Proud to be Ignorant?

The last thing I want to do in this blog post is provide more publicity for Suzanne O’Sullivan’s ignorant meanderings concerning ME [1] but I’d like to make a broader point regarding the inability of parts of the medical profession and their cheerleaders in the media (I’m talking about you David Aaronovitch) to accept that ME is a physical disease demonstrating numerous organic abnormalities.

What I find interesting is the apparent need in modern society to disparage a large group of chronically ill people. Why do the likes of Dr O’Sullivan or David Aaronovitch, and others too numerous to mention, feel the need to continually use their positions of power and influence to victimize and abuse a group of severely ill patients, some of whom have died from the disease? Have they any concept of the upset and despair they can cause? Having your life stolen by an awful disease, feeling far more ill than you’d have believed possible in days long past and then reading or listening to such damaging and intellectually vapid propaganda, may induce profound despair, enough to make some want to end it all, and why? So that someone can promote their book by causing controversy, it is not surprising we can get upset.

If one looks at things dispassionately, not easy if you’re suffering from the disease they so readily disparage, it is a strange thing; to spend your life and/or career insisting that an illness is all in the sufferer’s mind, even as the scientific evidence showing that it is not becomes overwhelming. No doubt considerable benefits can accrue from adopting such a position, Simon Wessely is hardly starving on the street, having done wonderfully well in building a career upon insisting every condition/disease under the sun is illusory, merely the construct of the sufferer’s disturbed mind. It is tragic he wasn’t practising in centuries past; the number of plague or smallpox victims who could have been reassured as they gasped their last breath, that it was all in their minds and a consequence of false illness beliefs, would have been vast.

Lest we forget (unlikely) ME has been defined as a neurological disease by the World Health Organisation since 1969, thousands of peer-reviewed papers have been published since then confirming its organic pathology. Yet still we endure ignorant banalities trotted out by the likes of O’Sullivan; she cannot even claim originality, I’ve been hearing the same nonsense for nearly thirty years.

We all want to be healthy, to be able to live fulfilling lives, work at a job we enjoy, have a family, go out when we want to go out, does the average healthy person realise what a great privilege that is? Probably not, one of the few positives of being chronically ill is the increased appreciation of the small things in life. Can there be anything more depressing than to be stuck indoors feeling like death while the world passes us by, all too quickly (I’ve now reached the age where decades seem to fly past, hopefully the cure for mortality will be discovered soon).

I am currently involved in researching Parkinson’s disease (PD). It is a horrible, debilitating condition, affecting a sufferer’s motor function significantly and featuring several other unpleasant symptoms mainly due to reduced production of the neurotransmitter dopamine through the death of dopaminergic neurons. It is not known what triggers the neuronal cell death, there is no biomarker and the primary diagnostic confirmation is how well a patient responds to treatment with the dopamine precursor, levodopa. In other words, there is no simple blood test to confirm the condition, there is no cure, (though unlike ME, there are several effective drug therapies for treating symptoms*, at least in the first few years following diagnosis), and its aetiology is unknown. I mention this as PD patients are generally treated with dignity and respect by the medical profession and the media, no one doubting that they are ill, despite PD sharing several of the criteria that make ME so easy to dismiss. It can also present with several symptoms, yet I frequently hear from medics that any illness involving more than three or four symptoms is probably psychosomatic.

‘When we are unwell, we tell ourselves that if we adopt a positive mental attitude, we will have a better chance of recovery. I am sure that is correct’**[1].

Well no, however sure you are Doctor that is in fact incorrect, basing one’s views on belief or ‘how I feel’ is problematic. There has been considerable research investigating whether or not having a positive mental attitude makes any difference when it comes to recovering from serious illness and results suggest it does not[2,3].  It is patently idiotic anyway, as it would imply only miserable people would become ill, or certainly stay ill, and that clearly isn’t the case (Some of the healthiest people I know would make the unreformed Ebeneezer Scrooge appear the epitome of cheeriness).

