Mental Health and ME, Part One: ‘All in the Mind’

One of the most common misconceptions regarding ME is the idea that it is psychosomatic. This assumption stems in part from the fact that there is as yet no universally reliable diagnostic test, so it is often diagnosed on the basis of self-reported symptoms following the exclusion of other possible explanations. The problem is compounded by a large and very vocal group of psychiatrists who dismiss biomedical evidence of a physical cause of ME in favour of bio-psychosocial theories, claiming that ME is a form of personality disorder characterised by depression, exercise phobia and false illness beliefs.

Despite official recognition that ME is a neurological disease, the treatments sanctioned on the NHS (anti-depressants, graded exercise and behavioural therapies) have a primarily psychiatric focus, thereby reinforcing the perception that ME symptoms must be ‘all in the mind’. What little money the government spends on research into ME (far less than for many comparable disorders) has overwhelmingly been used to try and justify this psychosocial approach rather than funding the kind of biomedical research that might help to identify a cause or cure.

Patients have responded with outrage, leading to accusations in the press and from psychiatrists that people with ME would rather be incurably ill than accept their illness might have a psychiatric cause. Most patients however, care very little whether the cause is physical or psychiatric so long as researchers uncover the truth so that effective treatments can be developed. In my experience, rejection of the psychosocial model for ME is rarely a kneejerk reaction from patients too ashamed to accept a psychiatric label but rather a considered response to months or years of reading medical literature in a bid to educate themselves about their disease.

Ever since my diagnosis I have tried to keep an open-mind about the cause of my symptoms. I would willingly accept a mental health diagnosis if it meant I could be well again, but I simply cannot find the evidence to substantiate it. While I am not a medical professional and have only a layman’s understanding of the research, the overwhelming weight of evidence I have encountered points to a biological cause.

For the sake of full disclosure I should confess that one of my main sources of information has been the websites of support groups that advocate a biomedical approach. While these sites may not represent an entirely balanced view, my search for answers has by no means been restricted to such sites and while I cannot claim to have read the results of every clinical trial, my searching through medical journals for objective proof of a psychosocial cause have so far proved fruitless. That doesn’t necessarily mean the evidence doesn’t exist (one would hope that psychiatrists would not label symptoms as psychosomatic without extensive clinical evidence to support this approach) but if the evidence does exist, I have yet to find it. Evidence for neurological, immunological, cardiovascular and mitochondrial abnormalities in ME however is pretty extensive. If anyone reading this happens to know of any medical papers or clinical trials that demonstrate a psychosocial cause, I genuinely would be interested to read them.

The few clinical trials I have managed to find so support a psychosocial view have either been much too small to form the basis of any firm conclusions or have been debunked by peer-review as being fundamentally flawed. In fact, psychiatrists who have set out to prove the psychosomatic nature of ME have frequently found the precise opposite results to the ones they predicted. Sir Simon Wessley for example, notorious for his psychosocial theories about ME, compared ME patients and sufferers of rheumatoid arthritis in an attempt to demonstrate the prominent role that personality disorders play in patients with ME. His research found that according to measures of “perfectionism, attitudes toward mental illness, defensiveness, social desirability, sensitivity to punishment (a concept related to neuroticism)” and social or emotional dysfunction, ME patients were no different to those of RA patients who have an undeniably physical cause for their disease. Wessley concluded that “the stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.”

One of the dangers of a psychosocial approach is that it places the onus for recovery on the patient alone so failure to respond to treatment can be seen as non-compliance or evidence of the extent of personality disorders. In the early years of my illness I was told it was psychosomatic by so many people that I started to believe it. I complied with all the recommended treatments, convinced they would help me recover but when they failed to do so (and even made me worse) I was made to believe that I was to blame. I was told that sub-consciously I must be choosing to stay ill or else the cognitive treatments would have worked.

According to the UK media, researchers have received hate mail and even death threats from a small minority of extreme campaigners for expressing psychosomatic theories about the nature of ME. Like most patients, I utterly condemn such actions which can only harm attempts to encourage doctors and scientists into the field of ME research, but I can absolutely understand the strength of feeling that might lead to this. If a patient diagnosed with cancer or type-one diabetes was offered no other treatment than anti-depressants or cognitive therapies it would be seen bysociety as nothing short of criminal and diversion of funds from biomedical research into justification of psychological therapies would only compound the injustice. This wouldn’t be considered acceptable for any other illness and yet that is exactly what is happening for patients with ME. Although cognitive therapies and anti-depressants may have an important role to play in helping patients with any chronic illness learn to live with their condition or manage co-morbid mental health conditions, psychiatric approaches alone simply aren’t going to cure the underlying biological disease.

