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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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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. alex3619

    alex3619 Senior Member

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    Maybe, but the history of psychobabble is a history of failure and rearguard actions. They can delay progress by advancing their agenda, they don't stop it. Really good science like that of Barry Marshall and peptic ulcers causes them to lose ground, every time. Science is a solution to this problem.

    As I see it there is a a need for pushing the accelerator on science, and taking the foot off the brake by opposing psychobabble. We need both strategies.The UK MRC action (psychiatrist driven) to deny Rituximab trial funding should be a major talk of advocacy at the moment. We should push this hard.

    Bye, Alex
    WillowJ and currer like this.
  2. currer

    currer Senior Member

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    Do you have a link to this decision, Alex? I mean the worrying statement about the blocking of a Rituximab trial. Is there a thread for this?
  3. Bob

    Bob

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    Here's Pemberton's Twitter stream for anyone who's interested in seeing his responses to Tweets about his article:
    https://twitter.com/MaxPemberton

    For those who are unfamiliar with Twitter, if you click on 'view conversation', or 'expand', at the bottom of each Tweet, you can view the tweets that he is responding to.

    Edit: eeek! It's not for the faint-hearted! Don't read it if you haven't got the emotional energy to deal with it. He's talking about personality traits, neuroticism, paranoid, schizoid, avoidant and OCD traits, in relation to ME/CFS!!! I've never seen anything like it!
  4. alex3619

    alex3619 Senior Member

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    HI currer, I read it in several places, but have not seen an official comment. I am checking for sources and will post soon. Bye, Alex

    This should be treated as unsubstantiated rumour, but so recent it might be true and just not public yet. I just found the reference.

    http://hanlonblog.dailymail.co.uk/2012/09/me-no-one-is-saying-this-is-not-a-real-illness.html

    "Posted by an ME sufferer:
    Just saw my ME/CFS specialist today who is involved in trying to do a UK research trial of rituximab but has been unable to get funding from the MRC because of all the psychiatrists on the panel shouting it down. I thought they were supposed to be prioritising biomedical research? Says they are having to hope for NIH (US) funding now....
    He said there were too many psychiatrists on the panel. He indicated that the non-psychiatrists on the panel were sympathetic and interested in the research but the psychiatrists were negative and not interested and there just wasn't going to be any funding for it here as long as psychiatrists were controlling the panel. Likely was expressing frustration. I was surprised as I thought there would almost certainly be funding available for this.
    Posted by: Wanda Lozinska | 20 September 2012 at 11:50 PM"

    I have read it somewhere else too, but the risk is its a rumour that is circulating. However I will try to substantiate it further.
  5. Enid

    Enid Senior Member

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    Bob at 103 - didn't read Pemberton - not so much fainthearted but a bit selective about not reading drivel.
    Having just received the most charming thank you from Dr Lipkin (a real scientist) for our group thank you card the contrast couldn't be wider - Dr Lipkin researches and works with ME sufferers and Pemberton et al continue to see criticism of the psychiatric view as harassment - headlines such as "ME sufferers are wrong", air their grievancies in public, and infer a few (don't know who) who may have overreacted includes the whole - millions with the illness myalgic encephalomyelitis.
    Tally likes this.
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    Personality traits for psychobabblers:
    • smug
    • egocentrics who have, according to them, tons of admirers and "fans", but yet...have no friends...odd that, issn't it?
    • didn't have the balls to be a "trainspotter", "Trekker" or other type of genuine geek, but instead skittered sideways into "nasty, bitchy jerkass", sort of like, oh an art critic but with less skill and more cowardice.
    • induge in ritualistic self abuse involving stuffed animals
    • they like driving over old women and animals in GTA-type games
    • the kind of person who, when younger, would spit on a cake/sweet or such to make sure no one else got it.
    • ridicules everyone else for their eccentricities while they themselves proudly acclaim that they have none...yet have a secret stash of Julio Inglesias records and "sticky" pictures.
    • Gets aroused by pictures of Maggie Thatcher.

