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Pressure grows on Lancet to review “flawed” PACE trial

BMJ 2018; 362 doi: https://doi.org/10.1136/bmj.k3621 (Published 22 August 2018) Cite this as: BMJ 2018;362:k3621

Re: Pressure grows on Lancet to review “flawed” PACE trial

The PACE trial does not exist in a vacuum and was the much publicised crystallisation of years of effort to psychologise a poorly understood neurological illness myalgic encephalomyelitis (ME). I was diagnosed with ME/severe postviral fatigue syndrome by a consultant neurologist in 1984, after a Coxsackie B4 infection in late 1982 in west of Scotland. I had muscle biopsy and EMG to confirm this diagnosis, both abnormal. I had never heard of ME before my own diagnosis, aged twenty. I remain ill today.

I have lived through the politics of the illness being played out - in UK in late eighties/early nineties ME was reframed as chronic fatigue syndrome (CFS), a nebulous syndrome which bears little resemblance to the illness I and thousands of others in UK experience. In fact, it has been recommended by the *Agency of Research and Healthcare Quality (ARHQ) in USA that the Oxford Criteria, which underpinned this reframing, be retired as research using them is simply unreliable.

ME utterly derails and destroys lives - there have tragically been two recorded deaths in UK as a result of ME - and patients have undoubtedly suffered further as the result of treatments like graded exercise therapy (GET) and cognitive behavioural therapy (CBT ) being touted as curative.

In reality, many ME patients have been made worse by graded exercise, which is unsurprising as exertion intolerance is at the core of ME. Symptoms are exacerbated by both physical and mental exertion. It can take days to recover from minor exertion. The mechanism of this disrupted energy remains elusive, but it is simply impossible to exercise one’s way out.

Unfortunately, those who supported the PACE trial have compounded the suffering of ME patients by refusing to listen. PACE and its subsequent trumpeting by media as tackling ‘fear of exercise’ was an insult and catastrophe for patients all over the world. Carol Monaghan MP is correct to state that when full details are known that PACE will go down as one of the biggest medical scandals of 21st century.

* AHRQ evidence review (2014)
https://www.meresearch.org.uk/news/ahrq-review/

Competing interests: No competing interests

24 August 2018
Nasim Marie Jafry
ME patient, author of The State of Me (HarperCollins, 2008)
Edinburgh