Shake It Up

Sally Callow, founder of ME Foggy Dog and ME campaigner, has launched a petition to have a central system instated that allows ME/CFS patients to report any harmful effects that they experience from being prescribed non-pharmaceutical treatments, like GET and CBT. Sally explains why the central collection of this data is so vital for the ME/CFS community

Quantitative data on harms from nonpharmaceutical treatments is urgently needed to inform policy and research funding decisions for ME/CFS, long COVID, and many other illnesses. The Shake It Up campaign was brought about by issues raised during the National Institute of Health and Care Excellence’s ME/CFS guideline review that was published in 2021. During the review, which took over three years to be completed and published, it was claimed by proponents of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) that there were no reports of harm from non-pharmaceutical treatments – of which both GET and CBT are. This was news to the ME/CFS patient community in the UK who had been complaining to their GP practice, NHS Trust, ‘CFS clinic’, PALS, and Healthwatch about harms from these treatments for over a decade. This meant that thousands of complaints had been dealt with internally and not collated or counted centrally. The NHS has been marking their own homework and found themselves to be doing a good job. The fact that there was no quantitative data to be used as evidence was also commented on during the review

The NHS has been marking their own homework and found themselves to be doing a good job ...***** became completely bedbound, barely able to eat and talk, incapable of reading, listening to music, watching television or indeed tolerate any sound at all

process. This is because patients have nowhere central to report harms to, the Medicines and Healthcare Products Regulatory Agency’s (MHRA) “yellow card system” is purely intended for licensed products, such as pharmaceuticals and devices. During the last few weeks of the guideline review, a member of the committee asked for patients to submit personal anecdotes/statements so they could see the harms for themselves. This was one of those statements submitted by a caregiver on behalf of a very sick ME patient. Their name has been omitted for anonymity.

I herewith, on behalf of *****, confirm that ***** went from having mild/moderate ME being able to potter about at home, do some light reading and conducting short conversation, to having very severe ME due to following graded exercise therapy (GET) as recommended by Consultant Rheumatologist. Following the recommended GET, ***** became completely bedbound, barely able to eat and talk, incapable of reading, listening to music, watching television or indeed tolerate any sound at all. *****’s quality of life is non-existent, to call his existence a ‘living death’ is an understatement in that this description does not even start to cover the intense physical and psychological suffering. ***** is coming up for ten years spent unable to do anything but staring up at the ceiling and is in desperate need of help.

This statement highlights why an independent reporting system is urgently needed. The NHS cannot continue to mark their own homework. ME Foggy Dog’s Shake It Up campaign includes a petition titled “We Demand A New System to Report Harms from Non-Pharmaceutical Treatments”. It currently stands at 8182 signatures; we are petitioning Secretary of State for Health and Social Care, Sajid Javid MP and NHS CEO Amanda Pritchard. I am asking supporters to also email their MP and Lord Kamall (Parliamentary Under Secretary of State for Technology, Innovation and Life Sciences at the Department of Health and Social Care) about the need for a reporting system for non-pharmaceutical treatments. Thus far, Lord Kamall, Ms. Pritchard, and the Department of Health and Social Care (DHSC) have replied to our correspondence and are continuing to direct patients towards the established complaint process - NHS, CCGs, and PALS. One has to wonder why there is a reluctance to create a system by which very sick patients can report harms from non-pharmaceutical treatments when the benefits to patients, the NHS, and government are numerous. Is it too cynical to suggest economic factors could be the main concern? Non-pharmaceutical often equals cheap treatments. Given that it is estimated that 46% of long COVID patients meet the diagnostic criteria for ME/ CFS, a patient community of around one million people is going to become a very expensive problem for DHSC and the NHS. NICE have spent over three years reviewing scientific data and have reached the conclusion that exercisebased therapies should never be recommended to ME/ CFS patients as treatments or curative. Extract from the NICE guideline (29 October 2021):

Incorporating physical activity and exercise 1.11.9 Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms. 1.11.14 Do not offer people with ME/CFS: • any therapy based on physical activity or exercise as a cure for ME/CFS

NICE has now stated that this is purely for guidance and medical professionals can use their own clinical judgement but must be prepared to justify their decisions in front of the General Medical Council if challenged. By saying this, I believe they are aware that more patients will be harmed by non-pharmaceutical ‘treatments’ despite the new guideline. I have personally seen online posts from medical professionals stating that they will continue to recommend exercise to ME/CFS patients as otherwise they have no treatments to offer them. Patients would prefer no treatments to being prescribed non-pharmaceutical treatments that may harm them. The petition has now been running for over three months and I have received comments from members of other patient groups and they have explained how this system will benefit them too. I’m pleased to know this system will benefit many patient groups in the UK. Please support the Shake It Up campaign and sign the petition at mefoggydog.org/shake-it-up.

Patients would prefer no treatments to being prescribed nonpharmaceutical treatments that may harm them