On Monday 20 September at 1pm, people living with the disease myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or CFS) and their supporters will descend on the National Institute for Health and Care Excellence’s (NICE’s) headquarters in Stratford, London. It will be the first-time people with ME have taken direct action in recent memory. They’ll be there on behalf of the millions of people around the world house or bed bound with this life-changing disease. It is being organised by a newly-formed campaign group, The Chronic Collaboration. You can find them on social media using the handle @TheChronicColab
The group is led by Nicola Jeffery, who lives with various illnesses and conditions including ME. It aims to revolutionise the way chronically ill people are represented in the media and society more broadly – as well as within the activist community. It will also look to unite people living with different conditions under one umbrella, and also work to resist what it calls the “psychologisation of physical conditions”.
The demonstration will highlight what the group and others claim is NICE’s intransigence towards them, over its delay in publishing updated guidelines for the treatment of ME.
NICE was due to release the final version of its updated ME treatment guidelines for medical professionals on 18 August. These would be the first new ones since 2007; following on from the draft version it published in November 2020. But at the last minute on 17 August, it announced it was halting publication. NICE said in a statement that:
“Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported… 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”.
NICE will now hold a round table event in October to discuss with stakeholders how to move forward.
But many people living with ME, their families and supporters believe that NICE has bowed to the undue influence of proponents of discredited treatments it was set to remove or downgrade from its new guidelines. These include graded exercise therapy (GET, based on the PACE trial) which some scientific research has found to be ineffective or even harmful. SNP MP Carol Monaghan, who leads the All Party Parliamentary Group on ME, called the PACE trial potentially “one of the greatest medical scandals of the 21st century”. People like Jeffery and many others were previously told their illnesses were psychosomatic; to the point in some cases where doctors sectioned them under the Mental Health Act because they believed these people were making their symptoms up.
Groundbreaking LGBTQIA rights activist Peter Tatchell has given his support to The Chronic Collaboration’s protest. He said of the situation:
“Attempts to stigmatise, rubbish and discredit ME/CFS campaigners reminds me of when I protested in the early 1970s against aversion therapy, which claimed to ‘cure’ LGBTQIA people. Like ME/CFS patients today, I was also challenging the medical establishment, and I was dismissed as ‘not an expert’ and ‘not understanding’ the issues and the science involved. Right is on ME/CFS patient’s side”.
The Chronic Collaboration believes that NICE’s seeming capitulation to medical professionals whose treatments have caused physical, psychological and emotional harm in people living with ME is unacceptable.
Jeffery said of the protest:
“The Chronic Collaboration has been created in response to the recent refusal of NICE to publish the long-awaited ME guidelines. Many people with ME would like to protest this decision along with the years of medical neglect & mistreatment they have faced due to the psychologisation of ME after the scientifically flawed PACE trial, part funded by the Department for Work and Pensions. Not only has this caused medical abuse in patients with ME, it’s having a huge impact on the treatment and further investment of many other patient groups: from people living with chronic pain and medically unexplained symptoms (MUS) to fibromyalgia and long Covid. There are literally ‘Millions Missing’ globally and thousands of disabled people with ME in the UK who are desperate for their voices to be heard, represented and just taken seriously in many cases. Our group, and this protest, aims to do that”.
The Chronic Collaboration’s protest will be peaceful. It will be displaying dozens of photos of people with ME from around the world: those who wanted to be there but due to their illness physically couldn’t. The demonstration will hear from people affected by this condition: individuals, their families, advocates and more. Those who cannot attend will be joining in on social media, using #ProtestNICE4ME and #PublishThatGuideline
Overall, The Chronic Collaboration has one simple aim to begin with. It wants NICE to publish the guidelines immediately, and in full. Jeffery said of the group and the protest:
“After everything I know I have been through and everything that others have been put through, this honestly means the world to me. Now is the time to do something about it”.
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