Chronic Fatigue Syndrome – In The Body or the Mind?

Is chronic fatigue syndrome a ‘real’ illness or is it the most recent incarnation of hysteria? Ever since chronic fatigue appeared on the scene, it has persistently been labelled a psychosomatic disease. This means that the medical establishment is not searching as actively as it might for a cure, and in any country where medical care is insurance based, there is very little attention or treatment available for what is a highly debilitating condition.

I fell ill in 1997 but wasn’t diagnosed until 2006. In part this was because I had a nasty suspicion it would be chronic fatigue but I’d heard too many cruel comments about other sufferers (particularly in a university setting) to be in any way comfortable with such a diagnosis myself. I can’t tell you how much I did not want to be lumped into that particular group, because it doesn’t matter what you’ve done before, or what kind of a person you are: it’s scary how willing people are to believe that you are ‘avoiding’ unpleasant situations, failing to show the proper moral backbone or downright malingering. By the time I was finally diagnosed, I’d been such a workaholic that the university was quite sympathetic. My family was a harder sell. When my husband rang up his mother to say I’d be taking time off work, she said ‘But isn’t this all in her mind?’ I had spent the past ten years trying to do work I loved and battle an illness that attacked every part of my body. You may imagine how I felt about the suggestion that I was simply neurotic.

But when it came to finding some treatment for myself, psychotherapy was one of the few possibilities. Oh I tried lots of alternative therapies, none of which got me anywhere, although they contained some of the secondary problems I was experiencing. But I knew stress and anxiety had had big roles to play in my falling ill and psychotherapy gave me the best chance of at least managing what I had and coming to terms with it. Without a place to make sense of what was happening to me, and a very sympathetic listener, I don’t know how I would have coped. If chronic fatigue has anything to do with depression, it’s because the illness is so overwhelming and so devastating that it knocks you for six. It has a tendency to attack driven, hardworking people who invest a lot emotionally in what they do, and who are very cut up when they can’t keep doing it. And as I remember all too well, to feel as ill as I did, with no prospect of anything at all that could be done about it, and this stretching out for months, years, into the future, is a pretty depressing prospect.

I’ve been reading Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson, an American journalist who has researched the rise and spread of the illness in America in painstaking detail, and the medical establishment’s failure to take it seriously. Johnson identifies an outbreak that seems to have begun in 1985 in Nevada and then cropped up in Boston, California and New York. The majority of the early cases were middle-class, middle-aged women, and given that they displayed a perplexing array of symptoms and no obvious, simple bacteria offered an identifiable cause, the official decision was that it was all in their minds.

I’ll add another significant factor into this: chronic fatigue doesn’t kill enough people. You have to die to be taken seriously in medicine, and whilst CFS can reduce people to bed-ridden vegetables or just destroy their quality of life forever more, it isn’t enough compared to, for instance, the other illness that was hitting the headlines about the same time: AIDS. Johnson also reports how the government felt there was surprisingly little lobbying by the sufferers of the illness, which is the way that ‘new’ diseases call political attention to themselves, and eventually, research money. No one seemed able to put two and two together that CFS-ers were just too sick and too tired to organise a lobby. Plus, the celebrity cases were not keen to identify themselves with the illness. Johnson reckons that the register of sufferers included James Garner, Robert Wagner, Morgan Fairchild, Cher, David Puttnam, Kirstie Alley and Cathy Lee Crosby, but few spoke out publicly. Cher was reported as falling ill for more than three years after a flu-like virus and another patient declared “I’d like to be in the room when you tell Cher… that her illness is due to ‘unachievable ambitions and poor coping skills.’”

Like just about everything else, medicine responds to public outcry, and if there is insufficient public sympathy, then nothing happens. It also responds, probably most rapidly of all, to the pharmaceutical industry. If scientists develop a drug that works, then the illness can be verified. But to do that, doctors need a simple yes or no diagnostic test, and that has never been forthcoming – it’s a vicious circle. Many people are unconcerned because they think it’s not contagious, although this book argues otherwise, with evidence of many health care professionals falling ill after handling blood samples. And then medicine has a very poor record of giving credibility to illnesses that involve fatigue (a word I dislike as it is so feeble compared to what it wants to describe). Multiple sclerosis was for a long time considered a psychosomatic illness, as was lupus and the Epstein-Barr virus. Doctors are also prejudiced against nebulous, debilitating illnesses in white women with private means (actually, they’re not alone), without being able to see that only women with enough money and sense of entitlement ever make it through the professional contempt and lack of interest to reach a diagnosis in the first place.

So where are we now? This book was published in 1996, and not a great deal has changed, except perhaps public opinion is kinder to chronic fatigue sufferers, and more willing to concede that an illness is involved. There has been significant research into possible viral or retroviral roots to the illness without any conclusive breakthrough, and tens of millions of people are said to suffer with some version of it, men, women, children, regardless of social situation. A significant proportion of them make up the long-term unemployed and the chronically poor. Less than a fifth of cases ever recover, and ‘these patients inevitably describe a series of readjustments or realignments of goals and expectations that would have been unthinkable prior to the onset of their illness.’

