Failure to keep up with the research on ME/CFS is ‘inexcusable’ | Our letter to The Times | 8 June 2015

June 8, 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


DAVID AARONOVITCH BOOK REVIEW, THE TIMES, 6 JUNE 2015


CG09vpHXIAAutJaThere is an unusual tone that runs through this book from page 1 to page 315 — it is of patient, compassionate frustration. It is the tone of someone who has spent a quarter of a century carefully explaining to people — very ill people — what they do not want to hear, or to medical colleagues what they do not have the training to cope with. This unwanted explanation is that the illnesses the patients have are simultaneously real but have no physical origins, and they are products of the mind.

A consultant neurologist at the National Hospital for Neurology and Neurosurgery, Suzanne O’Sullivan is the latest writer in what I think is a necessary and admirable new trend — that of physicians and practitioners sharing with readers the real experiences of their professions. This necessarily involves discussing case histories: histories which have to be disguised so that the individuals cannot be identified.

So we can be sure that whoever the person was who formed the basis of the ME sufferer, Rachel in chapter seven, he or she was not called Rachel and had not been a student on a dance course at university. But I had no difficulty identifying the underlying truth of O’Sullivan’s encounter with such a person, because I have known two or three victims of the condition myself.

So O’Sullivan’s “Rachel” was a sporty, fit, high-achieving young woman who started to feel strangely fatigued during her first year at college. She would drift off during lectures and began to experience pain in her muscles and joints. Tests, including a muscle biopsy, could find no cause for her condition, and yet it worsened. Within a year or so she had given up her course and was spending all day at her parents’ home, unable to move or even to eat. Her mother researched her condition on the internet and found other people with similar symptoms who were sufferers of “myalgic encephalomyelitis” or ME (sometimes known as chronic fatigue syndrome or CFS). The discovery came as a huge relief. At last they knew roughly what was wrong, even if they didn’t know what caused it.

In her introduction to the chapter on Rachel, O’Sullivan admits that “to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least”. This is because the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic — caused by the mind and not by a disease — is intensely hostile. I have experienced this hostility.

As O’Sullivan points out, this hostility arises for three discrete reasons. First is the (essentially correctly perceived) problem that while a physical disease may be susceptible to a physical cure, through drugs or surgery, a psychological condition is inevitably harder to prescribe for. Second is the feeling that while one may not be “responsible” for a physical condition, a psychological one is somehow your own fault and is less serious. And the third is the stigma of madness that the patient themselves, or the world in general, may attach to a psychological condition. Yet, as O’Sullivan says, “the reality of how life-destroying this problem is cannot be argued with” and it must be given the “same respect that we offer to a physical disease”.

Yet, if the patient is utterly opposed to a diagnosis that situates the problem in the mind, then they will not want to embark upon the kind of treatment that might help them. In which case, they are stuck. Completely stuck. “Unsticking” the patient, and the rest of us, is what, ultimately, this book is about.

ME is just one of the possibly psychosomatic conditions that patients present with. O’Sullivan begins with cases of “pseudoseizures” — that is fits that resemble epileptic seizures, but which can be shown to have no physical origin. Her first patient, “Pauline”, has suffered 12 years of fitting and is now effectively paralysed. She has been repeatedly tested for numerous conditions, never successfully. “You go into hospital with stomach pains,” O’Sullivan reminds her, “and you come out in a wheelchair.” Might she now be ready to consider seeing a psychiatrist?

Pauline is not rare. O’Sullivan says that as many as a “third of people seen in an average general neurology clinic have symptoms that cannot be explained by medical tests or examinations. In those people, an emotional cause is often suspected.” We know our minds create involuntary physical responses, such as blushing or crying (O’Sullivan does not mention some of our more indelicate parasympathetic responses), yet we resist the idea that illness could have a mental cause. We tend to believe that if the mind is involved we are either conscious of it, in which case we are con-artists and malingerers, or unconscious, in which case we are mad.