The simple truth is that, whatever its cause, ME ruins lives. For healthy individuals who fail to see why they should worry about this issue, consider this; ME costs the tax-payer millions of pounds every year in health and social care costs, lost labour and disability payments, a cost that will continue until a cure or effective treatment can be found. If, as the research suggests, ME has a physical, not psychosomatic cause, then the psychosocial approach can only obfuscate the issue, preventing research that might one day lead to a cure, or at least a better quality of life, for people living with this illness. And that, in the end, is all that patients with ME really want.

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18 Responses to Mental Health and ME, Part One: ‘All in the Mind’

  1. lucieware says:

    YES. I’m very grateful to you for writing a well-researched, balanced and rational article. This is precisely what I feel and it’s so important actively to engage in the debate in a rational manner. Do you mind if I share this post on my blog (Chronic Italia)? You’ve put more time into doing research than me and I wouldn’t want to express your point any other way. Please keep up the writing, you’re documenting serious ME far better than I could have during my relapses. It’s also such a relief to know other people share my symptoms (which, granted, fluctuate enormously) – it reinforces in my own mind that they’re not psychosomatic!

    • I’m so glad you found this post helpful. Please feel free to reblog or share on social media. I agree that rational dialogue is of vital importance in raising awareness of ME and persuading other people to take the ilness seriously. Likewise I think it is important for ME patients at varying levels of severity to share their experience (as you are on your blog) so people can gain a broader perspective of the impact ME has on each individual’s experience. .

  2. Reblogged this on kraftycatcreations and commented:
    Thoughts on the Mental Health and ME misconception.

  3. An excellent post. It truly is astounding at how little money is being spent on finding answers when as you correctly point out how much our governments are spending on benefits etc.

  4. lisagasko says:

    Unfortunately having a chronic disease with no known cause is often thrown into the psychiatric category. I believe many of these disorders are caused by unknown viruses. I am convinced my fibromyalgia was caused by a virus, but many health care professionals are skeptical of my thought. I really don’t care what they think. It was only after I found a nutritionist who worked with my disease that I got straightened out and can now enjoy a full life again. Keep the faith that you will find the right person with the right knowledge of your disease that will drastically improve your life. It is possible.

  5. Bunny says:

    I’ld like to add that in America, there is no debate about CFS or CFIDS (what we call ME) being a physical illness. It is considered a very serious, life altering physical illness without a psychiatric element. Check out Dr Anothony Komaroff of Harvard and the CDC, he has some wonderful talks on youtube about CFS. As an American, I find what is going on in England regarding ME truly mind boggling. For the last 20 years, all the press coverage, all the docs I have seen, all the patients I have met, know that it is a very serious physical illness.

    • I am glad you have had such a positive experience of doctors in the US. Unfortunately I have spoken to many American patients whose own experiences have not been the same. It seems to depend entirely on the individual doctor that you see. A few decades back ME was recognised as serious and physical in the UK while America took a psychiatric approach but since then the UK seems to have regressed to psychiatric views. Of course there are also many doctors here that recognise it as a physical disease but they seem to get very little airtime in the UK media which is where most people form their opinions from. I hope that the increased clamour of the psychiatric lobby here in the recend years is because they know they are losing the fight.

    • leelaplay says:

      Bunny, I am very glad for you that your experience in the US is that ME(CFS) is considered a physical disease and not a psychiatric illness. I’ve been online for many years and hear continually of patients in the US who experience the opposite. If you go on any of the forums you will read daily of patients going for diagnosis and being told either it is nothing, or it is psychosomatic.

      While research is looking very promising – the recent Stanford and IACFSME conferences and upcoming Invest in ME conferences provide a good summary – most physicians know nothing about ME(CFS), the CDC Toolkit is out-of-date and wrong, recommending CBT and GET, not including most of the current treatments, tests or research, and most institutions are still out of date as well, for eg the Mayo clinic has cleaned up their language a touch, but have similar problems as the CDC Toolkit. At least in the last year the CDC deleted the page long list of tests that ME(CFS) experts use, which the CDC had said were tests that doctors should not use! It would have been better if they had just retitled the page as tests to use.

