Why are those pretend-sick people so darned UPPITY?

Damian Thompson has recently used the Daily Telegraph to highlight the difference between blogging and journalism.

“… medical science has no great difficulty explaining what’s wrong with most people diagnosed, or self-diagnosed, with ME. Their brains create a debilitating fatigue and pain that often correlates with certain personality traits. For example, there’s an overlap between ME and eating disorders.”

I habitually avoid reading editorial pieces about ME/CFS by people who have no expertise in the condition, and this entirely poisonous and ignorant piece from the pen of a man whose specialist subject is religion, not medicine, is a very good example of why.

“This is a tricky subject for me, because a colleague has been diagnosed with ME. He’s seriously ill: the breakdown of one part of his body after another cannot be explained by psychosomatic fatigue. On the other hand, I suspect that his condition has only been described as ME because doctors haven’t pinned down what’s going on.”

Yes, Damian. What you have just described is ME/CFS. Your friend has been diagnosed with it because he has the same thing the rest of us, who have also been diagnosed with ME/CFS, have.

That is what it is like. Nothing works. Your muscles don’t work. Your blood pressure doesn’t work. Your guts don’t work. Your immune system doesn’t work – or it is in hyperdrive and trying to eat you. Your eyes don’t work. Your ears don’t work. Your brain doesn’t work. Your hair falls out sometimes in handfuls. Your skin comes off, sometimes. Your muscles shrink as your body cuts back absolutely everything it might have to use energy to maintain. I piss blood pretty regularly, but since it’s not the sort of thing you drop into polite conversation I have no idea whether this is common. And you are in a lot of pain.

The whole point of ME/CFS is that “doctors haven’t pinned down what’s going on.” A diagnosis of ME/CFS means, very precisely: “We see this list of common symptoms in some people. We don’t know why.” The name for that list of symptoms is ME/CFS.

In order to get a diagnosis of ME/CFS you will have been subjected to a battery of tests over a long period. It is not unusual for people to wait for years for a diagnosis. Every standard test will have been run, and will have come back somewhere in or near the “normal” range. Thyroid, diabetes, liver function – if you get a half decent doctor they might do a full adrenal function run-up on you. I’ve been for ECGs (which came back odd, but not odd enough to warrant any action). The only thing that has ever come back as unusual from all the blood tests was “signs of a massive recent viral infection”, with broken and damaged blood cells. But that isn’t consistently the case and only appears after a massive flare-up. Nobody knows what it means. Nobody knows whether the virus in question is Epstein-Barr, or whether the Epstein-Barr flares because of some underlying other condition.

Welcome to the reality of life for anyone who suffers from this condition. There is no cure. The prognosis isn’t good. There is no palliative medicine, though many sufferers, with their spirits crushed flat by the brokenness of their bodies, their future wrecked, their ability to work or do anything which engenders self-esteem apparently ended, unable to maintain their relationships with family and friends, and usually in pain, DO take anti-depressants. I don’t myself, but I have every sympathy for anyone who does. This condition is a kind of hell.

If you scale your life back so you’re doing virtually nothing, you can pass for “healthy-looking” on the one occasion every couple of months when you manage to totter out and see someone. But that one trip out will likely cost you a fortnight or more of not being able to do anything. When I say “anything”, I include things like “wash your own hair”, “cook food” or “properly digest food”.

The World Health Organisation classifies ME/CFS as a neurological disorder in the ICD-10, under Diseases of the Nervous System, just like Multiple Sclerosis and Epilepsy. The classification code for ME/CFS is G93.3.

It’s worth pointing out that both Multiple Sclerosis and epilepsy used to be classified as “hysterical” illnesses, back when we were ignorant about the physical causes of the symptoms. So did stomach ulcers, until it was discovered that stomach ulcers are caused by a simple bacterium. So did Porphyria. In fact the human race has a long and colourful history of classifying anything it does not yet understand as “madness” or “lies”, on the bizarre basis that illness is somehow a disorder of the soul or the will.

Well, we need to move the fuck away from that kind of pomo-witch-doctor thinking. A more lazy and self-indulgent response to people being ill is hard to imagine. Yet we see it indulged time and again in the press.

In the UK, the definition of ME/CFS was presided over by a psychiatrist named Simon Wessely, who made it his life’s work to define ME/CFS as a psychiatric illness. That’s psychiatric, not neurological.

