Thursday, June 23, 2011

Nasim Marie Jafry, author of 'The State of Me': History of prejudice

Nasim Marie Jafry, author of 'The State of Me'
'But he also makes a clear and reasonable request: that the UK consider adopting the narrower Canadian definition for CFS/ME, which distinguishes patients with "delayed, post-exertional malaise and fatigue" from the broad range of people presenting to their doctors with tiredness (doi:10.1136/bmj.d3836).'

Yes, it is a clear and reasonable request: perhaps if the neuroimmune illness ME had not been conflated with the much more nebulous 'chronic fatigue' for the last twenty years, we would not be in the position we currently are.

Regarding the PACE trial, I hate to sound like a broken record, but pacing is *essential* to survival when you have ME, and graded exercise makes many people worse. I speak from experience. I relapsed catastrophically in late eighties when I moved to London to try to work part-time, after forcing myself back to university (part-time). After almost thirty years of this illness, I know that graded exercise is the worst thing I can do. The PACE trial cannot reverse my experience.

One final thing: I was diagnosed with ME by a consultant neurologist after becoming ill with Coxsackie B4 in 1983 - pre-Canadian clinical guidelines - with what is known as Ramsay-defined ME. Everyone with an interest in ME should read Dr Melvin Ramsay's book, The Saga of Royal Free Disease, 1986. He says -'The prejudice harboured against those of us who hold the view that ME is an organically determined disease defies rational explanation'. You simply cannot look at ME without examining this history of prejudice.

Competing interests: None declared

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Published 23 June 2011

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