      Dr Unger of the CDC has been involved in the CFI, 5 top clinics creating a biobank of samples and researching together from them, which is very promising. I believe Dr Lipkin said 3 papers are due within the next few months – Dr Montoya’s, the CFI and I forget the other, with the possibility of a biomarker in the rumour mills. Also, when she spoke at the Stanford and IACFSME conferences she said she thinks that CFS is too heterogeneous to have a single cause and suggests looking at ‘illness domains’ rather than definitions. So hopefully her involvement and the upcoming research papers will result in the CDC Toolkit being revised to be accurate within the next year or so.

      I hope that all Americans, people in all countries, soon are in a world where there is no debate. It doesn’t exist anywhere that know of except perhaps New Zealand due to the work of Ros Vallings, with Australia improving with the new government, university and scientist collaborative clinic for research and treatment under Sonya Marshall-Gradisnik.

    • Ess says:

      Although, there is much evidence exploding and pointing to ME/CFS as a biological illness, currently in America–the politics that have enmeshed and buried ME/CFS are at a critical point–and this will have an effect world wide on ME/CFS people/patients. The US government, Department of Health and Human Services has rammed in a contract to the IOM (Institute of Medicine) to redefine ME/CFS. The IOM has NO expertise on defining diseases–the IOM has been ‘set-up’ in this task to provide a predetermined outcome using only allowed materials/information in this ‘evidenced-based’ review. This is only the second disease that IOM has been tasked to define–the first being Gulf War Syndrome; that was a disaster.
      In fact, recently, 50 ME/CFS (international) Experts and Researchers in an unprecedented action–sent letters to (then) Secretary Sebelius of HHS–calling for the adoption of the CCC (Canadian Consensus Criteria) which already defines ME/CFS–and the STOPPAGE of the IOM contract. The ME/CFS Experts and Researchers’ strong advice to the HHS has been DISregarded and ignored.
      Ohh, and so as not to be ‘biased’ the committees for redefining ME/CFS have been staffed with a majority of NON-Experts in ME/CFS to serve on the IOM and P2P committees–and this includes psychobabblers placed on the IOM committee. It is the ME/CFS Experts and Researchers hold the key to ME/CFS — and they spoke up against the IOM in an unprecedented action!!
      There is a ‘psychological’ bias that the HHS, CDC and NIH want to achieve with ‘redefining’ ME/CFS–based on politics, hiding the truth about ME/CFS, insurance and disability claims, etc.
      The colossal problem with ‘misrepresenting’ ME/CFS as a psychological disease prevents much needed research funding to get to the biological answers to ME/CFS–as we remain very ill and locked away in our houses–AND the disease continues to spread–estimates of 17 million world wide. Children and teens get locked into this disease too–their young lives stolen away!
      Houston–we have a problem here!
      If you would like to help, below is a link to the petition to STOP the IOM contract and adopt the CCC definition of ME.
      There is also a link to the Thunderclap campaign set up for making our voices heard through FB and Twitter–same message STOP the IOM and adopt the CCC. If people are not on FB or Twitter–e-mailing the links to friends that are can help spread the word; our peeps that see us stuck in non-life with ME/CFS year after year, decade after decade, want to help us. Thank you very much if signing the petition and signing up for the Thunderclap are something that you can do, as well as spread the word to others.

  6. Thank you for this. You have given many people reason to hope. One thing I want to mention is that there are many tests for diagnosing M.E., because there are so many symptoms. One test, I believe, from all the reading I do, won’t do it. So glad you are feeling better. Thanks again for your wonderful blogs.

    • Thanks for making that point. I didn’t go into detail in the post as it was already getting quite long. There are a lot of abnormalities that have been found in ME but the multiple specialist tests required to find these aren’t sanctioned by the UK’s National Health Service for patients with ME. If there was one simple test that could diagnose ME, the NHS might consider it cost-effective but because MRI scans/spect scans/mitochondrial testing etc. cost thousands of pounds the NHS won’t fund them as there is no effective treatment even if the diagnosis is irrefutably confirmed. As a result, though their symptoms are very real, few ME patients in the UK have objective proof of their illness and as a result it isn’t always taken seriously.

