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Why few dare tackle the psychology of ME

Discussion in 'General ME/CFS News' started by Firestormm, Sep 24, 2012.

  1. Firestormm

    Firestormm Content Team Lead

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

    http://www.telegraph.co.uk/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html

    By Max Pemberton
    7:30AM BST 24 Sep 2012

    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.
  2. Firestormm

    Firestormm Content Team Lead

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  3. Enid

    Enid Senior Member

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    We must admit to giving up this paper a long time ago owing to the uninformed articles by this psychiatrist promoting the usual Wessely garbage. Let's hope they do keep clear of the "psychology" of ME - nothing to do with psychology so nothing to do with them. He could of course educate himself and follow Lipkin and all the science findings. We have to in order to addresss all the pathologies found.
  4. user9876

    user9876 Senior Member

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    I think it is remarkably similar to Michaels Hanlons article in tone and content. I assume that Wessely has been doing some behind the scenes briefing of the press.
    jace, SOC, Shell and 2 others like this.
  5. Sean

    Sean Senior Member

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    No doubt he is in full propaganda mode at the moment.
  6. Tally

    Tally Senior Member

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    This makes me so angry. I wish I was eloquent enough to leave a comment there.

    How convinient for him to say 'role of viruses' when only one has been proven to not be there. He makes it sound like this proves there are no viruses at all. This is such a manipulative way to speak!
    Sure, we all know that a virus might not be a cause. But that's just it: MIGHT NOT. It's so unscientific to claim otherwise.

    And I find it ironic that researchers are complaining of being harassed. I agree it's unforgivable to be sending threats to them, but isn't it us who get PTSD from mistreatment by doctors and researchers, not the other way around?
    m1she11e, warriorseekspeace and Enid like this.
  7. Firestormm

    Firestormm Content Team Lead

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    I just hope that this time round nobody starts questioning the 'truth' behind his claims of harassment. It will do us no good whatsoever and such activity should not be condoned. Those doing it are beyond the pale whether done in 'jest' or otherwise.
    jspotila likes this.
  8. Enid

    Enid Senior Member

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    I agree to a certain extent (not violence etc) Firestormm but in the terrible history over decades in the UK from psychiatrics who will not "get it" can understand those driven to distraction by their hold over ME/CFS as "psychological", so knowledgeable criticism accepted.
  9. Tito

    Tito Senior Member

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    My concern is more: "Why few dare tackle the biology of ME?"
    how many researchers and doctors were bullied out of the field? How many had their career ended? Their funds stopped? Their reputation shattered?
    heapsreal, Adamskitutu and Enid like this.
  10. Vincent

    Vincent Senior Member

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    What makes me suspicious is the attacking of people just asking questions. This leads me to believe the 'establishment' or government(s) have something to hide. I can't speak for the UK government but I know the US government has giant biological weapons research labs all over the country. There is a great show called conspiracy theory with jesse ventura where they talk about plum island, and all of the secret germ testing that goes in that facility.

    In the US it's been proven that AMES strain anthrax was mailed to people shortly after 911. No one has ever discovered how this strain, made only in fort detrick MD, found it's way inside the mail system. Bayer also knowing shipping factor 8 blood clotting medicine to people around the world when they knew it was contaminated with HIV.

    Dr Len Horowitz and Dr Robert Strecker both say the government had a hand in creating HIV. You can watch the Strecker Memorandum online where he shows the documents where the US government asked for such a weapon to be created. Shortly after his brother committed suicide under dubious circumstances. You can also watch Horowitz's videos on youtube or read his book, Emerging Viruses.

    If attention is brought to some man made substance that brought about an entire new class of diseases, it might blow the whole lid off the secret germ testing that goes on in various governments. They would then have to admit this research goes on, and yeah we accidentally (or purposefully) released X microbe, etc.

    These facts may sound unbelievable but it's all true, and I urge you to research my claims for yourself.
    meandthecat, GracieJ and Katherine like this.
  11. Tally

    Tally Senior Member

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    We better not tackle conspiracy theories and rather stick to science (however flawed it might be at times). We don't want to give them more arguments in labeling us paranoid.

    There is plenty of evidence by reputable scientists that we have a physical disease. Any psychiatrist that chooses to ignore that completly can not call himself a professional.
    heapsreal and Enid like this.
  12. Vincent

    Vincent Senior Member

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    I'm talking about facts, shying away from them will get you nowhere. You need to call the government's bluff. Stonewalling means they have something to hide, period.
    Katherine likes this.
  13. biophile

    biophile Places I'd rather be.

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    It always annoys me how criticism or questioning is conflated or confused with harassment, and how the stigma of mental illness strawman/redherring card is played whenever there is criticism for claims about psychological factors in ME/CFS. Claims about harassment tend to be exaggerated and lacking of hard evidence too, basically they are anecdotes. Claims about ironic hypergraphia, or prolific writers too exhausted for anything else, usually do not take into consideration the volume of content per person vs what is at stake for them or the medical abuse/dismissal they have endured.