I include myself in that category – I’m much better, and I do much, much less, after a long fight against my inclinations. My own experience suggests that it is a disease based in the endochrinal system – adrenal exhaustion triggers a severe immune system response (when you feel ill, that’s your immune system working to evacuate the perceived threat) and because the illness is so intense, the entire hormonal system is thrown out of balance. There is also a psychological component, bound up in the trauma for some of us of suffering the illness, and built into the body’s defense systems which seem then to be on a hair-trigger (as is often the case with other autoimmune illnesses like asthma and hayfever). But given that I’m a smart enough person and ten years in therapy didn’t cure me, I don’t think it’s entirely psychological. There is some biological component involved that has yet to be found. I think I’m one of the lucky ones – for the rest I fervently hope that some solution will be uncovered.

25 thoughts on “Chronic Fatigue Syndrome – In The Body or the Mind?

    • So I think we have to keep on saying it, MD. I find CFS hard to own, but funnily enough it gets easier when I feel I’m speaking for a community of people who need to be heard. Together we are stronger, as they say.

  1. I can’t imagine how frustrating it must be not to have your condition taken seriously or how hard it must have been for you.

    You do a great service to other sufferers by writing about your own experience so eloquently.

    • Thank you, Karen. I was just replying to Marilyn above that I find it really hard to own CFS. I always want to pretend that I’m normal and there’s nothing wrong with me. But I don’t mind talking about it anywhere near as much when I think of so many other people out there who suffer from it far worse than I do. I’m ready to mount the barricades then!

  2. It’s hard enough being too tired to do the things you want to do when people take your exhaustion seriously; I can’t imagine how much harder it is if you’re not being taken as seriously.

    • It makes me think back to all those poor multiple sclerosis sufferers who were thought to be malingering. Isn’t that awful? Thank you for your sympathetic thoughts; they are much appreciated.

  3. To some extent I don’t see why it should matter whether it is body or mind or both. What matters is not being taken seriously, that matters a great deal.
    The mind is so powerful, in negative and positive ways, why couldn’t it be in the mind?
    I have a hard time seeing the difference between CFS, depression and burn out. It sounds like it is a bit of all of the three and linked to a virus as well. Maybe it is the mix that creates it? And, given the high risk for women, a hormonal component?
    Bottom line, it’s very scary – being ill, not knowing what it is and not being taken seriously.

    • Maybe it shouldn’t matter, but it does. It matters because of the stigma placed on mental illness by society. And in many cases, though not all, it is done precisely for that reason.

      When you are struggling with a condition that is, if not almost completely physical (not psychological or emotional), very close to it, there is a tendency to recoil at the idea. After all, if you went to a hospital with a broken limb, and they tried to tell you it was in your mind, it wouldn’t make any sense to you, would it? In spite of how powerful the mind may be?

      Well, this illness is as physical in nature as a broken limb. Yet when patients protest, THEY are accused of perpetuating the stigma foisted upon mental illness by others–and told that they should accept that there is nothing wrong with this, and that these sorts of illnesses can be treated much more effectively currently than ever before. So there’s no reason to have a problem with this.

      There’s a problem with this, and an awful lot of us have been inappropriately prescribed antidepressants. In some cases there is indeed depression present, but it is a secondary depression, not a primary one. That depression can cause many of the symptoms found in CFS does cloud the situation; however, it is not known to cause the symptoms found in Myalgic Encephalomyelitis. Which leads to the problems surrounding the differences in criteria, and the issue with exercising patients, something that can produce positive results in depression, but horrible results in ME.

      It would be far easier and simpler if the mind/body ideas applied in this illness, but they do not, at least not in any primary sense. Period.

    • Caroline – I quite understand what you are saying from the point of view that the mind and the body are in fact very hard to separate out. The point this book was making, and making very well and angrily, is that if doctors consider CFS to be a mental construct, then there will be no funding for research scientists to find a cure or any treatment. If people had continued to think of multiple sclerosis as a purely psychosomatic illness, there wouldn’t be the treatments available now that can in some cases slow the progression of the disease. There may well be all sorts of ways that CFS sufferers could be helped – but not knowing what’s wrong with you and knowing for sure there is no treatment to alleviate symptoms is pretty damn awful.

      As for the difference between CFS, depression and burn-out – the latter two do respond well to a combination of anti-depressants and exercise, whereas exercise can be very dangerous indeed for proper CFS. It’s become one of the ways that clinicians identify CFS, in fact, the response to exercise.

      And of course there is what Ahem says about the stigma attached to mental illness, which isn’t exactly helpful for anyone!

    • Thank you, Gavin. And I’m really sorry about your friend – I do hope he or she has received some effective care or treatment now. These illnesses are truly miserable.