    :alien:
    currer likes this.
  7. Firestormm

    Firestormm Senior Member

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    Biophile et al.

    My initial comment was an expression of concern that people did not engage in challenging the authors contention that he had been 'harassed' (my term).

    I believe I said - you can check - I hope people don't challenge his contention. There is more to be gained surely from challenging other aspects (if you must) of the content of his article.

    It is pointless challenging such statements pertaining to 'harassment' and wholly wrong in my opinion to even suggest that you are condoning such activity by doing so. What do people hope to achieve in doing so? You really expect him (and others) to post 'evidence'?

    There was an 'incident' reported this morning on the news. How a referee had been 'harassed' on twitter and how he had referred the examples to the police. The legislation going through the system was again cited. Would you be asking him for 'proof'? What would be the point? Would it not reflect poorly on you/the 'community'?

    Pemberton wrote an article. Challenge the content that is incorrect e.g. he referred to 'tissue' being a part of the Lipkin trial. It wasn't. It was blood. Smacks of him not being bothered to even read about the trial.

    In what way is it 'advocacy' or even doing the 'community' any favours to challenge what he (and others) have said in relation to 'harassment'? Did you do it? Did you make any 'death threats' previously? No. So why challenge it?

    In my opinion to do so serves no purpose whatsoever other than to underline the impression that some idiots have of the 'community' whatever the hell that term means to anyone.

    I do wonder why articles like this that mention ME and psychology get some people so hot under the collar. What is the difference between 'neurology', 'psychology' and 'psychiatry' in reference to medical conditions and not to mention 'mental health'?

    It's all down to someone somewhere categorising something, somehow. There are things in the 'mental health' category that remain there despite evidence that they are not behavioural disorders (if that's a distinction).

    Surely the whole issue should be that regardless of what category you place 'us' under we are not receiving effective treatments or even being offered what is available equally.

    N.B. I haven't read all your posts since the one headed 'firestormm' from biophile. I am too rough this evening. Will try and pick it all up again tomorrow.

    Oh. For those of you who are interested check out Ben Goldacre's new book. Might appeal: http://www.amazon.co.uk/Bad-Pharma-...=sr_1_1?s=books&ie=UTF8&qid=1348601495&sr=1-1

    Nothing to do with this thread of course...
  8. jspotila

    jspotila Senior Member

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    FWIW, I've posted a breakdown of the mental illness meme on my blog. In short, I think we would have better luck challenging the logic (or extraordinary lack thereof) of the meme, rather than arguing about whether harassment has actually occurred or trying to stack up the physiological evidence.
    Enid likes this.
  9. Min

    Min Senior Member

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    Psychiatrist Ben Goldacre is or was, I believe, a colleague of Simon Wessley. He owns the Bad Science forum where M.E. sufferers are regularly denigrated. He writes for the Guardian newspaper who, I believe, are affiliated to UNUM and who have run a number of articles such as the Dr Crippen ones that mocked M.E. sufferers.
  10. Firestormm

    Firestormm Senior Member

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    Not sure that is relevant to his new book Jennie.
  11. Holmsey

    Holmsey Senior Member

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    Sadly I think it's going to be a case of he who laughs last laughs longest. There is now a common theme in all of these articles though, it's the one where they suggest the physical and mental need to be considered together, that I think will be their get out clause. For now though, as was suggested earlier, until they start spouting their views at AIDS or Cancer victims I don't see why anyone else should put up with it. For what it's worth here's my posting against the article.

    Surely there’s a patent dishonesty in this piece, while parading as a fair critique around the politics of the ME/CFS debate it is in fact a very cleverly worded promotion of a single view.

    The dishonesty begins in the very first paragraph where the author makes a general statement around the scientific value of elimination but then suggests that this has somehow been applied to all viruses as having any role in the pathology of ME/CFS, a complete untruth of which the author I have absolutely no doubt is aware.