But O’Sullivan says that the proportion of her patients who are dissimulators — who are “putting it on” — is small. Instead, she thinks that, for various reasons, our minds can express distress, without our being conscious of it, through our bodies. If we cannot recognise this possibility, then we cannot deal with it and so are fated, instead, to undergo pointless operations, to take possibly harmful drugs and — almost invariably — to fail.

As she points out, the association of the subconscious with physical illness is not new. In the late 19th and early 20th-centuries, pioneer neurologists, like Jean-Martin Charcot, psychologists, like Pierre Janet, and psychotherapists, like Sigmund Freud, studied and theorised about how the unconscious mind works. And one, very general, conclusion was that illness could be a drastic “way out” or diversion from underlying mental distress that the patient could not confront.

However, O’Sullivan adds another kind of possibility. She notes that something like 70 per cent of patients who present with inexplicable conditions are female. Why is this? She speculates that because women are more likely to suffer traumatic sexual abuse, perhaps then physical illness is some sort of response to that. But she also wonders whether we aren’t immensely vulnerable to our own suggestibility. I feel a twinge in my back. I might take no notice of it, or I might look it up online. If I do the latter, perhaps I notice another associated pain which I also half think I had. And so on.

The fact is, as O’Sullivan admits in this honest, fascinating and necessary book, that we just do not know. Perhaps, one day, with the advance of neuroscience, we will. And perhaps we won’t. But, at the very least, we should keep an open mind.

It’s All in Your Head: True Stories of Imaginary Illness by Suzanne O’Sullivan, Chatto and Windus, 315pp, £16.99. To buy this book for £14.99, visit thetimes.co.uk/bookshop or call 0845 2712134″

14 thoughts on “Failure to keep up with the research on ME/CFS is ‘inexcusable’ | Our letter to The Times | 8 June 2015”

  1. As some of you may have already seen, I reviewed the book on both Goodreads and Amazon.

    https://www.goodreads.com/review/show/1300842864

    I find the chapter on ME to be manipulative and incoherent. In Dr O’Sullivan’s world, patients google their symptoms and decide they have ME, a far cry from my own experience in early eighties, but let’s not let reality get in the way. I am astonished that she has so spectacularly failed to keep up with the science.

    And although the ME/CFS chapter is only one out of nine in the book, David Aaronovitch spent at least half of his review spouting about how ME is probably psychosomatic. He seems very fixed on the psychs’ narrative of ME, I wonder why. I tried to engage with him on Twitter – and have done so before – pointlessly. One might think that my 33 years’ experience of ME – with a diagnosis by a consultant neurologist way before O’Sullivan’s time – and my being a writer of a well-received novel on ME would be worth exploring, but apparently my view is of no consequence. It is hard to break into the closed world of the London media, they seem – inexplicably, and harmfully – immoveable on ME.

  2. My pain Consultant, last week inferred the same sort of idea i.e. in 10 years time we would know more about past events and psychological distresses causing physical symptoms. I came away feeling badly let down.

    This makes me wonder just what else is to be published and if we are now on a backward journey into the realms of the psychiatrists.

    I feel deeply dismayed that a neurologist can publish such a clearly damaging book in this day and age.

  3. Thank you Nasim Marie Jafry for your views. I will read your link. The comment from my pain consultant’s registrar was, ” wonderful this internet isn’t it”.

    Sickening consultation really and I dread my further appointment with a 4th consultant!!

    After reading the above article from O’Sullivan, I actually find it so ridiculous it’s comical.

    Pity it’s so damaging and yes they all do ignore hearing the truth from those who know better.

