found to be exploitative and abusive.

In summary…

This draft document represents a few steps forward alongside a lot of worthy but pretty meaningless waffle about proper support and social care for ME patients.  Great in theory but how much will actually translate into better practices, improved conditions and – above all – serious biomedical research on a scale which properly reflects severity and disease burden?

Keeping expectations realistic

NICE is a creature of process and can only operate within its statutory remit in the Health and Social Care Act 2012.  Its stated functions are “[a]dvice, guidance, information and recommendations” (S 237). There is no mechanism for enforcement although lack of compliance can be subject to litigation.

It is important to bear in mind that the guidance produced by NICE is just that – guidance. It is advisory, not mandatory. Guidelines are created via evidence presented to, and selected by, the GID committees. NICE makes recommendations but does not formulate policy. 

The responses from all recognised stakeholders in the “CFS/ME” GID process will be considered against the draft guideline document. Individual patients’ responses will also be considered but carry less weight. However, the draft as published is likely to form the basis of the ultimate publication. In these final stages, substantial changes to the draft are unlikely.

Media response to publication of the draft

Media coverage of the publication of the draft documents was slightly more balanced than usual (eg. here). This may have been because the Science Media Centre, the self-appointed press office of the British scientific community, produced only a written roundup of reactions to the publication rather than its usual live briefing event. Even during Covid-19 restrictions, virtual live briefings on many other topics have continued, but not, on this occasion, for the “CFS/ME”/NICE draft publication story.

However, whilst a “balanced” approach to ME media coverage sounds good in theory, it still contains damaging and inaccurate information. It fails to address decades of disinformation and misinformation. It does not even begin to acknowledge the level of vitriol which has been directed towards the ME patient community over many decades via traditional – and, more recently, social – media platforms.

The constant skewing of the history of ME into an inaccurate “psychiatric + fatigue” model of illness has promoted the toxic narrative of the “lazy, crazy people”. This has caused unwarranted pain and distress to millions within the international ME community. It has provided justification for dangerous and inappropriate “treatments” such as GET and CBT. It has legitimised the abuse of a vulnerable patient group. And, most importantly, it has obstructed long overdue biomedical research. 

The cultural problem

Changing both the general perception of ME as a disease entity, and the portrayal of its patient community, requires the shifting of an entire global culture. The Twitter account @RFH1955 is currently doing an excellent job of curating a selection of ME stories from the British media archives. It documents the unfolding press coverage from the famous 1955 outbreak of the disease at the Royal Free Hospital in London onwards.

This Twitter feed is a salutory reminder of how the media – both print and broadcast – has continued to blow hot and cold over ME for the sixty-five years since that outbreak. That is reflective of a much wider cultural problem. Whilst much creditable work is done by various individuals and ME patient groups in order to address this challenge, there has never been a nationally-coordinated, coherent media strategy in place.

The lack of such a strategy is still painfully obvious, as I have pointed out repeatedly in this blog, particularly in my series of posts from 2019, “Changing the Narrative”. In Part 3 of that series, I set out a pathway for beginning to put in place a strategic media initiative.

Past, present and future

The challenges and stigma attached to the illness are acknowledged in the NICE draft. However, until the decades of reputational damage experienced by the ME community are acknowledged and addressed by the institutions which have enabled the continuation of abusive behaviour towards patients, then meaningful change may occur – but only at a painfully slow pace.

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In 2015, as part of my series “The Secret Files on ME”, I wrote the following in a post entitled “The Secret Files Unwrapped: Part 1 – the importance of fair and accurate records”:

The complete absence of a visible patient narrative became painfully evident last week [ie. January 2015]. The mainstream British media’s wilfully ignorant coverage of ME patients’ perceived “fear of exercise” gave the headline writers a field day (examples here and here).

Many journalists simply regurgitated a press release from the Science Media Centre’s relentless propaganda machine, having failed to make any responsible enquiry into the real story. Subsequent rebuttals from patient groups and charities limped in on the back foot. Inevitably, however, the positive and corrective commentary was drowned out in the general furore. Patients and supporters rallied but were all too late to the party.

Why? How could this happen yet again? Because it can. Because that real story, patients’ actual lived experience, is invisible. It remains unseen and undocumented. Accounts of individual patients’ experiences appear occasionally, often in local media or comment sections of national media, but their impact is low. At worst, these stories may even serve to normalise the shocking way in which patients are treated and the illness portrayed, rather than emphasising the underlying scandal.

Chronically sick ME patients are not up to the herculean task of funding and managing a long overdue strategic media initiative to disseminate the real story pro-actively and address negative publicity. But without such a campaign in place, it will happen again. Patients will remain without a credible platform from which to speak and generate an accurate record for the archives.

Do media stories really matter? Yes, of course they do – because those stories are subsumed into the source materials which constitute our collective history. If there can be no aggregation of fair and accurate records, then history is falsely written and becomes a mere propaganda tool.

Postscript

Four days ago, on 10 December 2020, a New Zealand news website published an article about a biomedical study of ME from Professor Warren Tate’s team at the University of Otago. The article appeared under the heading “Researchers prove Chronic Fatigue Syndrome [sic] is not psychosomatic“.

After so many decades of documented suffering by millions of patients all over the world, how is it possible that such a headline can even be contemplated, let alone published?

There is still a great deal of work to be done.

“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019