The definition of our condition hinges on this point:

From the excellent Scot.ME:

There are over 1,000 institutions around the world designated as Collaborating Centres, the Institute of Psychiatry, London is one of them. These Collaborating Centres are allowed to make adaptations to WHO publications but have absolutely no authority to alter/modify classifications.”

and

“In October 2001 it was discovered that CFS/ME had been ‘unofficially’ reclassified as a mental disorder in a U.K adaptation of a WHO publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of Psychiatry, London. It was included under the classification F48.0 relating to mental, behavioural and neurotic disorders (neurasthenia).

“Despite numerous complaints being made to the Collaborating Centre of the Institute of Psychiatry, and ICD-10 classifications being mandatory in the UK, sales of the book were allowed to continue unabated for years until almost all 30,000 copies had been sold. Then and only then was an erratum slip issued. This misclassification also led to CFS/ME being wrongly classified as a mental disorder in the NHS Mental Health Data Manual. It is noteworthy that CFS/ME has once again been included in the 2nd edition of the ‘Guide’. However, the title of the book has been (conveniently) altered to include both mental and neurological disorders, and a few neurological disorders added.”

There was an obvious benefit to Wessely in doing this (who doesn’t want to be a country’s “pre-eminent expert” in something?); but the therapies he prescribed – Cognitive Behavioural Therapy (CBT) and the dreaded “GET”, or Graded Exercise Therapy – have caused a lot of patients more problems than they cured. GET has a dreadful reputation among ME sufferers, as it demands that the sufferer does precisely what they are unequipped to do – exercise. This approach has pushed many people from a workable, but very limited “norm”, back into full relapse.

I am assessed once or twice a year myself, by GPs who do not know me and are often not expert in treating ME/CFS. My worst nightmare is encountering a GP who has had no hands-on experience with ME patients, because they always toe the Wessely line, and insist on GET. Which I know puts me in relapse, because I faithfully tried it for the first three years I was housebound with this condition, and spent the entire time yo-yoing in and out of relapses. Yet I kept trying. I am not unusual in this. People with ME will try anything that might help them get better. We are – and I make no apology for this – desperate to get our lives back. All of us.

Wessely is pretty much a hate figure among ME sufferers[1]. His work may have been well intentioned, but what it has done is slap a huge mental health stigma on a condition which is unquestionably physical – Thompson’s article underlines this point. The friend he KNOWS who has ME – he is properly ill. The rest of us, whom Thompson does not know, are malingering nutcases.

Thompson’s view IS the public view, on this condition. In fact, we’re all suffering the same thing Thompson’s poor colleague is suffering.

This is the legacy Wessely has left us with.

There’s more to the anger: the fact that this condition is largely thought of as a psychiatric problem, both among the public and by GPs, has knock-on effects.

Firstly, there isn’t very much research into the physical symptoms. Where there is research and another theoretical cause is disproven, there is always a rash of editorial pieces taking (often with glee), the line that this effectively proves that people with ME are malingerers. This, and the desperate need people suffering from this condition have for there to be an answer, is why articles about ME are often met with vitriol from campaigners. Those articles are telling people who have no hope, that they still have no hope. It’s pretty soul-destroying, when it’s your life being written about in those terms. Some people react angrily to the news.

Secondly, many of us end up seeing GPs who have swallowed the UK definition hook, line and sinker, and who recommend courses of useless CBT and damaging GET for us.

Thirdly, our own friends and families often write off our physical suffering as something which, if we pulled ourselves together, would simply stop. As a choice. As something annoying we are doing to them. I don’t know anyone with ME who hasn’t lost most of their friends as a direct consequence. (Although the ones who stay are priceless, the best, the very best of humanity.)

So the fact that there’s a very vocal, bitter element in the ME/CFS community when it comes to poor journalism should come as no surprise. All those things we cannot do, you can do: you are free. You can walk about, eat what you like, you can have a love-life, you can pick up your children or go for a jog. You can go on holiday. You can take up a new hobby. You can read a book. And you can work. You are paid for your work. And what you choose to do for that money is further stigmatise us, for whom all those doors are firmly closed?

You bet we’re angry.

