‘Protestors have got it all wrong on ME’, Daily Telegraph, 29 August 2011

From the Daily Telegraph, 29 August 2011 (comment by Max Pemberton).

That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It might seem strange that a group of doctors would be subjected to harassment, bullying and death threats for attempting to help people. Even more baffling if the death threats should come from the very people they were trying to help.

Yet earlier this month, Prof Simon Wessely, a doctor and pioneering researcher into ME (myalgic encephalomyelitis), disclosed that he and other scientists working on the condition had received death threats from a small group of protesters who have ME. In addition, the protesters have made complaints to the General Medical Council, universities and ethics committees – all of which have been proved to be baseless – in an attempt to disrupt further work.

The reason for their behaviour is that research is focusing on the psychological basis of the condition; as a result of the findings, ME is now considered to have a significant psychiatric component. While the protesters represent only a tiny fraction of those with ME, it is true to say that many others feel strongly about the suggestion that it has any basis in psychology at all.

Symptoms of ME include extreme fatigue and muscle pain. Sufferers are sometimes bed-bound or have to use wheelchairs. Many claim that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers, who feel frustrated and angry that doctors remain sceptical that this is the actual cause.

The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. Yet research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.

In addition, years of research have already been undertaken, which has produced underwhelming, inconclusive results to support a biomedical cause. It wasn’t until psychiatrists such as Prof Wessely started treating the condition psychologically that real progress was made.

The current gold standard for treatment, as supported by the National Institute for Healh and Clinical Excellence (Nice), is a combination of supervised exercise and talking therapies. A major British trial published in The Lancet found that at least one in three patients with ME improved or recovered using this approach. The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist.

Most people are more than happy to be seen by any specialist – more than one if required. If you have a painful knee, for example, you might be seen by a rheumatologist and an orthopaedic surgeon. The involvement of representatives of both these specialities would never be regarded as evidence that you were not believed, or that your welfare was being undermined.

Microbiologists and immunologists have been unable to help ME patients, and so psychiatrists have become involved. But that is considered outrageous. People refuse to go to outpatient appointments and refuse treatment, despite evidence that it works. Accusations are thrown around that the medical profession is not taking them seriously. But, just because doctors frame a condition in terms the sufferer does not like, does not mean doctors are not taking it seriously. That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It’s an attitude that dogs the lives of many people living with mental health problems. Yet, for me, a psychological explanation is a very real one. It doesn’t mean someone is faking it; it doesn’t mean the illness doesn’t exist. It also doesn’t mean that people should be able simply to pull their socks up and get better, or that it’s under conscious control. However, it is testament to the complexity of the brain that the mind is capable of such stark physical symptoms. As a model for understanding a condition, it’s as valid as any other.

28 thoughts on “‘Protestors have got it all wrong on ME’, Daily Telegraph, 29 August 2011”

  1. Dr Charles Shepherd

    Yes – this one is awful.

    It is quite prominently displayed (quarter of a page) in the paper edition on page 23.

    We will be preparing an urgent ‘intended for publication’ MEA response to the Editor of the DT.

    I will also be contacting more senior people at the DT about the way in which this article has mispresented the situation regarding biomedical research and the way in which the MEA has campaigned for biomedical research funded by the MRC – action which resulted in the setting up of the MRC expert group and the production of a list of biomedical research priorities.

  2. Tony, this isn’t the version on the Telegraph website today. There has been at least one significant change since Friday.

  3. Thanks Tony and Charles.

    The one I want to reply to is the hard copy version – that’s what letters should be replying to I think. I’m particularly interested to know whether it says one third recovered or one third improved or recovered. So if you can please use the hard copy version for this bit at least. Thanks.

      1. Hi Tony,

        Thanks for updating it based on what is on the Telegraph website today.

        Sorry I wasn’t clear. I don’t have access to it. I was just trying to make the point that we don’t know at what point the change was made to the Pemberton article. There is a chance that the change was made after it was put in the print edition.

        Probably the website version is correct but if anybody can check, it would be good. Thanks for the good service putting up all the articles recently.

  4. Letters go to: dtletters@telegraph.co.uk “Please include name, address, and work and home telephone numbers.”

    On Friday, there were 19 letters ranging from 23-182 words; median length: 66 words. So people should try to keep their letters short. Basically if you go over 200 words, they either won’t publish it or they may edit it (it seems).

