Sound sense from Edinburgh: Nasim Marie Jafry’s rapid response to BMJ articles, 23 June 2011

June 23, 2011


History of prejudice

* Nasim Marie Jafry, author of ‘The State of Me'

Edinburgh

‘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

4 thoughts on “Sound sense from Edinburgh: Nasim Marie Jafry’s rapid response to BMJ articles, 23 June 2011”

  1. And, of course, the Ramsay book is still available from The ME Association, price £5. We reprinted it in a commemorative facsimile edition in 2005 – the 50th anniversary of the Royal Free outbreak.

    Sorry, but I couldn’t resist getting in the plug. Blog moderator’s privileges!

  2. I love his book, I would not be without it! My wee bible (in as much as atheist can have a bible). Thanks for highlighting my response, Tony – as I have said elsewhere it is not as sophisticated as I would have liked, but I wrote it at one in morning and was trying to be calm 😉

  3. You did well, Nasim. I too had a rapid response published (well blow me down) and like you, I feel universal adoption of the Canadian Criteria is essential to progress.

    Nigel Hawkes talks of threats by patients. The real threat to those engaging in biomedical research into ME/CFS is from authorities with control of purse strings and career advance. Many good researchers with valid projects, have had their paths blocked; for example Jonathan Kerr and Elaine DeFreitas. At a recent NIH conference in Bethesda, Dr. Kenneth Friedman talked on this very subject, and a video is available for viewing on YouTube (1)

    The single PACE trial cost >4 million sterling, yet the funds for biomedical research over the whole of the last decade in the UK would struggle to add up to one quarter of this figure.

    The results of the PACE trial (lead researcher Peter White) would command more respect if outcome measures had not been altered prior to reporting outcomes. For instance, the SF36 score used to denote a successful outcome was lowered from 75 to 60, when entry criteria to the trial was 65 or lower (2,3).

    Peter White said recently that PACE was not studying CFS/ME patients, but CFS patients, a confusing situation created by conflating a neurological disease (myalgic encephalomyelitis) with idiopathic chronic fatigue.

    Which brings me to the excellent submission by Ollie Cornes. His central point is clearly illustrated by the confusion over the cohort in PACE, which was chosen (in the first instance) by the Oxford Definition (4). I wholeheartedly agree that the only definition that reliably diagnoses myalgic encephalomyelitis is the Canadian Consensus (5,6), all others currently in use conflate the neurological disease with depression and idiopathic fatigue, a fact that has been perhaps the greatest obstacle to clarity in the search for understanding of, and effective treatment for Myalgic Encephalomyelitis.

    1) http://www.youtube.com/watch?v=KhB-701-BMU&feature=player_embedded
    2) PD White, MC Sharpe, T Chalder, JC DeCesare and R Walwyn for the PACE trial group; Protocol for the PACE trial: A randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy; BMC Neurology 2007, 7:6
    3) White, PD; Goldsmith, KA; Johnson, AL et al Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial; The Lancet, Early Online Publication, 18 February 2011doi:10.1016/S0140-6736(11)60096-2
    4) M C Sharpe, L C Archard, J E Banatvala, L K Borysiewicz, A W Clare, A David, R H Edwards, K E Hawton, H P Lambert, R J Lane; A report–chronic fatigue syndrome: guidelines for research; J R Soc Med. 1991 February; 84(2): 118-121.
    5) BM Carruthers; A K Jain; KL De Meirleir, MD, PhD; Daniel L. Peterson, MD; NG Klimas; AM Lerner; AC Bested; P Flor-Henry; P Joshi; ACP Powles; JA Sherkey; MI van de Sande; Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols; J of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115
    6) http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf

  4. Hey jace, Thanks, there are some excellent responses up now, including your own! And I got another one in – on the Hawkes’ article 🙂

    Still, I just realised that they slightly edited my above response in which I had written: ‘…perhaps if the neuroimmune illness ME had not been conflated – by Professor Wessely and his colleagues – with the much more nebulous ‘chronic fatigue’ for the last twenty years…’. I see they took out my reference to Wessely & co.

    It really is an art form to get a good response that is calm and clear, comprehensive – and not angry. It can be hard to keep anger out after what we have been put through. And we have to say the same things over and over again to get the message across to a wider audience. But I *think* we are getting there. I hope so.

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