  4. Sounds like an interesting book. Do you feel like it got at some of the most important issues? PMS used to be all in our heads until it was proven otherwise at last. When a disease is suffered mostly be women it seems that is the first response – it is all in their heads. I bet if the vast majority of people who got chronic fatigue were men it would be taken seriously. I imagine CFS is some sort of systemic disease, yes? And any psychological issues are likely in response to the disease. My fingers are crossed that it is taken seriously very soon and research is done that can really make a difference for you.

    • Stefanie, thank you for your wonderfully insightful comment. The problem with the book is that it is not organised very well – there are loads of tiny sub-chapters in each chapter which destroys any sense of narrative or sustained argument and just make it hard to read! So I feel that whilst it does some things very well, particularly make a case for the shocking lack of official intervention, it doesn’t really provide the sort of book about CFS that I could recommend widely. You are quite right that when a disease affects primarily women, it is given no credence. It’s pretty shocking to see the extent to which this old prejudice holds good.

  5. We see fibromyalgia all the time as a symptom that manifests itself after an trauma (like an accident). Chronic fatigue falls in that ambit of things for which there is no concrete test (such as an MRI or CT scan). Nevertheless, to the individual going through the illness, it is as real as it gets. I am confident researchers will someday find a mind/body connection to both chronic fatigue and fibromyalgia. (Indeed, how does one separate mind from body?)

    • Absolutely, Grad. If there was a yes/no test available, then we’d be getting somewhere. And I do agree, there is no way of separating mind from body, unless it is on a research grant committee….. when it comes to giving money, we’re still with Descartes.

  6. Thank you for posting about this and for being so open about your illness in general. This post is especially timely for me because I’ve been dealing with some murky, ill-defined health issues with no clear cause the past couple of weeks, and it’s good to hear about others’ experiences with such illnesses. My doctors seem to have found a treatable diagnosis for me, but I’ll have to try the treatment to know if they’re right.

    I think that illnesses that manifest themselves with symptoms like pain or exhaustion can be especially vexing because everyone feels these things to some degree from time to time, and it’s hard to know when it is serious enough to seek treatment. That’s how it was for me in seeking help for endometriosis pain years ago. I thought I was just a wimp about pain and needed to grin and bear it; it took others seeing me suffer to get me to the doctor. Doctors have since told me I have a high tolerance for pain, partly because of the years of managing endo pain.

    • Teresa – first of all I’m really sorry to hear about your health. There is nothing so taxing or distressing as feeling ill and not really knowing why or what to do about it. I do hope that your doctors will be able to provide you with effective treatment and very soon. I’m completely against chronic fatigue syndrome using the word ‘fatigue’. It’s like calling Niagara Falls a stream. It simply is inappropriate to the task and very misleading, because as you say, we all feel a bit tired from time to time, and CFS is nothing like that at all. BTW, I am also an endometriosis sufferer, although I’ve found diet and every sort of stress-reducing effort to have a markedly beneficial effect. I’ve also found it helps a great deal to concentrate on liver health, and to make sure my intake of antioxidants is very high. That’s another really dragging disease that can ruin your quality of life. I send much sympathy.

  7. So you have to deal with not only the physical and mental but the social ramifications of the illness as well. I had no idea that Cher suffered from it, too. It’s sad that when a woman has an illness like this the medical establishment just assumes it’s all in her head. Pfff. It’s no wonder with all that’s going on in your life now that you are feeling under the weather so to speak. I’m glad you write about it–reading about personal experiences is one of the best ways for others to begin to understand and hopefully changes be made.

  8. Well said. I’ve had it for 8 years, and have gradually learned to live and love life even with it, but it’s been a long journey. Sad but true what you said about it ‘not killing enough people.’ So many times I wished it was cancer so that people would take me seriously.

  9. I applaud the work that you’re doing to garner greater attention to the wide spread problem of Adrenal Fatigue. There is no question that the problem of Adrenal Fatigue needs a higher profile.

  10. Pingback: Living with Chronic Fatigue Syndrome – a survival strategy | Blog Blogger Bloggest

  11. I too was reluctant to accept my diagnosis due to the stigma attached to this disease, stigma that has worsened since the UK adopted the name Chronic Fatigue Syndrome instead of ME.

    I have been told by numerous mental health professionals that they can find nothing wrong with my mental health. Although any illness, psychiatric or not, will have a mental health aspect to its management, the pschological interventions I have received have made no difference to my physical symptoms. I therefore believe ME to be primarily a physical disease and from the journals I have read and clinical trial data I have seen the weight of medical evidence seems to support this.

    I would have no issue with the idea that my illness was psychiatric if there was any evidence to support this but I cannot understand why doctors who believe it is psychiatric are willing to send patients away without any support. It is a pretty damning indictment of attitudes towards mental health issues.

  12. Pingback: Let Me Introduce You To Chronic Fatigue… – Shaun's Blog Stories, on everything mental health from a personal, perspective view

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