[1] Hardly surprising when you actually read what the man has said and written about ME/CFS sufferers: “Most CFS patients fulfil diagnostic criteria for psychiatric disorder. Other symptoms include muscle pain and many somatic symptoms, especially cardiac, gastrointestinal and neurological. …. Do any of these symptoms possess diagnostic significance? The answer is basically negative… The description given by a leading gastro-enterologist at the Mayo clinic remains accurate. ‘the average doctor will see they are neurotic and he will often be disgusted with them.'” – Wessely S: “Chronic fatigue and myalgia syndromes”, in N. Sartorius et al (eds), ‘Psychological Disorders in General Medical Settings’, publ. Hogrefe & Huber, 1990.

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About chiller

Rachel Coldbreath spent 20 years working internationally as a technical specialist on large data collections for law firms, before becoming disabled. She blogs on a variety of topics from the news and politics to gardening and how very annoying it is, being disabled. Habits include drilling holes about 1mm away from where they ought to be, and embarking with great enthusiasm on tasks for which she is neither physically nor intellectually equipped.
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26 Responses to Why are those pretend-sick people so darned UPPITY?

  1. DavidG says:

    Wonderful piece, with a telling analysis of the damage Wessley and the other hacks have done.

    • chiller says:

      I suppose I’m really howling into the abyss as I doubt Thompson will ever see it, or if he does, that it will change his mind – and god knows he’s not alone, there are some truly vicious pieces of journalism out there about this condition. But perhaps one person’s perception will be changed by reading it, and that would be good.

  2. Thank you very much for writing this. My sister was diagnosed with CFS earlier this year, after years of frequent illnesses and acute exhaustion. She was previously an active mother of two – one child being an autistic teenager – but now she has had to have disability adaptations in her bathroom, has had to invest in a wheelchair and may have to give up her beloved motorbike. She has a stick for her good days and – unlike myself – often needs it around the house. She’s in constant pain, is badly depressed and frustrated about not being able to do the things she used to do, is upset about all the weight she has (inevitably) gained and resents having to rely on medication just to be able to get out of bed in the mornings. Her eldest child – now a young mother of two herself – has to look after my sister.

    Made up, my arse. Let Thompson see the pain and frustration in my sister’s eyes and THEN dare him to say that.

    • chiller says:

      I am so sorry to hear about your sister. It’s a cruel condition, and there are a lot of people making stupid remarks and assumptions about it, further undermining people who already have far too little support available.

      • Yes; every time I see a journalist write about it and say it’s a yuppie disease for lazy people I just want to find them and punch them. My sister was Supermum for years, always rushing about and doing All The Things and getting out and about and enjoying herself, and now she doesn’t dare make concrete plans because every day is different. She and I both have epilepsy, which takes enough of a toll on the body and mind, so for this to land on my sister as well is tragic.

        Nobody has the right to judge unless they’ve been through it or had to care for someone who has.

      • chiller says:

        Yes, the inability to make plans is maddening – and nobody really gets it, the fact that you can be fine at 1pm and scraping the bottom of the barrel at 4pm. There is a dreadful element of human nature where the tendency is to blame people who are poor or sick for being poor or sick – very little empathy or kindness about in the world.

  3. Lebeautemps says:

    Would you mind if I put a link to this on the Behcets forum? Many BD people have commented about the appalling attitudes of their families to their condition and your articulate view would bring many some comfort through shared ground.

    • chiller says:

      Oh, please DO. I think what I’ve said here applies to many (too many) poorly represented, poorly reported, poorly supported conditions, and I think all of us share similar experiences with the press/public too often dismissing anything that isn’t cancer or a heart attack as some form of “malingering”.

      • Lebeautemps says:

        The forum mods just bounced my post with the link, on account of the presence of f word and refs to religion. They felt it *could* upset some people.

        I am lost for words.

      • chiller says:

        AMAZING. Nice to know they have their priorities straight.

  4. Lyra says:

    Your line ‘We are – and I make no apology for this – desperate to get our lives back. All of us.’ nearly brought a tear to my eye, I’m one of the lucky (or luckier) ones, I have got better from M.E but it was a long & tortuous path & I don’t really think I’ll ever be back to my normal 100 % healthy self. More acceptance & support is needed, desperately.