  4. Well done Charles Shepherd as ever for trying to counter the dinosaur views of O’Sullivan and Aaronovitch. There was also an interview of O’Sullivan by Tom Sutcliffe on Radio 4 yesterday- why do these people get a platform for their views(of course she will sell more copies of her book) ? Psychiatrists obviously have a vested interest in promoting their “all in the mind” hypotheses ,or they would be out of a job , but I wish they would stick to illnesses which are all in the mind and that’s not ME! O’Sullivan has mistaken beliefs about ME

  5. Well done to both Dr Shepherd and Nasim Marie Jafry for their replies.

    The article states that Suzanne O’Sullivan admits at the beginning of chapter seven that “to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least”, then goes on to claim that “there are three discrete reasons” for the hostility to the idea that ME is psychosomatic. I would, however, like to add a fourth: the idea is almost certainly wrong, which might just explain the hostility with which her idea is greeted.

    The final paragraph of the review states: “The fact is, as O’Sullivan admits in this honest, fascinating and necessary book, that we just do not know.” With one part of this sentence I can agree – we do not know. But we’re beginning to learn, and the factual research points towards ME being “real”.

    1. I’ve just copied the following information directly from the Stanford University Medical Centre newsletter, as posted on Facebook by Tom Kindlon-pwme. Apologies if there’s any copyright infringement but I think this is good news for ME sufferers which needs to be broadcast:

      NEWS FROM THE STANFORD MYALGIC ENCEPHALOMYELITIS/
      CHRONIC FATIGUE SYNDROME (ME/CFS) INITIATIVE
      SPRING 2015

      Immunology in ME/CFS: With the leadership of Mady Hornig MA, MD and W. Ian Lipkin at the Center for Infection and Immunity at Columbia University, an in-depth analysis of the immune system of ME/CFS patients objectively confirmed that ME/CFS is a biological illness, and not a psychological disorder. This was observed by detecting elevated levels of cytokines in ME/CFS patients, proteins released by the immune system for fighting infections and other immune responses. These data indicate that ME/CFS is indeed an inflammatory disease. We will also be publishing a paper on cytokines that further supports ME/CFS as an inflammatory
      disease in the coming months.
      Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Hornig M, Montoya JG, Klimas N, Levine S, Felsenstein D, Bateman L, Peterson DL, Gottschalk CG, Schultz AF, Che X, Eddy ML, Komaroff AL, Lipkin WI. Science Advances. 2015 Feb; 1(1) ePub

  6. Radio 2 Simon Mayo has just had a psychoanalyst talking about the same subject. Peoples past reflecting on their subconscious and causing them to act accordingly.

    Looks like we are in for a bombardment of psychiatric stories, as I feared. It’s just so damaging when they mistake it for real disease and it’s stemming from a neurologist’s point of view.

  7. This may be one of the most revealing passages in the ME/CFS chapter:

    ‘In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.’

    There is something very interesting in the fact that Suzanne does not seem to have actually met (m)any patients with Ramsay-ME (in ’90s when she was training the Wessely/CFS school was just taking root). Rachel, the girl in her book with ME/CFS, is to my mind, an artificial construct, a composite character with the ‘behaviours’ of ME patients – internet diagnosis, increasingly helpless, ‘over-helpful’ parents – that the Wessely school adores. Rachel rejects the psychiatric treatment. We never find out what happens to her, though Suzanne says: ‘The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this.’

  8. Thank you Nasim. I find it so difficult to read full passages, so it’s very helpful to hear your and other’s comments.

    I need to hear the truth more and more as I go to see doctors who seem genuinely accepting that ME is real and yet they start to back track at the first sign of not being able to cope or many other reasons. Confidence slips and then I doubt myself until again I’m reminded of the truth about ME.

    Thank you to all including Most of all Dr Shepherd and the MEA Team.

  9. In my opinion, the ‘closed world of the London media’ does have a lot to answer for within the English Establishment. As a young PWME with ‘friends’ in literary and media circles, what chance did I stand in persuading readers of Elaine Showalter’s Hystories that ME/CFS has been repeatedly proven by scientists NOT to be psychosomatic? Everywhere I turned, there were meddlers keen to persuade me and those close to me that the illness was ‘all in the mind’. Wrong-headed ideas about ME/CFS can be as damaging as the illness itself. Thankfully, persistently swollen lymph nodes and a stack of biomarkers persuaded doctors otherwise. With unhelpful views perpetuated by some sections of the British media, it is no wonder PWME end up socially isolated or struggling with a tiny support network. You don’t expect to have to fight this very physical illness and a PR war, but that is the sad reality for many sufferers. Within a democracy there should be more room for intelligent debate and agreeable disagreement, but it seems the London literati with the loudest voices are always heard. Lovely letter by Dr. Shepherd though.

