Not so NICE

If you’re new to the ME/CFS community, it may be increasingly apparent that we aren’t treated all that well (no pun intended!) This week we were dealt the latest blow of an onslaught that has been ongoing for decades.

Before I begin, lets remind ourselves that M.E has been recognised by the World Health Organization as a neurological disease since 1969. The alternative name Chronic Fatigue Syndrome CFS) was not in use at this time.

This is hard to consolidate so bear with me. I have done my best during a very difficult week.

In 2007 the NICE guidelines on ME/CFS were released. These form the basis for all healthcare professionals in the UK. Cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit. If a full CBT or GET programme is inappropriate or not available, components of CBT or GET should be offered

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management Clinical guideline [CG53] Published: 22 August 2007

Your first thought might be, why was exercise recommended for an illness that’s trademark symptom is an exacerbation of all symptoms after exercise/activity.

And the research they refer to? The PACE Trial, which had started in March 2005.

If you’ve been lucky enough to have never heard of the now discredited PACE Trail scandal I can only give you a brief overview. “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation” was published in The Lancet in 2011. The authors were psychologists and psychiatrists, an immediate red flag to even the most unscientific of minds that a neurological illness was placed in their hands.

“I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century,”

Carol Monaghan SNP MP

The study’s findings were grossly exaggerated A survey conducted by the ME Association in 2012 showed that 74% of patients had their symptoms worsen after a course of GET.

After years of concern and campaigning by patients, scientists, and charities, the NICE guidelines of ME/CFS went under review. In November 2020, a draft revision of the guidelines on ME/CFS came out. The community breathed a huge sigh of relief to see that finally science prevailed. Not least because of the quote below:

Do not offer people with ME/CFS:

any therapy based on physical activity or exercise as a treatment or cure for ME/CFS.

generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses.

any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS.

therapies derived from osteopathy, life coaching and neurolinguistic programming (for example the Lightning Process).

NICE Draft guidelines, November 2020

And yet. This was just a draft. There was time for things to change for the worse again. And they appeared to. On 29th March 2021 we found out that the publication date of the new and updated guidelines was being pushed back to 21st April.

In the statement to stakeholders, NICE said:

“A further delay is regrettable as the current guidline, with its faults, remains in place and continues to influence NHS policies throughout the UK. The finalised, updated guideline is awaited eagerly not only to allow it to come into force but also to allow stakeholders to gauge any changes which may have arisen from the comments received during the draft consultation stage which ended on 22 December 2020. Of particular interest will be whether the rejection of GET and CBT as ‘treatments’ for ME/CFS remains unaltered.”

Quote from NICE taken from ME Research UK

And yet, on the afternoon of 17th August NICE put out a press release saying the guidelines were paused, less than 24 hours before the expected publication.

Included in the statement, it was mentioned that:

“Unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need. In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.”

We don’t know for sure what this means.

But it seems quite clear that the National Institute for Health and Care Excellence (NICE) have caved in to pressure from those who have done untold damage to people with ME/CFS. Those who have build their whole careers of the premise that Graded Exercise Therapy is a safe and effective treatment for people with ME/CFS.

I will say that, the incoming Head of the Royal College of General Practitioners is Dr Clare Gerada. What’s important about that? Well, she is married to one of the psychiatrists heavily involved in the PACE Trail. Could this explain what NICE were referring to when they say they need the support of those who will implement the new guidelines?

Why do some clinicians persist in defending the old treatments based on CBT/GET?

Processes such as NICE reviews are needed because clinical judgment on its own is insufficient for drawing consistent conclusions about treatment options. Clinicians are human beings, whether they be service leaders, senior academics, or eminent professors. They are subject to human fallibilities. These fallibilities include the problem of being naturally wary of anything that upsets the status quo, especially where one’s own professional reputation is threatened.

Understandably, many clinicians have based their practice on the previous NICE guideline. They have invested time and effort developing services around the provision of CBT and GET to ME/CFS patients. Overhauling these services in light of the new NICE guideline will be especially challenging for these clinicians, for both psychological and logistical reasons.

Brian Hughes, 15th August 2021 The Science Bit

“There has to be a complete rethink of the medical advice given to sufferers of M.E. as even gentle exercise can set them back for weeks and, in some cases, months. However, unfortunately for many this is still the advice being offered. Discovering that the PACE trial was funded by the DWP, no doubt with the intention to reduce the amount of people on benefits, should cause great concern. As a scientist, I am appalled by the methods used in the trial, which included changing the parameters and success criteria midway through the study. This has been widely discredited in the research community.”

Carol Monaghan 20th February 2018

For now, I am taking a step back from all of this. But I am glad I found my voice to speak up about this as best as I currently can. I am beyond disheartened at how patients, like me, are being mistreated. This latest move by NICE seems to be unprecedented; to pause the publication of a guideline that (hopefully) removes harmful and detrimental ‘treatment’ so that those new to ME/CFS might be saved from the harms so many of us have experienced.

I feel quite broken, and incredibly upset that this has happened. That we can matter so little to the healthcare professionals who seem to be refusing to put in place the new guidelines. I am lost. But as ever, we will rally and regroup as a community, just as we have every single time we’ve faced an obstacle like this.

I am sending you all so much support. I know how heavy this week has been. Please take some time to hibernate or immerse yourself in things other than this week’s events.

Best wishes, Anna

Useful links:

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT

David Tullers’s website

Published by Anna Redshaw

Blogging about life in the slow lane with an invisible, chronic illness. I wasn't always a sick chick so this is somewhat of a life changing experience!

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