If you enjoy good health, you’re very lucky. Now enjoy that remarkable good luck and do something useful with your life, abusing the chronically ill is not time and energy well spent, Simon Wessely may have wangled a Knighthood but neither he, nor his acolytes, will be receiving a Nobel Prize for Medicine and history is unlikely to look back upon such people kindly (one can but hope). The continued promotion of such incoherent and unintelligent nonsense no doubt boils down to the increasingly popular view in modern society that being ill is the sufferer’s fault. This type of book plays into the general abuse of the sick and disabled which is becoming ever more prevalent in modern Britain, you don’t have to be a conspiracy theorist to detect a connection and it is long past time that such abuse ceased.

*Hopefully things are about to change on this front

**Thank you to Stephen Wright for drawing my attention to this passage in the book

1) It’s All in Your Head: True Stories of Imaginary Illness. Suzanne O’Sullivan. Chatto and Windus (2015)

2) http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer

3) http://www.webmd.com/cancer/news/20040209/attitude-doesnt-affect-cancer-survival

16 thoughts on “Proud to be Ignorant?

  1. Moira Jones

    It was such a relief after suffering for many years and being told it was “All in my mind” to discover that it wasn’t! I had almost convinced myself that I must be really crazy if my mind could cause such suffering and make me so sick. I’m very grateful to all those who have fought against this and hoping that those who were responsible for the Psychiatric opinion will yet have their noses rubbed in the mud! Thanks to all who are still fighting to have it recognised and I hope that many sufferers will not have to face decades before they can be helped.

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    1. Utting Wolff Post author

      I’m probably just a complete egomaniac (Geoff) but I never believed any of the medics who told me it was all in my mind, I thought they were all idiotic, which to be fair they were 🙂 I’m sorry you suffered so Moira.

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  2. velogubbed

    I do also worry about the effect this kind of cruel commentary has on severely ill patients, who have no respite from ME at all, I don’t honestly know how they cope. I actually think O’Sullivan has met few actual patients with ME, this may be the most interesting passage in her 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 classic Ramsay-ME (in 1990s 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 offered her. 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’.

    Her apparent lack of contact with patients who actually have ME – coupled with not following the science – would perhaps explain why she felt that including ME in a book of imaginary illnesses was acceptable.

    Still indefensible, and Aaronovitch is bizarrely wedded to the Wessely narrative, not sure why, but he has no clue of the harm he does, and I doubt he cares, or he would keep his mouth shut.

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    1. Utting Wolff Post author

      When I was severe and bedridden, reading this sort of twaddle was soul destroying and made my situation much worse as there was always someone I knew who’d read it and would often, most generously, send me a clipping of the article or review. Rachel may be an artificial construct, which is bad enough, but if she is a real person it’s worse in a way, as basing your views about a disease on a single case is totally unprofessional and unscientific. It is indefensible. Regarding Aaronovitch, I can only assume he’s good mates with Wessely or one of that crowd, he’s a complete idiot whatever.

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      1. Paul Humphrey Schofield

        If its any consolation I have also lambasted this halfwit.
        The constant array of half baked idiots, spouting verbal diarrhea is both sad and utterly irresponsible from the viewpoint of an imagined professional. I’m sure she gets paid, the rest is imaginary. If I wanted an imaginary illness I wouldn’t choose psychiatry or m.e I would choose a bad back, then I could act out a bad back. Has it ever occurred to these folk that people with m.e, get abused bastardised ignored and ridiculed. There is nothing anyone will get from a GP other than misunderstanding. So Hello right I’m a hypochondriac . Whats wrong with you asks the doc, well I have a bad back…thats right a bad back, not an illness I would know nothing about, not an illness I had never heard of, not an illness that when the name is explained to me I still dont know what it is. What moron (a psychiatrist obviously for one) would think that the best way foreword would be to choose an illness where they all get ignored bastardized, ridiculed or totally misunderstood. And lets remember, who turns up to see a GP and says ooo I think Ive got m.e and the doc believes them, derrr. Very few, the trouble is with no testing no knowledge GPs make diagnosis from wild uneducated guesses. Or they refer you to someone else who does exactly the same..Thats right, it’s guess the illness syndrome syndrome.. The GPs have no understanding of the illness yet they define folk with it…To me thats GP bad guess fairys down the bottom of the garden syndrome. Thats NHS Ingnorance Syndrome, or NICE Nonsense Syndrome.
        Fortunately there is an expert in the field of these professional syndromes, it’s me and I can set you straight with Facts not belief, and the only syndrome you will have is guilt, daft half baked idiot ignorant syndrome. Which isn’t so much syndrome as plain stupidity.
        Not sure if thats clear but I do try.
        Nice one Utting Wolff. And everyone else capable of clear thought.