  5. I don’t think Pemberton made many changes but the ones he did make are interesting to note nonetheless.

    Bon chance mes amis 🙂

    1. Dr Charles Shepherd

      MEA has now sent in an ‘Intended for Publication’ letter to the editor of the DT.

      And I wonder why the MEA is no longer being accused of being disengenuous in our call for government funded biomedical research in the paper version today?

  6. Dont forget to mention the blood ban and the real reasons for imposing it which have been admitted by other countries, but not Britain.

    The blood ban frames the disease in a way psychiatrists do not like.

    The MEA should make more of this.

    I am astounded by how rapidly this fact – the fear of a blood borne, transmissible agent, and the imposition of a ban in all the anglophone countries, has been allowed to disappear from the debate.
    The recent discussions in the papers have not moved on one iota from the old paradigm.

    Things have changed. Remind them of this. Support the WPI.

  7. Dr Charles Shepherd

    Remember it was largely as a result of the MEA correspondence with the CMO that the extension to the blood ban was introduced. And when it came in we managed to bag an 8am slot on the BBC ‘Today’ programme to talk about the ban. I then spent most of the day doing BBC local radio progs on the ban. I haven’t brought this into our etter to The Telegraph because there are a limited number of points that you can make. But I agree that it is an important point if this story goes on any longer. Am now off to London for a meeting on fluctuating medical conditions and DWP benefit (ie ESA WCA) reform.

  8. Just to clarify, I’ve only been blocked by Max P on Twitter, not by Twitter network! I don’t think the Wessely school has that sort of power, well, not yet. Also, a small consolation: pleased that ‘the threats’ soap hasn’t made it to Scottish broadsheets, not yet anyway..

  9. Wow. Is it me, or is this one the worst one so far. Simon Wesseley saying Afghanistan is safer is one thing but a Doctor in a major newspaper saying ‘as a result of the findings, ME is now considered to have a significant psychiatric component’ is really worrying.

    I don’t understand why the simple facts aren’t even getting out there. Ok, so ME sufferer’s opinions might not be much sought after but I don’t know how anyone can write some of this stuff. Just worsened by the fact he’s a doctor.

    This last month or so has been so horrible to witness. It’s so hard not to be deflated. And the voice of simple facts and counter argument has been so small.

    I always think of those with families and friends who don’t understand or don’t sympathise and the further damage them reading articles like this must do.

  10. I sent the following to The Telegraph:

    At last, The Telegraph has joined the media stampede to join the Wessely Choir in generally condemning ME patients. There is not a skerrick of knowledge or independent research on the topic done by any of them.

    Max, if you had bothered to look, you would have found that ME patients are worried not about any stigma of mental illness but about the gross misdiagnosis, missed diagnosis, neglect and mistreatment which has been inflicted on them due to Wessely et al who refuse to acknowledge the many serious biomedical impairments in these patients. There is evidence of this.

    Please do not pretend that making complaints to the GMC and ethical committees is on a par with attacks and are a terrible thing. Just because the complaints have been ignored does not mean they are baseless. If you have any knowledge about science at all you will recognise that, if you only look.

    Your article implies that if ME patients only accepted their labelling as psychiatric and followed the treatment for such a condition all would be well. It wouldn’t. Many, including myself, have tried the treatment being forced on them and they already know it makes them worse. That’s why they don’t do it.

    A few, who must be in better health unfortunately might boil over at the unjustified provocation on them, but most are so sick they couldn’t even contemplate making any threats. You wouldn’t want to be in their shoes. And you can be just one infection away from being made disabled for life. Just ask some of the patients!

  11. @may ‘I always think of those with families and friends who don’t understand or don’t sympathise and the further damage them reading articles like this must do.’

    Exactly, May. That is my concern. As I said in my CIF article without strong family support – or friends – this illness could undo you. We all work so hard to educate our families and friends, and this kind of barefaced knocking down of our reality in the broadsheets this last month is disgusting and immoral.

    How dare they.

    @susanna, I love your letter – ‘not a skerrick of knowledge’ – but I fear they edit responses so brutally, you will be lucky to get half a paragraph in. Or even a sentence!

