Parliament Plays NICE

#MEAction UK was thrilled to watch the longest ever UK parliamentary debate about ME on 21st June, after working so hard alongside so many others to make it happen.

The three hour debate in Westminster Hall about treatment and research reflected a seismic shift in political understanding of ME. It was an historic day for people with ME in the UK and around the world.

MPs slammed the PACE trial and the NICE guidelines, called for biomedical research and decried the decades of abuse people with ME have faced here in the UK.

Sir Edward Davey called for an immediate halt to graded exercise therapy (GET) to ensure that patients aren’t harmed between now and October 2020.

He asked: “Should not graded exercise therapy be removed as a treatment option even before the NICE guidelines are reviewed, given the evidence that people are being harmed by it?.. Is there not a possibility that in future a court could compensate ME sufferers if they continue to be prescribed GET, given that we, the Minister and medical professionals know the evidence?”

Immediate Suspension of GET and CBT

#MEAction demands an immediate end to the use of GET and CBT. We applaud the work Invest in ME has already done in this area.

Recent comments by NICE in a BBC article suggest they may be willing to take action in this area before the new guidelines are finished:

A NICE spokesman said: “We do recognise the controversy about the currently-recommended treatments and will discuss with the expert committee, once appointed, before deciding on any action prior to the completion of the new guideline.”

However, the harm needs to stop now. An interim warning must be added to the current guidelines, covering the time until the new guideline is published, stating that GET and CBT should not be used. Furthermore, this message must be disseminated to all GPs and health and social care professionals, including in the Department of Work and Pensions (DWP).

Second Draft Scope for New NICE guidelines

Just as ME was being discussed in Westminster Hall, the second draft scope for the ‘ME/CFS NICE Guideline’ was released, along with the Equality Impact Assessment. All stakeholders have been asked to give a written response before the 26th July.

The scope is a document which provides the framework for the new guidelines; and providing feedback about the scope is one of the best ways in which stakeholders can influence those guidelines.

The title of our report about the last scoping workshop was ‘Listened to, but were we heard?’ The answer to that now appears rather mixed.

#MEAction’s Initial Thoughts on the Second Draft Scope

Overall we see that some stakeholder input has been taken on board, but the draft remains worryingly inaccurate and does not reflect a scientific understanding of ME, retaining many omissions. We are not satisfied that NICE will consider the full range of scientific literature and that this may result in outdated and dangerous guidelines once again.

Slightly stronger language is now used to describe ME in the opening statement (‘Why the Guideline is Needed’), though it is still not nearly accurate enough. Recognition that patients are being pressured to participate in exercise programmes that lead to a worsening of symptoms was welcomed. We are also pleased to see an increased focus on education throughout, and the removal of managing comorbid conditions from the list of what areas that will not be covered.

We agree that it is crucial that children and the severely ill be given specific consideration but have concerns about how their voices will be fed into the new guidelines and how adequately their needs will be understood and addressed. NICE must put substantial work into prioritising the voices of severe patients and must address how they will make inputting accessible for those who are very ill.

Crucially, a disappointing emphasis on ‘fatigue’ suggests NICE fundamentally still don’t understand the basics of ME. Describing ME demands focus on the distinctive symptom of post-exertional malaise, described in modern diagnostic criteria as the cardinal feature of the disease. Additionally, NICE has not specifically included objective measures in the list of main outcomes of management strategies. Nor have they included harm as an outcome. This is of utmost importance as poor quality trials, such as PACE, are unblinded and rely primarily on subjective measures. This is deeply concerning to us, and will be a major focus in our response.

We also find the equality impact assessment to be embarrassingly lacking, and are shocked that we were not asked for input at the last scoping workshop. We were glad to see inequalities relating to ethnic origin and low income groups flagged. However, for other illnesses, ableism is considered specifically and we ask: why that was not deemed necessary for ME, given its history? We also wonder why gender (apart from for men) was not considered and note the absence of any reference to LGBT+.

Read the Second Draft Scope

Read the Equality Impact Assessment

What Now?

Our team will be looking at these two documents in much greater depth and writing our formal response in the coming weeks. As always, all community insight to support and inform this is greatly appreciated, so do email [email protected] with your thoughts by 17th July so we have time to incorporate them.

NICE are also using this period up until the 26th July to recruit members for the Guideline Development Group. It’s very important that people with ME who understand the context of this disease participate. Please consider applying if you are able! You can find out how to here.