        Liked by 2 people

      2. Utting Wolff Post author

        Hi Paul,

        Thanks for reading our post and for your comment. I totally agree, a point I’ve often made is that if I were going to choose an illness it certainly wouldn’t be ME, given the inevitable abuse and disbelief that automatically follows. I was of the opinion Aaronovitch must be one of the Wessely crowd and this pretty much confirms it http://www.rcpsych.ac.uk/traininpsychiatry/conferencestraining/internationalcongress2015/programme/thursday2july2015.aspx

        Geoff

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      3. tipsforme

        I have read a theory about why fibromyalgia /CFS are the chosen cultural expression of psychological pain (despite this being stigmatised and disbelieved), but I can’t remember what it was. I’ll reply again if I find it.

        It’s disappointing that our condition isn’t in our minds. If it was there would be hope for a fast recovery. We could have a Freudian style revelation and be all better again…

        Although these views are ignorant, upsetting and potentially block emphasis on biomedical research, in charitably minded moments I wonder if these people just desperately want us to get better? They prefer to believe the meme that CFS that is psychogenic/psychosocial and therefore in their remit to cure, rather than to stand by helplessly. In less charitable moments it seems like personal ambition and not letting go of an area of expertise despite the body of evidence against your views. Either way the answer maybe some psychotherapy or CBT (for them)!

        Liked by 1 person

  3. Mary Schweitzer

    Very well written.

    I was lucky – (haha) – I did not know I was getting sick, until I had a blackout in my office and came to as the creature from outer space. Nobody doubted I was severely ill (except the disability people, and even they had to give in to the evidence). I was able to get a good specialist early on, and have actually moved to remain near a good specialist and get treatment (which I have to pay cash for, so I am again, lucky). But by normal standards, I am not normal. I just can function now. And if I lose the medicine that keeps my immune system behaving itself, I’ll be back to bedridden, housebound. But at least they know I’m sick.

    These articles and books claiming ME or CFS are psychosomatic depress me because I fear it sets back, even longer, the time when there will be medical science to diagnose and treat people with this horrific disease. We desperately need funding. According to the IOM report, ME/CFS is one of the four lowest conditions with regard to NIH funding. MS gets up to 500 times more per person per year, and that’s hardly an overfunded disease. Male pattern baldness gets more. Why is that acceptable? Because of these articles and books, because of this propaganda, because of the censorship of the OTHER side of the bifurcated research literature which has been showing biological explanations for the symptoms for decades.

    In the US, even CDC admits that there are at least – at least – 850,000 undiagnosed patients out there. And we all know that of those who are diagnosed, many are getting no treatment whatsoever. What happens to the single mother of two kids who gets this disease? Teenagers whose families have no resources? Where are these people? That worries me.

    I noticed about a year ago that I was suddenly being contacted by patients who had become sick in the past five years. That was a new thing. Almost everybody I knew online with the disease had been sick much longer than that. It suggests to me that once again, there has been a series of cluster outbreaks, and because nobody is keeping score, once again, it will get away from us. These people should be getting whatever treatment we have NOW, because they have the best chance of recovery. But they are invisible.