    Looks like my Spectator letter will not be used so I will post here now. I tried to keep it short, but, alas, not a peep from Spectator, but of course I am a Twitter insurgent and cannot be allowed to have a voice.

    ***

    Dear Editor

    I was concerned to read Professor Simon Wessely describe the irritation felt by neurologists towards ME patients in the ward he was working on in 1987 (‘Mind the Gap’, 27/8/11)’. He suggests that these patients were presenting themselves to consultants with a pre-determined idea of what was wrong with them, desperate for validation. I have the opposite experience: I had never heard of ME and when I was diagnosed with virally-triggered ME by a consultant neurologist in early 1984 I had to write ‘myalgic encephalomyelitis’ down so that I would remember. He told me I was ‘gravely ill with a houseful of abnormalities’. There was no irritation that I recall. I had a plasma exchange with immunosuppression therapy.

    Other people in the west of Scotland were similarly ill. The outbreak is described in medical literature.

    Almost 27 years later, I remain ill.

    ****

    I think the title of this piece should be renamed Mind the Cr*p instead of Mind The Gap. Didn’t say that in letter. 😉

    1. nmj,

      I relate to the manner of your diagnosis (as well as the other things you say. thanks for your comment).

      I was sick for years, taking weeks of sick leave from work. I had not even heard of ‘chronic fatigue’ let alone ME. The doctors’ and my own ignorance did not stop me from getting worse and I’m housebound now. We don’t try to talk doctors into any kind of diagnosis. We just want them to find out what is wrong with us.

      The psychatirists have re-invented a history for us, according to their own favoured beliefs and impose that and sell it to the world which believes them. They then set about treating the fiction they’ve created.

  12. Pressure is being applied to the MEA and AfME to weaken their confidence in the XMRV retroviral discovery and destroy their interest in the advancing science of this field.

    The British government and other powerful vested interests do not want to pay for the health costs incurred by this disease.
    The psychiatric lobby provides the cheapest option and so is encouraged and promoted for that reason.

    We can now see what the results of this will be for the patients.

    There is no doubt about the retroviral findings in ME.

    Frank Ruscetti and Judy Mikovits are accomplished retrovirologists and know what a retrovirus in patients blood looks like.
    This is the third time in the last twenty years that a retrovirus has been linked to ME and each time the research has been prematurely curtailed.

    The mere fact that the British government will not admit that it imposed a blood ban last November because the Alter and Lo paper confirmed that XMRV was present in patients’ blood shows that they wish to prevent recognition of ME as a physical disorder.

    Everyone who cares about the welfare of people with ME must understand that here science is being perverted for financial advantage.
    There are a million sufferers in the US alone. This is a costly illness as it has spread in the last generation and affects young people of working age.

    We have had no treatment for thirty years yet this is not enough. They still want to avoid the cost of this disease.
    They will never be willing to accept the truth on ME.

  13. Dr Charles Shepherd

    Currer – there is no truth whatsoever in your statement above that pressure (government, MRC, professional etc) has been applied to the MEA in relation to our position on XMRV research, or any other form of biomedical research.

    My own feeling, as I have now made clear on MEA Facebook on several occasions, is that I am now very sceptical about a link between XMRV and ME/CFS. I have also become increasingly sceptical as to whether XMRV is a disease causing infection in relation to ME/CFS. But it is still too early (certainly before the Lipkin study results appear) to send out the scientific jury to make a decision on XMRV and ME/CFS.

    I would also point out that behavioural and psychiatric treatments are quite expensive in relation to ME/CFs – a course of CBT costs over £1,000. So there is a real incentive for government to find a really effective form of treatment for people with ME/CFS that would get people off benefits and back to work, and paying taxes once again.

  14. The high costs of this disease are the welfare payments, rather than the medical bills and this is what I was referring to.

    People with ME have immense difficulty getting higher level disability benefit because of a lack of medical support for their claims. ME/CFS clinics set up on a psychiatric model do not provide adequate letters for a successful claim for DLA for example. This makes for quite a saving to the Treasury.

    Remember, a disease can be recognised, but still unable to be cured and impose a hefty cost to the state
    Think of multiple sclerosis or parkinsons disease.
    Why rush to recognise an ilness when it will lead to extra costs?

    There is no reason for the state to suppose that just because ME is recognised it will automatically become cureable and sufferers will be able to be sent back to work.

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