    Hardly anyone seems to believe anecdotes from patients who claim to have experienced harassment, abuse, dismissal and neglect from health care professionals or other people, so why should we automatically believe anecdotes from journalists and researchers claiming to have been harassed by patients? We have been subject to dubious claims and deceived before, so unsurprisingly, trust is a major issue and can result in a degree of paranoia.

    However, I have to ask, what if some of the claims of harassment are true? What if some writers really are being inundated with abusive emails and occasional death threats? What if there really are a few unstable individuals out there involved in such activities? Such behaviour would indeed be unacceptable, disgusting, and damaging. And denying the existence of such behaviour would be offensive to victims, just as it is offensive to deny the harsh reality of ME/CFS.

    I have suggested numerous times that there may be (relatively minor) mental factors in some cases of ME/CFS, due to it being characterized by post-exertional symptomatology which would be worsened by the existence of such factors that exist in a general population. I have never been subject to abuse or harassment as a result, so I suspect that the anger is not towards the mere suggestion of such factors, but rather, the over-emphasis on such factors based on flawed evidence.

    Personally, I have not been able to find patients who endorse such harassment, so if existing they must be rare or working in secret and I am not part of the cabal. However, it is a slippery slope to just blame everything on some mysterious cabal, because news coverage tends to lump in all vocal critics as part of the fringe element.
  14. Ian McLachlan

    Ian McLachlan

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    I hope people do question the truth of these claims and let’s see the extent of the evidence. We all have access to a crime prevention officer and are all able to gain a high alert rapid response just by dialling 999. You would think reading this rubbish that there was an ME equivalent of a Taliban training camp. It is a pathetic article.
    Adamskitutu, Enid and Tito like this.
  15. alex3619

    alex3619 Senior Member

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    Shades of Red Under The Bed and Guilt By Association! I do not condone violence nor threats of violence ... though I do think some events in ME history need official investigation - that isn't a threat, its a statement that there is a public interest in finding the truth. However if you can paint all critics with the same brush, then you are engaged in very negative spin. If someone is being harassed to have integrity they have to be specific about the complaints, or specific enough that it is clear what the nature of harassment is.

    I have not investigated the specifics involved here, but I gather there is insufficient information to really judge the situation. Asking someone to provide details to verify their claims is not harassment - threatening them to make them do so is. Furthermore in the case of both journalists and researchers they are justifiably questionable on matters relating to public interest or their research. So if one makes an unsubstantiated claim it is completely legitimate to question it, particularly if that claim appears outlandish. It is then up to them to either substantiate the claim or decline to do so.

    We are a community that has been systematically lied to for decades. We face hypotheses presented as facts, and "facts" which are contradicted by evidence. This means many of us, justifiably, have very little faith in unsubstantiated outlandish claims.

    We also appreciate careful science. The problem with a lot of the biopsychosocial research is that it typically does not gather or rationally use useful objective evidence, and many of us doubt it can even be called scientific. While there are some individuals who have extreme views on biomedical research, this is understandable. We have all been misinformed so many times its ridiculous. We also have different case histories, which sometimes bias our judgement, and this is also the case with most doctors.

    I am aware of one, perhaps two claims of violence use by ME or CFS patients. I am aware of a small number of claims of threats from more. This is a tiny minority of patients, though I cannot be sure how representative this is of the whole.

    What I do not doubt is that some of these figures receive extremely hostile emails or letters. That is entirely consistent with the patient community as I understand it. Such communications might be considered harassment, and it is clear that Max Pemberton views it that way. However, I still do not know how common this is. Most patients and advocates do not do this, nor do we condone it. Let me emphasize though that letters critical of a persons arguments or claims, especially if they have a public profile, is not by itself harassment.

    Bye, Alex
    WillowJ, justy and Tally like this.
  16. Enid

    Enid Senior Member

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    Citicisms of "persons" arguments or claims goes on all the time in the press, some very personal too. As a medical journalist (MP) should expect as strong views in response to his own claims. Now if he were an authority that is knew his subject matter - myalgic encephalomyelitis fully who knows we might even listen.
    Tally likes this.
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

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    What community ? There are contributors to this thread who are already being attacked by our 'fellow patients' on other forums, merely for holding views that are 'unacceptable'. The past five years have seen successive 'vocal, vexatious minorities', drive every dissenting reasoned voice away from any public discourse about M.E in what has become a progressive Talibanisation of the illness, where 'we' (the true believers, the belongers) is described by a witless anti psychiatric polemic.

