‘Why few dare tackle the psychology of ME’ | Daily Telegraph | 24 September 2012

September 24, 2012


From the Daily Telegraph, 24 September 2012 (words by Max Pemberton).

The findings of a study into the role of viruses in ME will not be acceptable to some sufferers

Sometimes the most important scientific findings are not those that prove something, but those that disprove something. This was the case with a study published last week (and reported in the Telegraph) on the role of viruses in ME, the condition characterised by extreme fatigue and muscle pain.

Scientists based at Columbia University in New York found no evidence that sufferers were infected with the viruses XMRV or pMLV, which had previously been isolated in tissue samples taken from ME suffers and were thought to have a role in the condition.

Researchers found compelling evidence that detection of the viruses was as a result of contamination, thus corroborating two previous studies that had reached the same conclusion. The theory that XMRV or pMLV were factors in ME was dismissed ”once and for all’’, according to the study.

This will no doubt come as a blow to those ME sufferers determined to prove that their ill health is a result of a biological agent. But despite this being such an important study, it wasn’t widely reported by British media. I suspect I know why.

Last summer I wrote a column here about ME, after researchers had revealed the systematic abuse they had received from a group of ME protesters, who objected to the scientists’ suggestion that there might be a psychological component to the condition. The scientists, including highly respected clinicians, told how they had been subject to intimidation and even death threats. I suggested that perhaps the reason the protesters felt so strongly was because of the way society views mental illness, and the implication that it is not a real form of illness. I thought this was quite a reasonable observation. Nothing could have prepared me for what happened next.

Within an hour of the article going online, I began to receive messages on Twitter. Within a few hours, I’d received several hundred. Within a few days, it was into the thousands. I was inundated with emails and letters, furious that I had backed the scientists who’d argued that a psychological component might play a role in ME. Those who targeted me displayed an astounding degree of paranoia and obsession, twisting anything I said, or any attempts to pacify them. I soon gave up bothering. For a group of people with such apparent low levels of energy, they seemed to have an incredible amount to waste on me. Some wrote to my agent and my publisher. The article was even referred to the Press Complaints Commission (which rejected all the complaints and vindicated the article). Others found contact details for the person who runs my website, for my partner and for several of my friends. They targeted journalists who voiced support for me.

Some personal threats were made and I had to get lawyers involved. I had received emails from people with ME thanking me for my piece, but they explained they dare not speak out for fear of retribution. What on earth was going on?
Then, the puzzlement changed to concern. It was brought to my attention that people had been discussing, via the internet, where I lived. My home is easily identifiable. Photographs of it had been posted online. The police became involved, and visited my flat to assess how secure it was. My telephone number and address were placed on a ”high-alert’’ rapid response list.

It is clear that the people who targeted me in such a reprehensible way represent a very small minority of ME sufferers. As I analysed the messages on Twitter, it became apparent that there were, perhaps, 200 individuals repeatedly sending me those vile messages and emails. A proportion of them didn’t even live in the UK.

Eventually, the frenzy began to die down. It coincided with appeals from some in the ME community not to harass me as they believed such extreme behaviour undermined their argument.

Since then, medical journalists have told me that few of them would choose to tackle a story about ME because of the abuse it attracts. Media doctors I consulted agreed it was the one subject that they avoided at all costs. This chimes with the researchers’ original point: that the minority of militant sufferers are doing the majority a tremendous disservice by scaring off doctors and scientists from working in the area.

The daft thing is that I actually have a deep sympathy for sufferers of ME. I’m very interested in the subject and have followed the medical literature on it for years. I think the difficulties such patients face in accessing services and state assistance is scandalous. I’d happily champion their cause, but after my experience I really don’t want to get involved. I have put my head above the parapet once more because I think it’s important that readers know what happens to those who try to discuss ME, and why the press are often reluctant to cover stories about it.

The other thing is that the experience confirmed my original theory about the fears and prejudice surrounding mental illness. Those who denounced my column told me (often in capital letters) that they weren’t making up their symptoms, that they were physical, so how could it be psychological? And therein lies the rub: that mental illness is seen as being ”made up’’ or somehow inferior to physical illness.

These ME sufferers pointed out that brain scans have shown possible neurological changes as evidence that their illness wasn’t psychological, completely failing to understand that such scans show significant changes in every psychiatric disease, too. This is the root of the problem – that we, as a society, still labour under the Cartesian legacy of the mind-body split, and that only physical illness is real. Meanwhile, because of a vocal, vexatious minority, the suffering of those with ME will continue to go largely unreported.

7 thoughts on “‘Why few dare tackle the psychology of ME’ | Daily Telegraph | 24 September 2012”

  1. The following mistakes are in Pemberton’s article.

    The Lipkin study found both serology and PCR positives.
    They tested blood not tissue, even though tissue is where MLVs infect. Only once before has an MLV been detected in the blood of a mouse and to do that they inoculated it and then drained all its blood.
    XMRV is not the Mikovits and Ruscetti retroviruses. That strain has nothing to do with those sequences or the positives in the Lipkin study.
    Lo and Alter did not use their assays from before.
    The cohort contained fatigued people. The Canadian criteria was not used, the main feature of ME was not required. Depression, anxiety and people with EBV activity were all allowed into the study.

  2. Max Pemberton’s second foray into the politics of ME is quite surprising if the reaction caused by his 1st article is accurate. I find it deeply distressing that a tiny minority attract so much publicity. I do not in anyway condone the misguided actions of this tiny minority and hope that Dr Pemberton took the appropriate action of contacting the police and having those involved charged and therefore placing in the public domain the perpetrators of these actions.

