Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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MEA writes to The Times re a new book on imaginary illnesses, including ME/CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jun 8, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    Roy S, zzz, meg22 and 18 others like this.
  2. Sasha

    Sasha Fine, thank you

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    sarah darwins likes this.
  3. charles shepherd

    charles shepherd Senior Member

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    Text of letter to The Times:

    [​IMG]
    Failure to keep up with the research on ME/CFS is ‘inexcusable’ |

    Our letter to The Times | 8 June 2015


    INTENDED FOR PUBLICATION


    Dear Editor

    Book review by David Aaronovitch: “It’s All in Your Head – True Stories of Imaginary Illness” by Dr Suzanne O’Sullivan

    Dr Suzanne O’Sullivan and David Aaronovitch have both fallen into the trap of concluding that medical symptoms that cannot be readily explained are likely to be psychological in origin, or even imagined.

    Consequently, people with unexplained medical symptoms are treated, as they often are in the case of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), with behavioural treatments such as cognitive behaviour therapy (where most people with ME/CFS consistently report that they gain no benefit) and/or graded exercise therapy (where around 50% of people with ME/CFS repeatedly report that they are made worse as a result).

    Whilst accepting that physical symptoms can be caused by a psychological illness, far too many patients with these unexplained symptoms are now being conveniently lumped together with a dustbin diagnosis known as a somatic syndrome – leaving no incentive to carry out research aimed at finding an underlying cause, or an effective drug treatment. This is bad and lazy medicine.

    I have worked in both hospital medicine and psychiatry and have dealt with several thousand people with ME/CFS over the past 30 years. I also have personal experience of this illness following a chickenpox encephalitis. This knowledge and experience has led me to believe that there is a wide range of clinical presentations and disease pathways that come under the ME/CFS umbrella.

    This is now supported by solid research evidence that has identified abnormalities involving the brain, muscle, endocrine/hormone and immune systems – with a recent report from the Institute of Medicine concluding that ME/CFS is a serious, complex, systemic disease that can profoundly affect the lives of patients. These are abnormalities that cannot be explained by a wholly psychological model of causation. One consequence of this research is the finding that some people with ME/CFS benefit from the use of Rituximab, an immunomodulatory drug that is normally used to treat the malignant disease lymphoma. A phase 3 clinical trial involving Rituximab in ME/CFS is now in progress.

    The continuing refusal by sections of the medical profession and media to read the peer-reviewed research that is being published on ME/CFS is not only inexcusable – it is an important reason why people with ME/CFS are justifiably upset and refuse to accept they have a psychological or imaginary illness when they do, in fact, have a serious neuroimmune illness that is just as genuine and disabling as multiple sclerosis.

    The UK ME/CFS Research Collaborative will be holding its annual research conference in Newcastle in October. There will be key sessions covering neuropathology (led by the Chairman of the Medical Research Council’s Neurosciences Board) and clinical trials (including Rituximab). I hope that both author and reviewer will consider attending this meeting where they will discover that ME/CFS is neither unexplainable nor imaginary.

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association
     
  4. sarah darwins

    sarah darwins I told you I was ill

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    Terrific.

    Has it actually made it into The Times? (it's not possible to see online without a subscription to the paper).
     
  5. charles shepherd

    charles shepherd Senior Member

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    Not yet - it was only sent about 5 hours ago!

    But I do now have an acknowledgement from the editorial dept
     
  6. AndyPandy

    AndyPandy Making the most of it

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  7. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Thanks for the excellent rebuttal!
     
    Gingergrrl and Never Give Up like this.
  8. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Every single opportunity we get to stomp out such false information, esp from the medical field, we should do it immediately, vehemently, and relentlessly. So any future bozo physicians will be afraid to write such crap again for fear of violent reactions from the patient community - and will stay away from us and from a medical condition they know nothing about!!!
     
  9. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thank you to the ME Assoc for writing your reply to the horrific articles in the Times and Guardian recommending this 'book' that says PWME have fictitious disease suffering.

    Next time, please mention a subset of ME is fatal, and also we cannot donate blood especially if we develop 'CFS' during a pregnancy. That might make some people reconsider their bigotry towards patients.

    I think the GMC should know about doctors who lead patients into a demise of physical and mental health decay from disease denial, including in book format. Incredible, but of course, expected when you're seen a scum in society, due to the press and their meddling.

    No other patients would be allowed to have books written about them, if they were of a religious, sexual, or racial minority. The doctor would be disciplined or struck off.

    When it's 'ME' though anything goes and they authorities don't care that patients commit suicide out of despair.

    Stronger wording is required I feel by anyone in a position of influence or power (not patients!), the public must know from 'trusted sources' that the end result of doctors slagging vulnerable patients off is patient who suffer neglect with no appropriate research meaning no therapies.

    People who end up tube fed, bed ridden, in wheelchairs, and/or with horrible neurological conditions like epilepsy, neuralgia's and cancer do so, because no one believes them.

    People don't believe them because 'experts' deny their suffering is based on organic disease they cannot overcome with a good dose of CBT.

    Quite nauseating when this message, is coming from doctors!!!
     
    Last edited: Jun 11, 2015
    Sean, sarah darwins and Gingergrrl like this.

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