      • Very true about the “no effective treatment” unfortunately. Money is the underlying reason why M.E. sufferers are faring so poorly; of course, in more ways than one. Here in the States, our Health and Human Services Department has that contract with the Institute of Medicine (IOM) to settle once and for all, the diagnosis criteria for ME/CFS. They refuse, at this point, to recognize the CCC’s criteria; and also fail to recognize the WHO (World Health Organization) classification of M.E. as a neurological disease. CFS is not a disease, the WHO claims: it does not exist. It describes CFS as “a heterogeneous group of patients suffering from a vast array of different diseases which cause fatigue.” We have a great deal of work to do, as advocates.

  7. Interesting, Simon Wessely already removed that link!

  8. Claire says:

    For a very long time I secretly believed that my symptoms were psychosomatic. Before I was diagnosed with CFS I had spiralled into an almost bi-polar state of being; very up one day, very down (and tired) the next. It took years of working with psychologists to help me separate the feeling of being tired with the feeling of incredible sadness. At times it is still strange when I feel sad but not tired. Fortunately I’ve become able to be tired without feeling sad, as I now spend most of my days this way!
    Thank you for your thoughts on this topic – even though there is so much research pointing to a physical condition, the information available to GP’s is still archaic. I have moved and am seeing a local doctor. Her first action was to send me to a psychologist and to recommend exercise physiology. Extensive testing, investigating my symptoms?? Nope, psychologist will sort it all out…

  9. Great article, very well-written and considered. I think it is a case of some arrogant psychiatrists thinking that, because THEY are trained in psychiatry, everything unexplained must have a psychiatric basis. It’s part of their God complex. A few years ago, I began to suffer with co-morbid severe depression (alongside my much longer standing and diagnosed CFS/Fibro). I was eventually admitted to psychiatric hospital, but the psychiatrist decided to overrule my previous diagnosis of CFS , and told me I had depression and ‘somatisation disorder’ ie. I was wrongly interpreting my emotional pain as a physical disorder. She didn’t seem to understand it is possible and indeed common for people with physical chronic illnesses to develop depression, choosing instead to tell me it was ALL in my mind, and ‘seemed very real to me’. It was only after I got out of hospital, six months later, that a new psychiatrist changed the diagnosis back to ‘Depression AND CFS’. He really was amazing, and brave in my opinion, to stand up to the hospital psychiatrist. I think that I was in hospital for MUCH longer than I needed to be, as Im pretty sure part of their reason for keeping me in there so long was that I still insisted I was in pain and exhausted much of the time.
    In other words, I agree that the view that CFS is some kind of psychiatric disorder can have very real and damaging consequences for sufferers.
    Keep writing articles! xxx

    • Thanks for sharing your story. Co-morbid depression is one of the issues I will be writing about in the second part of this article coming soon.

      It seems all too common that patients who go on to develop co-morbid depression end up having their original diagnosis overturned despite the fact the two separate issues developed at different times. Also patients that don’t have depression are often assumed to have it anyway. I myself had a doctor try to pin my symptoms on grief over my grandfather’s death. As he didn’t die until more than a year after my illness started I guess that makes me psychic! ;0)

      • Yes, it makes me wonder WHY these doctors and psychiatrists are so insistent and eager to pin it all down to a mental health problem. Is it partly sexism I wonder? A hangover from Freudian psychiatry when every woman with an illness was dismissed as ‘hysterical’? The way we are sometimes treated by the medical profession seems to me to show a total lack of respect for the patient, an even an eagerness to downgrade and therefor dismiss their symptoms as ‘merely’ a mental health problem. They also get to *classify* us as well, and tick their frikkin’ boxes.
        I also wonder if because there is no workable test for CFS/fibro, the label is inevitably used as an umbrella term for every disorder they cant test for, and people with genuine CFS may get lumped together with the percentage of people who DO actually have somatisation disorder, or people that do seem to WANT to be ill. I have met two people like this, who have clearly jumped on the CFS/fibro ‘bandwagon'(rickety though it is) because they get a bit achy and a bit tired or a bit down, and they basically want some attention, some drama, or some money (good luck with that last one). It is only because I know both of them so well, and have listened to them talk about their problems for hours on end, that I feel I can make this judgement btw, which I know sounds pretty harsh and un- PC – I certainly would not make it lightly. They make me so angry, and there must be a fair amount of these types of people out there. If a psychiatrist met these two people, it is perhaps understandable that she would then lump all of us together. I really hope they develop a workable test for CFS and fibro soon. x

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