WAMES ponders the NICE guideline shockwave

How far will it extend?

People with ME/CFS have been looking forward to the publication of the revised NICE guideline on 18th August 2021, since the review process began in early 2018. Frustratingly the publication date has been delayed twice. Once, due to the pandemic, and once due to the large amount of consultation feedback they had to sift through.

The ‘pause’

On the afternoon of the 17th August, just hours before publication was due, NICE announced they were ‘pausing’ publication ‘because of issues raised during the pre-publication period’. These came from professionals who didn’t want to implement them and the media storm that followed showed they were supporters of the Biopsychosocial (BSP) treatments of GET and CBT. WAMES wrote to NICE expressing our shock and seeking more information but we will have been one of hundreds, if not thousands, so we don’t expect a speedy response!

New guidance

The revised guideline was due to advise against services aiming to cure ME using GET and CBT. Graded Exercise Therapy (GET) treats muscle deconditioning, which is not proven to be any more of an issue in ME than any other chronic illness. Cognitive Behavioural Therapy (CBT) has been adapted to treat the ‘faulty’ illness belief that patients were physically unwell, though research has in fact found multi-system dysfunction. The guideline would also have acknowledged the key characteristic of Exercise Intolerance, which leads to Post Exertional Malaise (PEM), a worsening of symptoms following physical or cognitive exertion.

NICE’s impartiality now under question

The NICE committee came to their decision after examining lots of research, clinicians’ testimony and patient stories. They also accepted the research showing that the trial said to support the use of GET and CBT had altered the statistics to fraudulently make their point.

The announcement of the ‘pause’ in publication caused shock and dismay to patients and all those who had contributed to the process. But it also raises questions about the impartiality of NICE, who claim to oversee a ‘rigorous methodology and process’. They have been accused of ‘capitulating to vested interests’ and ‘throwing millions of people under the bus’, and returning to the ‘medieval catch-all of prescribing a course of leeches’ (see The Canary). It is unlikely they have applied their own rules and regulation to this action, but they did not follow up the announcement with an explanation of what would happen next, so we will have to wait before fully judging that.

Many questions abut the future

If the guideline is published in an altered form, will patients, ME clinicians and researchers be able to support it? Will it affect services positively or will commissioners back off from such furious controversy?

And what will health professionals think?  NICE guidelines are touted as the ‘Gold standard’ but patient surveys show that many doctors appear not to have allowed the 2007 CFS/ME guideline to affect their dealings with patients. A survey in ‘Pulse Today’ (the GP magazine) in 2015 revealed that GPs deliberately ignored the guidelines for a number of conditions because they felt they were unhelpful. This ‘circus’ is unlikely to change their views.

Can NICE regain everyone’s respect? Could a loss of confidence extend to guidelines for other conditions? How might this affect the healthcare offered to patients beyond the ME community?

There are so many questions and we have no idea what the future holds for the estimated 13,000 people with Myalgic Encephalomyelitis (ME) in Wales, or the 250,000 people across the UK!