Responses to Rod Liddle: letters published in ‘The Sunday Times’, 7 August 2011

August 6, 2011


Narrow vision on ME

Rod Liddle was as immoderate as the outrageous behaviour he was criticising (“Shoot the medical messenger — see if that’ll cure you”, Comment, last week). There are around 193,000 myalgic encephalomyelitis (ME)/ chronic fatigue syndrome (CFS) patients in Britain, and most have never threatened scientific researchers. So why paint a picture — “malingering mentals”, “foaming paranoia” — tarring thousands with the actions of a few?

There is a legitimate debate about which model — biomedical or biopsychosocial — best fits the illness, but it’s not true that evidence for the former is “non-existent”.

More than 90% of official grant spend on ME/CFS in the past decade has gone on research into cognitive-behavioural approaches. These are the “palliative treatments” Liddle refers to, but even their advocates recognise that they benefit only a small minority over and above standard medical care, and are not the answer to the biomedical enigma at the heart of ME/CFS. Its sufferers deserve better.
Dr Neil Abbot, ME Research UK

Terms and conditions

The term ME has not replaced CFS. It is the other way round. The medical profession has redefined ME as CFS so as to include both physical and psychological presentations. The ME Association agrees that ME is a neurological condition.

Our website is a rich source of information, but discussion pages on the internet attract a few who post uninformed rants. We deplore the actions of a handful of activists who threaten those who disagree with their views.

Recently, after great pressure from this charity, members of parliament and other ME organisations, the Medical Research Council finally agreed a list of biomedical research priorities with ring-fenced funding.
Neil Riley, Chairman, ME Association

9 thoughts on “Responses to Rod Liddle: letters published in ‘The Sunday Times’, 7 August 2011”

  1. Mr Riley may not agree with people who post on sites, but he should be making it look like those are threats instead of legitimate criticisms.

  2. From Co-Cure: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1108b&L=co-cure&T=0&I=-3&P=829

    ——–
    On Sunday 7th August, the Sunday Times (London) published only two letters in response to the provocative and inaccurate comment piece by Rod Little the previous week (“Shoot the medical messenger – see if that’ll cure you” 31st July 2011 https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1107e&L=co-cure&D=1&T=0&O=D&P=4465). As the letter from ME Research UK was considerably truncated in the printed version, a fuller version is pasted below.

    Letters To The Editor

    Sir

    As the leading funder of biomedical research into ME/CFS, we must take issue with Rod Little’s comment piece about “extremist” ME activists (“Shoot the medical messenger – see if that’ll cure you”, Comment, last week), which was as immoderate as the outrageous behaviour he was criticising. The National Institute of Clinical Excellence estimates that there are around 193,000 ME/CFS patients in the UK; most of them (around 192,990, I expect) have never threatened scientific researchers. So why did Rod Little paint a word picture – “malingering mentals”, “foaming paranoia”, “weird retrovirus”, “grim and livid” etc. – tarring thousands of ill people with the actions of a few?

    It was an ugly spectacle, but even worse were the errors of fact studding his comment piece, as four examples illustrate. First, many ME/CFS patients report becoming ill suddenly, often from a viral infection, and some remain chronically ill for decades thereafter; so, when they mention the possibility of infection, they are not necessarily pathologically wedded to a “weird” viral theory but simply making an obvious point. Second, “political correctness” has nothing to do with the naming of the illness; ME goes back 60 years, CFS 25 years, and we use the term “ME/CFS” at the moment until more is known about each. Third, there is a legitimate academic debate about which model – biomedical or biopsychosocial – best fits the illness, but it’s not true that evidence for the former is “non-existent”; if anything, the biomedical model predominates in academic circles across the world. Last, more than 90% of official grant-spend on ME/CFS in the past decade has gone on research into cognitive-behavioural approaches to help patients manage their symptoms and cope better. These are the “palliative treatments” that Rod refers to, but even the advocates of these approaches recognize that they benefit only a small minority of patients over and above standard medical care, and are not the answer to the biomedical enigma at the heart of ME/CFS.

    People with ME/CFS deserve better than the picture painted by this grim, inaccurate comment piece. Be thankful, Rod, that it’s not you lying there in bed for years with a protracted physical illness.

    Yours sincerely

    Dr Neil Abbot
    ME Research UK
    The Gateway
    North Methven St
    Perth PH1 5PP, UK
    http://www.meresearch.org.uk/

    ME Research UK is a registered charity (SC 036942). Our principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS, but we also have a mission to “Energise ME Research”

  3. Thanks tomk it is helpful to be able to read the entire comment.

    “more than 90% of official grant-spend on ME/CFS in the past decade has gone on research into cognitive-behavioural approaches to help patients manage their symptoms and cope better.”

    What was the remaining 10% spent on? Is that risk factor studies where they don’t look at biomdedical markers but again age, sex, etc. That still means no actual money going to biomedical research. How can you look at risk factors when the MRC quiet deliberately refuses to use diagnostic criteria that is appropriate and is not a diagnosis of exclusion?

  4. Neil Riley has asked me to flag up his original letter to ‘The Times”, when he responded to the lurid column by Rod Liddle. As you can see it was very heavily edited before publication – the heart and guts were torn out!

    Sir,

    Rod Liddle’s column about ME was factually inaccurate and needlessly provoking.

    A look at The ME Association website would have told him that the term ME has not replaced CFS. It is the other way round. The medical profession has redefined ME as CFS so as to include both physical and psychological presentations. Contrary to Rod’s assertion, The MEA agrees with the World Health Organisation and the Department of Health that Myalgic Encephalomyelitis (ME) is a neurological condition.

    His statement that The MEA website, http://www.meassociation.org, contains ‘foaming paranoia’ and that we believe Professor Simon Wessely is part of a conspiracy with the whole psychiatric profession, gives a misleading impression about The ME Association. We make no judgments on personalities or their theories. Instead through the website we provide a rich source of factual information about M.E.

    However, there is on the site the opportunity for the public to comment on current news about M.E. Regrettably, as Rod will know, discussion pages on the internet attract a few who post uninformed rants. The ME Association deplores the actions of that handful of activists who threaten those who disagree with their views.

    Our members are, however, rightly frustrated by the award of millions of pounds of taxpayers’ money to psychiatric research whilst there has been no support for bio-medical studies. Recently, after great pressure from this charity, members of parliament, and other ME organisations, the Medical Research Council finally agreed a list of biomedical research priorities with ring-fenced funding for this purpose. We welcome this move and will be co-funding at least one such application.

    As someone who has lived with M.E. for the last 25 years since catching a severe viral infection, I can assure Rod that this is a real, physical illness. Talk to the loved ones of those who have it, talk to their partners, their children.. Come and talk to me. We can tell you how the active, fun loving person they knew, suddenly became a physically exhausted and brain-fogged stranger.

    Yours sincerely,

    Neil Riley
    Chairman of The ME Association.

    Unit 7, Apollo Office Court, Gawcott.Buckingham. MK184DF

  5. The Times’ heavy handed editting of the above letters blunted /distorted their message and was tantamount to censorship. It further compounds the injustice of Liddle’s dreadful article.

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