  5. Rob says:

    I wonder if that will add fuel to his fire, that we are all Uppity. I try not to be. My skin is thick after all these years and I remain on both sides of the fence, people have opinions, of which they are entitled. If folk hear me saying how ill I am and then see me doing something social or whatever, they may think I am over egging the pudding but such is M.E that they don’t see that payback and I no longer talk of it, scared of losing any friends I have left possibly! I have even thought it in my head and felt ashamed and for years was told stomach problems were, years on basically it was found the whole colon was immobile and more besides and in a desperarado mission to get well out it came. I hoped it would cure M.E too but alas not this time. I’ve had brain ‘re-training’ . I’m open to suggestion but one thing I am not is ‘pretend sick’ – I’m pretending not to be half the time for fear of society’s opinion and everyone suggestions of how to get well. I’ve been out socially on 2 occasions this year and a few lil walks, I sometimes go to the cinema (something I couldn’t do for 8 years!) . People judge whatever way- either you are out and about and NOTHING is wrong with you (but they don’t see they payback) or you just think you are ill and that’s why you THINK you have to rest. I miss a lot of things but what a miss a lot is not getting ‘judged’ all the time.

    • chiller says:

      Yeah, I think the fact that people don’t see the consequences of our one night out (or in my case, digging the allotment) is key. I do tell people when I’m laid up, but nobody ever sees it, or sees me when I’m immobilised. I’m too frickin proud to let them.

      I wish the problem were that we think we are ill. My problem is that the minute I get a glimmer of usable energy I go charging off and do all the things I couldn’t do for the three weeks beforehand, like a giant idiot. But gosh, it feels so good to be alive for one day.

      • Lebeautemps says:

        It’s sad that you’d get more sympathy if you hit the clubs and had to nurse a hangover the following day, purely because most people cannot relate to or refuse to respect your experience. The respect thing is simply rudeness. People need to behave better.

      • chiller says:

        Absolutely. There is a roaring dearth of empathy in modern society. I really do view it as a sort of cultural mediaeval hangover.

      • I really, really feel for you.

        Grave’s disease was similar, in that I didn’t look sick, and I could do some things most days and most things some days. I was told I had a “victim mentality” by an ex-boss, colleagues thought I was bunging it on to get out of work I didn’t want to do, a stranger in a shop said “you don’t look sick to me” when I mentioned being off work. And yet I was seriously ill.

        I was lucky though: I had a real diagnoses and medical professionals who knew what was wrong with me and how sick I really was. There was treatment available, and eventually science made me better again. I can’t imagine how much harder it would be to have none of that as well as being even sicker than I was.

        I lost 5 years to Grave’s and I’d have done anything to get that time back.

        xoxox

  6. Thank you for being so “inconveniently real.” Yours is an articulate and informative voice. I have been sick with M.E. for 27 years, and I am grateful to people such as you who tell it like it really is. Although I am in the USA, I am still harmed by the Wessely legacy in the U.K. Unfortunately, what Wessely and friends do in the U.K. spreads to the U.S. Yes, you bet I’m angry.

    • chiller says:

      I’m surprised and horrified that that legacy has reached so far, although god knows the US CDC have done everything in their power to minimise and downplay the condition in order to pander to the rather horrible US medical insurance industry (coining the term “Chronic Fatigue Syndrome” is probably one of the biggest undermining acts sufferers of this condition have endured, because it means everyone says “Oh, I get like that too, when I’m really tired.” Well, unless you’re so “tired” your hair’s dropping out, no mate, you don’t.)

      Thank god for the internet, which gives us a voice we can all use together, and lets us find one another.

  7. Katharine says:

    Such a great piece of writing. Thanks for expressing so well what we all feel. Not only is the illness with its symptoms so difficult to deal with but all of this other stuff, the perception of the illness or misperception is like a double whammy. We have to cope with the views of us being malingerers and people that don’t try hard enough. Unfortunately I’ve had first hand experience of the Wessely school of psychiatrists being under the care of his sister in law Professor Garrelda. I first saw her after I was diagnosed at age 7. Then at 12 she put me in a children’s psychiatric unit for 7 months. I must have been told every day for 7 months that I wasn’t trying hard enough to do such and such or if only I tried harder I would be able to do it. That is a pretty soul destroying experience for a child. It is so misguided. Because of her attitude, it seemed that staff also adopted the view that I was a child that just didn’t try or was ill because of personality disturbance, this then filters down to everyone in your care so that you are treated with disdain and contempt. I don’t think they will ever understand the damage they have caused through their actions, as they believe they are trying to help us.