    If Kate Hepburn hadn’t had Parkinson’s, I think that one would not have gone over easy, either, these days. My grandfather had Parkinson’s. It wasn’t an unfamiliar disease. BUT, it still was a while before the medical profession would admit that the new cases really were cases of Parkinson’s, because the prevailing theory was that it was caused by the flu epidemic of 1918. So how could younger people be getting it?

    I think one of the reasons that the public accepts the premise that ME or CFS is imaginary is because it is a very scary disease. No evidence that it is hereditary. No evidence that it comes from drinking, smoking, or engaging in “dangerous” behaviors. It just HAPPENS. And it is a life sentence. THAT IS SCARY.

    All those people who think if they think right, behave right, exercise right – they won’t get sick – have to get over a lot of cognitive dissonance to accept this disease. I think it scares doctors, too.

    So – we have to hope for the medical science to get far enough along it can’t be ignored any more. When Peter Rowe first discovered the correlation between NMH/POTS and CFIDS (as we called it then), his Johns Hopkins colleagues kept their distance. The university was not happy with him. But since he was working with teenage girls, they just ignored it. His research partner, a cardiologist at Hopkins, refused to take CFS patients because of all the grief he encountered.

    Now, I think Columbia and Stanford Universities have turned around on it. For different reasons, I think they see the potential for good research there. I also think they were enormously insulted when their researchers’ applications for funding were rejected by NIH outright – along with a letter suggesting the researcher take a seminar in how to apply for grants – these were experienced researchers who had received many grants from NIH, but apply for one for ME/CFS? you must be an idiot.

    So … it may be that we have reached a turning point. I hope so.

    Thank you for your blog. It was a good one.

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  4. sasson1

    I engaged with the supposed ‘treatment’ for ‘whatever is up with me?’. I’d had a nervous breakdown because of the neuropathic pain and the other symptoms. I’d 2 children and work to go to and what was I to do?

    Some years later, a G.P. accidentally increased my anti depressant by half. I was called into the surgery to see him, and he apologised profusely, but I thanked him because I’d never felt better psychologically. Some time later I went to see him again, still feeling contented despite my illness. I asked him, ‘If my condition was caused by my mental state, why am I still so ill?’. He said that he couldn’t tell me.

    I’ve had a lot of therapy now, primarily due to a horrific thing that happened to my family in the early 90s. If I start going downhill I get onto the moodgym and do some intensive CBT (https://moodgym.anu.edu.au/welcome); I’m soon back on my feet again, at least psychologically.

    No one can say that it’s my mental health that are causing the symptoms, but then it still happens. When I last went to see a pain specialist/denier, I had that form to fill in first about depression. None of my answers were indicative of someone who was depressed. My appointment was for 7pm in an evening, in the end, I was called at 8.30pm; they were even starting to turn off the lights! Of course, by then I was feeling very poorly indeed, but I answered all the questions about my job, background, physical symptoms. I felt it was a really positive meeting, that the pain specialist really understood what I was going through. I was badly mistaken about this.

    I was called in to see my G.P. where I was given a ‘dressing down’. I was shouted at. I was told that I didn’t have the symptoms I claimed. When I politely challenged this, the G.P. said he could prove it and printed off the pain specialists letter, thrust it into my hand and I left. There were worse things that he did, like banning me from calling an ambulance when NHS direct said that I should, but it will make this long comment even longer

    I was devastated by what the consultant had written about me: ‘she seems to think that she’s a music and film technologist (I was; didn’t know that I needed to bring my degree certificate and transcripts); she seems to think that she has trigeminal neuralgia and she does not (I did; I was diagnosed at the maxillofacial department in 1997); her spasms are connected with panic attacks (I wasn’t having panic attacks, I was suffering from full torso muscle spasms that were excruciatingly painful); she seems to think that she cannot travel very far (I cannot travel more than half an hour because my knees lock and I also get debilitating fatigue such that I cannot even sit up); she has a ‘complex history’ (as if to say that the traumatic event and aftermath was entirely to blame for my symptoms when I had already dealt with this via extensive therapy, yet I was still ill). She did concede that I had ‘Widespread Pain Syndrome’, so I’m only in pain in the way that she describes it, not the way that I’m experiencing it.

