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
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uantitative 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 44
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...***** 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.