    Hyperbolic claims of "been systematically lied to for decades", only reinforce the Masadaist internalisations of a myth of collective oppression that underwrites the increasingly cult like script that those who claim The [M.E/CFS] Community as their own, wish to see to played out. One can find exactly the language of "systematically lied to" on Alien Abductiontist websites, and it is exactly the kind of rhetoric that flows from such an internalised perspective which feeds the zealotry of those who feel free attack and harrass those who they identify as oppressors. No reasonable person wants to be part of community like that - if only for the most practical reason that all strategies for 'winning' that flow from it are doomed to fail, indeed they are lost from the outset because it is a fundamental error to accept the the enemy's description of the 'war'. Fight on the enemy's ground you lose, fight on the enemy's terms, you lose, allow th enemy to 'describe' you, you lose.

    Does, Pemberton's scribbling harm the interests of M.E/CFS patients ? Yes ! But the idiots who bombarded his email and twitter accounts only provided him with more ammunition, lesson = those idiots are fighting the wrong battle or the right battle in the wrong way. For some the motivation is probably emotional unburdening - unthinkingly getting their rocks off, for others, a degree of manipuation is probably involved, those who like to watch the crowd running in the wrong direction, or who want to play flag wavers or generals. But all we really need to know is - it's just dumb to fight like that and anyone who is serious about community building needs to start by making it plain that 'belonging' demands integrity and consideration - not fanaticism. I will not be holding my breath though, Pemberton and others will continue to excite the attention of the mob and they will continue to confirm for Pemberton and the bulk of his readers that opposition to psychiatric definition of M.E/CFS is evidence that M.E/CFS is by definition a psychiatric illness.

    IVI
    Holmsey, barbc56, Simon and 3 others like this.
  18. alex3619

    alex3619 Senior Member

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    Hi IVI

    "Systematically lied to" comes from specific, detailed numerous items, time after time, decade after decade, individual after individual ... and thats just my own history. When I compare notes I see it as systemic due to the widespread observation that this is happening to many of us.

    Did you know that a very large number of doctors told me I would be better in six months? They kept telling me that for several decades. How about decades of misdiagnoses? How about claims about treatment that were unfounded and dangerous? I could write a book on it just from my own case history. When I enquire about other case histories, I see the same pattern again and again.

    This is NOT a claim about conspiracies. Its totally different. This is a claim there is a severe misunderstanding and that many people, including professionals and authority figures, reply to any difficult situation with a dogmatic answers regardless of whether they know the answer or not, and frequenty its just a hope they got it right. Its the same issue that lets people believe in the hypothetical disease hysteria. "We don't know what is wrong, but maybe its hysteria, a hypothetical disease" is not what they say. Rather than acknowledging the unknown, saying "I don't know" these authority figures try to present the image that they know. Thats deception. Its a lie.

    Its one thing for a professional or government official to say "I don't know." Its another for them to say "clearly its X, Y or Z" when they do not have a clue. In the last couple of years I have caught several doctors speaking from ignorance, expounding things that are factually and provably false and I don't see doctors very often. This is not conspiracy. Its not suspicion. Its numerous instances of things I know about factually. Again, what they say is not posed as a question or hypothesis - its posed from a claimed position of truth. In other words, its a lie.

    Conflating systemic spin, falsehood and untruths with conspiracies just confuses the issue. It has nothing to do with oppression. Its an analysis of events. I do not like to try to analyze motivations behind the events as there is no way to be sure why its happening. Thats where conspiracy theories begin - might be rather than the facts. It is another thing entirely to analyze the facts and look at consequences, and another thing again to talk about how people perceive and describe those events.

    When a doctor says "I do not know' or " I am not qualified to deal with that" I respect those answers. When they say "its clearly this" when its contradicted by the facts, they lose my trust.

    As for cults, many articles and books have been written about Freud as a cult leader (I am reading one now) and the same pattern can be seen in modern psychobabble.

    I have seen, and agree, that there is some tendency toward group think in some patient groups. Its a problem. It is nothing like a cult however, at most its a nascent cult that can't quite organize, but I don't think it ever will, there are too many factors against it. What does happen though is that many who think alike get together on specific websites and expound their views. This is a consequence of the internet, and not specific to ME or CFS. It applies equally well to "sceptics" websites.

    If you were to argue, instead, that some individuals show excessive enthusiasm without critical analysis, I would agree.

    Bye, Alex
  19. user9876

    user9876 Senior Member

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    Are there? I've not looked at other forums.

    I think one of the nice things about phoenix rising is that there is a good level of scientific discussion. I find the thought that people would go through posts and object to them on a different forum really strange. But then the world is strange.

    I do think its useful to add comments that describe the science that people like Max are clearly unaware of. Maybe they might read it and ask the people who are briefing them.
    Valentijn likes this.
  20. Enid

    Enid Senior Member

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    Pemberton's "scribblings" I note have attracted over 132 responses at this point in time - of the kind one would expect to see, and in the good old press tradition just counter-claims put as strongly as his own views but with science and experience.
    Tally and Ian McLachlan like this.

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