    On twitter, he refers to “putting his head above the parapet” with many commenting on the flak he can expect, but a quick glance at his twitter @mentions shows many patients asking him to read blogs/links which give some insight into how this illness actually affects the majority in the global patient community.

    He writes “The daft thing is that I actually have a deep sympathy for sufferers of ME. I’m very interested in the subject and have followed the medical literature on it for years.” If this were truly the case then it is indeed disappointing that this is not reflected properly in either of his articles on ME, nor would he write from the rather naive “I don’t understand why……” perspective if he has followed the history/politics/research into ME in any depth. He would be blessed with some insight into how inappropriate it is to tar the entire global ME patient population of 14-17million people with the actions of the few.

    Perhaps if he were to talk to some ME patients and find out what this illness is really about, he could write something that demonstrates his sympathy, and be bowled over by the enormous amount of bonhomie that exists within the ME patient population.

  3. Lipkin whos results about XMRV is saying patients with ME find it hard to be aggresive the total opposite of Max pemberton

    http://cii.columbia.edu/blog.htm?LOfRcb

    CII Press Conference: Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
    Posted 9/13/2012 10:55:59 AM

    CII Press Conference CII Press Conference

    September 18th, 2012

    10:30 AM (EDT)

    “Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”

    Lipkin is saying that ME patients find it hard toAt the XMRV results Press Conference last Tuesday, Ian Lipkin made a strong appeal for people to put pressure on politicians in order to secure more funding for CFS.

    Question from the floor: What do you think are the optimum things that can be done to speed the progress towards a cure?

    Ian Lipkin:

    I’ve been involved with a number of organisations that have been successful in promoting research. The most successful, of course, was the HIV AIDS community and thereafter the autism community….
    There is no question but that your political leadership will respond to pressure. So this may not be very popular things to say with everyone. At the NIH we like to focus on specific science and applied science without talking about specific diseases, but the fact remains that if you say there is a priority then people will work in that area.

    So I would encourage you to try to motivate your colleagues, people with this disease or related diseases and their families and loved ones to request additional support in these areas. This is what happened with autism and it made a huge difference in the level of investment at the NIH and even in the Dept of Defence. Again this is very difficult for people who have a chronic illness that is debilitating. It’s very difficult to be aggressive in pursuing that sort of support, but it’s really what you can do.

    http://forums.phoenixrising.me/index.php?threads/ian-lipkin-make-a-big-noise-for-more-cfs-funding.19534/

  4. http://poultonblog.dailymail.co.uk/

    19 September 2012 9:03 PM
    ME is no more ‘in the mind’ than Multiple Sclerosis. When is the world going to get that?

    Ever since I first wrote on the subject of Myalgic Encephalomyelitis – or to afford it a more user-friendly title, ME – earlier this year for MailOnline, http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html I have been overwhelmed by the response from patients and their loved ones.

  5. One should remember that “mental” illness is discrimminated against officially, throughout the UK and Northern Ireland by the DWP and their partners UNUM, who pay sufferers of mental illness less money than those with a “physical” aliment.

    If this discrimmination did not occur in the first place, there would be no need by the psychiatric lobby and their stranglehold empire, funded by the Insurance agencies (such as UNUM) to insist that ME belongs in their remit.

    ME sufferers are not discrimminating against mental health sufferers, we would not care about the label if it was correct and appropriate.
    I am sick of having this dirty accusation levelled at us!

    Research has shown that there are a great number of doctors who self prescribe medication for mental health problems. They won’t do it through official channels because of the discrimmination.

    http://reference.medscape.com/medline/abstract/18426258

    fron the conclusions:-
    “The risk of being stigmatized may cause depressed physicians to alter their approach to seeking mental health care, including seeking care outside their medical community and self-prescribing antidepressants. ”

    We are sick of being fobbed off with philosophical clap-trap about how;
    “They are not taking a dualist stance, because depression is physical and biochemical.” (which it is)

    – but still somehow manage to officially turn ME into a dualistic “mental” illness, fixed by a bit of positive thinking and a bit of exercise.

    I’m also sick of folk rabbitting on about unsubstantiated and exaggerated “ME terrorists and death threats”.

    I’ve been part of the international ME community for nearly 10 years, on various international forums – I have never encoutered an ME terrorist, or anybody else who claims to know one.

    And just because XMRV has been disproven does not mean there is no virus or retrovirus.

    It only means it is not XMRV.

    This “article” is just another nasty and vicious attempt by the psychiatric lobby to fling mud at us and make us look like hysterical madmen.

  6. ME sufferers have in fact received ‘systematic abuse’ from certain elements of the medical profession for years. Max is disingenuous to ignore this, disingenuous also being the word he used to describe the ME Assoc last year, in his first rather offensive article, which he later edited, if I recall correctly.

  7. This appeared in the letters column of the DT on 27 September:

    ME and mental health

    SIR – Max Pemberton asks “Why few dare tackle the psychology of ME” (Health, September 24). The reason ME sufferers object to being called mentally ill is that they are treated dismissively, and this dismissive behaviour is blamed for holding up research into a treatment for the disease.

    Some mental illnesses are serious and neurologically based, such as bipolar disorder and schizophrenia. ME patients are not treated as if they have this kind oif illness, but as if their condition was a trivial psychological disorder and they are wasting everyone’s valuable time.

    The recent study Mr Pemberton is referring to does not disprove all viral links to ME; it was only ever about one specific type of virus, the murine leukaemia virus, the discovery of which raised a lot of (false) hope in 2009, but has been abandoned.

    Matthew J Smith
    New Malden, Surrey.

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