    • chiller says:

      Yours is such an unspeakably sad story – I had heard that there were children who had been forced to exercise etc, but hadn’t met anyone who had experienced it. I can only nibble at the edges of imagining how awful that must have been for you, as a child, and how unprotected you must have felt. I hope that both the condition, and your life, have improved since. x

      • Katharine says:

        You have a really great way with words Chiller! Nibbling at the edges of imagining, love that!!

        It is so sad what happened. But what seems sadder or scarier is that their attitude that led to that type of ‘care’ hasn’t really changed. Its terrifying. But like you’ve said the internet is a great resource for us to try to educate people, to claw back a little bit of understanding.

        I do feel as though I want to do something useful with those experiences I had but I’m not sure what, a way to educate people but I guess I’m lacking in confidence in going about it. If you want to know more about what happened or have any questions, feel free to ask, I don’t mind. I suppose the fear is still there with me that if I express how terrible it was being in the care of said psychiatrists I will just be labelled as exaggerating or not being compliant with treatment or being attached to the sick role. It just screws with your mind, doesn’t it?

  8. Mary Schweitzer says:

    Thank you – this was a superbly written and well-thought-out piece. If only it could be published where outsiders would read it.

    I get Wessely – the narcissist – he benefits from the disinformation he spreads. It’s the others I don’t get, like this guy. He must know that he’s in over his head here – that he has no experience at all with the disease – no, I take that back; the only experience he has run AGAINST the narrative he just HAS to burble out. What if he’s wrong? Why take that risk – why be so overtly cruel to and about very sick people? That’s what I don’t get. Is he surrounded by guys who slap him on the back and laugh with him? Does this make him “in” with the “in” crowd?

    Why so much ignorant hostility? There are really good informational websites out there – Invest in ME, the HHV-6 Foundation, the Alison Hunter Foundation (examples from the UK, US, and Australia). Does he have the guts to watch a documentary on this? We have one for him.

    But he won’t educate himself. He’s content just to spew ugly nonsense. And you say he’s a RELIGIOUS writer? What kind of religion condones this behavior?

    I don’t understand it, but I thank you for your words. This will come to an end. As Martin Luther King said, “The arc of the moral universe is long, but it bends towards justice.”

  9. Jackie Nance says:

    guess what!? maybe this will help – we now have the just released MYALGIC ENCEPHALOMYELITIS/ME (adult & paediatric) International Consensus PRIMER for Medical Practioners” (as a companion to the Myalgic Encephalomyelitis International Consensus Criteria/ME ICC, published in the journal of internal medicine, aug. 2011). everything you ever wanted to know about ME – with excellent recommendations on appropriately treating our fragile ME children, as well! (‘ME’, formerly known as CFS/ME, ME/CFS, CFS/CF etc). please share widely! http://www.hetalternatief.org/ICC%20primer%202012.pdf

  10. Erik Johnson says:

    How can a syndrome that lists psychiatric disease as a condition to be ruled out in the USA
    be magically transformed into a psychiatric syndrome in another country?
    It must be some kind of magic, because science doesn’t work that way.
    ——————————————————–
    The 1988 Holmes Definition for CFS
    Chronic Fatigue Syndrome: A Working Case Definition
    Ann Intern Med. 1988; 108:387-389

    Case Definition for The Chronic Fatigue Syndrome

    MAJOR CRITERIA

    Other clinical conditions that may produce similar symptoms must be excluded by thorough evaluation, based on history, physical examination, and appropriate laboratory findings. These conditions include …..
    ; chronic psychiatric disease, either newly diagnosed or by history (such as endogenous depression; hysterical personality disorder; anxiety neurosis; schizophrenia; or chronic use of major tranquilizers, lithium, or antidepressive medications);

  11. sue smith says:

    I can’t believe cfs has been around since the 80’s and people are still so stupid – and I have them in my life, too. I got CFS when I was 30, couldn’t work for 10 years, and now have it back at 56 and I just don’t have too many years left to NOT feel well and waste life so why would anyone make it up. Yes, there are the fakes who get out just fine and want a problem in their life – well, they can have one of my 100 problems.

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