  10. Strange that these psychosomatic conditions seem to be infectious as well, isn’t it?

    The 1970s. Three people who spent a lot of time together all began presenting with strange—although initially different—symptoms at the same time. None got an adequate medical diagnosis, but as the symptoms sometimes remitted and none of the three was very severely ill, they just got on with their lives and went their separate ways.

    Thirty years later two of them bump into each other again, only to find that they have both since been diagnosed with M.E. Their symptoms had worsened significantly over time, largely because they’d kept pushing themselves into relapse through not understanding they had M.E. One of them got a diagnosis 18 years after becoming ill, the other 27 years later. They managed to contact the third person, asked about their health history, and discovered that they’d had M.E. but eventually made a full recovery.

    All were active, determined, down-to-earth people whose diagnoses came so late partly because they weren’t really the types to complain. Two were still children when they first became ill, so for many years they had no idea they even suffered from fatigue. They thought it was normal, so for years they didn’t report it as a symptom—they felt they were at fault for not coping with the stresses and strains of daily life as well as other people. They decided not to have children and missed out on career and social opportunities just to try and keep their heads above water, but weren’t even aware that these decisions, along with countless others they’d made, were part of a complex coping strategy that their illness had forced them to adopt.

    Three people living hundreds of miles apart, no contact for decades, and all developing exactly the same imaginary illness? Now that WOULD be a story for the newspapers.

  11. Ladies and gentlemen I agree with the comments about this disgraceful piece of “journalism”.
    Nasim may i just say that your review of this book was poetic.
    I recall when I was able to write so well, unfortunately this illness has for now, stolen that capability from me.
    Your review of the book as far as i am concerned more than levelled the score in the battle that is getting ME recognised as a physical illness.
    Prior to being diagnosed with ME I had suffered with depression for a long time and knew that particular beast well and had to a greater extent tamed it.
    After a bout of para typhoid it all changed.This ME is an entirely different beast one i have yet to master. For the author to maintain it is a psychological illness is not only ill-researched but an insult to the very basis of my intelligence.
    The simple question i would offer to both the author and reviewer of the book is this:-
    “If ME is a psychological disease, why am I not allowed to give blood? If I suffer with a mental health condition, I can give blood”.
    This tends to suggest that there is something physically wrong with me does it not?
    I trust this correspondence finds you as well as you can be.
    Nameste
    D

  12. Thank you, Dr. Shepherd, for your strong and clear letter on this appallingly uneducated and prejudiced book by someone who ought to know and do better.

    Is there any way that people such as yourself, who are doctors, can get a chance to appear on these programmes where such detractors from the truth are spouting off about their horribly bigoted beliefs? In the interest (presumably the public ought to hear the truth) of a scientifically based opinion, one would think that programme execs would want to allow you and other good doctors and researchers equal or greater air time. Is it too naive of me to think this could happen?

    I appreciate all of your efforts and they give me hope.

  13. Thank you, Big Dave, for your words. And I know I appear feisty but fighting this never-ending nonsense takes its toll, I am left truly shattered, as well as furious. Part of me wants to ignore it, but it is too important, and in this case, I am offended as a writer as well as someone who has longterm ME, her chapter is hopelessly naive and blinkered, at best, but also manipulative and incoherent, dangerously so, and there are passages that simply don’t make sense, it is not just the appalling recycling of false illness beliefs. I don’t know how it got past an editor, though I guess the editor trusted Suzanne’s medical knowledge. And I agree with bquandry, *we* all know about the science behind the scenes, the researchers know, but we need more doctors defending us in public.

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