    This letter severely damaged my relationship with the G.P., but there was no excuse for him to shout at me and bully me. There is more to tell about the bullying of the Psychologist in this multi disciplinarian team, but suffice to say that I’m banned from accessing the Rheumatology department unless I agree to attend a long 2 day a week course; mornings in the gym and afternoons either seeing the psychologist or attending pain lectures. I told them that if I could manage that, I’d be back at work. I could barely attend the hour a week whilst they were assessing me. I told the psychologist about the thousands of peer reviewed papers that prove that CFS like illnesses were real, and that doing the exercise he wanted me to do was actually dangerous. He told me that HIS research superseded ALL other research, and that his course makes people with various illnesses ‘less disabled’. I told him his research must be skewed because if you were as ill as me, you couldn’t possibly take part. He wouldn’t listen and banned me from the clinic.

    True to his word, a few years ago both of my knee cartilages had locked or torn; I couldn’t walk. I went to see my G.P. for a referral, and 2 weeks later I received a letter, with a covering page entitled: ‘What to expect in your psychology appointment’. I was livid. I cancelled the appointment, told the G.P.s secretary just why that was, and arranged my own physio.

    My experiences were so bad over those years that I was asked to write a submission to NICE; I don’t know if it was included, but I guess it must have been.

    I’ve deteriorated further, and although I have a good G.P. now, she refuses to refer me to see about my continuing cartilage problems, she refuses to send me to an endocrinologist, but she will still refer me to a neurologist; that would mean getting on the psycho merry go round again: no thank you! I wonder how many people who are left in limbo land, never getting a formal diagnosis, end up dying of things like cancer because they’ve not been believed?

    I’m so ill now that I could care less any more. I keep saying: ‘that was the worst day of my life’, then there’s always another one worse! I try to keep positive but when you’ve spent most of the week on the loo due to bowel problems, in agony, soiling yourself, along with all of the other symptoms, you pretty much think that you can’t carry on like this any more. Of course I do. I have to be there for my family; rarely in person, but by telephone. Jollying them along as they’ve all been through so much.

    I’d just like to be believed sometimes. I don’t say I have M.E. now. I asked my neurologist last time what should be put on sick notes, and he said that I have no formal diagnosis, but it’s likely neurological in nature but there was no test for it as yet (I was adopted and have direct family with M.S., so it could be that). It’s not that we want a label, it would just be nice to be able to tell people ‘whatever is up with me’, as you’re made out to be a hypochondriac or delusional.

    Sorry for the long post.

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    1. Utting Wolff Post author

      Please don’t feel you need to apologise for the long post. Your story is important. It is terrible what you’ve been subjected to. Please do look after yourself as best as you can. There are so many of us and there is some excellent research going on now that could well be a game changer for you, me, all of us. It is an utter disgrace what has happened to you but your life is precious and no one, especially not incompetent, self-serving medics, can take that away from you. You matter, your story matters, we are grateful to you for having taken the time to tell it. Our very best wishes to you, Claudia & Geoff

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  5. Findlow

    Thank you so much for another excellent blog.
    I continue to be horrified at the way in which proponents of the view of ME as psychosomatic choose to remain willfully ignorant of the biomedical evidence. Suzanne O’Sullivan’s blocking on Twitter of any people who respectfully tried to enlighten her, with links to research, is an example.
    As for the likes of David Aaronovitch and Rod Liddle (not sure if he’s added his two-pennyworth to this recent Wellcome book prize hoo-hah yet, but he has history..) perhaps they are purely and simply rather nasty little bullies. Pretty pathetic to keep picking on people so much physically weaker than themselves.

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    1. Utting Wolff Post author

      Thank you. It was written by Geoff last year but is a timely reminder that nothing has changed for the better in the UK, on the contrary. Many nasty and/or completely ignorant comments on social media, so here’s hoping we’ll be spared DA and RL (probably not). Edward Shorter has reared his ugly head again, aided and applauded by James Coyne. Enough said.

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