    To clarify, the work to which the author refers simply gives closure on an earlier claim that two very specific and little known retro-virus lines were found in a large number of ME/CFS patients. Anyone with an interest in this illness already knew that there was a flaw in those studies.

    The author goes on to state that this study will “come as a blow to those ME sufferers determined to prove that their ill health is a result of a biological agent”. Surely the author means, those sufferers who “believe that their ill health is as a result of a biological agent”, or is it his intention to suggest they are doing their own research while the scientific community sits by quietly bemused.

    Following what is clearly a venting of the authors spleen which I will address shortly, he goes on to make a case around neurological change and again suggests that this also happens with psychiatric conditions as if that somehow shows how silly these ‘ME sufferers’ are being. Again the author makes the case for a single psychiatric viewpoint when in actual fact he may just as easily state, all psychological conditions may have a physical cause as we can also show brain change in physical illnesses. The truth of brain change is that it undoubtedly occurs in ALL illness, something I suspect is very well know to the author, and yet from all of the areas of research he could have chosen this is the one he uses in his argument. Interesting since he claims to be so well read on the subject.

    For the rest of the piece, I suspect this announcement has proved little more than a pretext for the author to once more use his very powerful and privileged position to give a little pay back to those who have reacted to his earlier article.

    While it is deplorable that anyone should be physically threatened or harassed in the manner described, the author should at least take the time to ensure he understands his own role in this and not just feign honesty while being wholly dishonest around his motives.

    There are over 4,500 individual papers which outline the physical abnormalities associated with what is termed ME/CFS, despite this they are mainly dismissed without mention by commentators such as the author of this article because no cure has yet been found. Surely the author is not suggesting that absence of evidence is evidence of absence or that medical science has its best days yet to come.

    The author implies anyone working in this field is liable to attack; this is simply not true, such attack is almost entirely reserved for those supporting the psycho-social model of the illness, why might this be.

    In the first instance I’m sure almost every patient will take the time to consider the possibility of a psychiatric cause, after all that’s a natural thing to do when your GP tells you all the tests are coming back negative. Many will even try those treatments offered, so desperate will they be to get well.

    But when this self analysis or psycho analysis fails to provide any evidence of illness, and those interventions fail as they do for 7 out of 8 patients according to the £5 million PACE trial, they will, as we all do, fall back on their own life experience.

    This is where our author’s own culpability comes to bear, in order to hold the views he clearly holds, he denies each and every one of those patients their right to know their own body, he denies them all of the learning they’ve done in life, from what pain and fatigue feels like, to what de-conditioning is. He goes on to deny the objective science, as psychiatry in the field of ME/CFS suggests it should be ignored even where it can be proved. He asks that they instead accept his subjective viewpoint which will not and cannot every be proved, as proof is the sole preserve of objectivity.

    The author should perhaps further reflect on the fact that his influence is far reaching while patients are in the main are left to berate him on Facebook or Twitter, and while they have no effect on the rewards he reaps from his ramblings, they suffer year on year through the insistence of the arrogant that there is no need to look as there's nothing there to find. Perhaps a piece on how often that has been claimed by psychiatry in the past only to be overturned by the inevitable science which follows would offer him a route back to both scientific objectivity and some personal humility.
    GaryK, biophile, Enid and 1 other person like this.
  12. user9876

    user9876 Senior Member

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    At first I liked Ben Goldacres column although it mostly contained obvious points. Its just got a bit dull same old stuff.

    I worry about the view he pushed that science and everything else should be about randomised controlled trials. Partly because you can't control for everything and its hard to do a trial looking for long term effects. But mainly because to me science is about developing the theory that you can test with experiments not just saying which is better lets do a test.
  13. user9876

    user9876 Senior Member

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    I think you are right. Pemberton seems like a particularly unpleasent character with a huge degree of certainty about his views. He has turned a PCC statement that said its opinion in a contensious area with evidence on both sides to the PCC saying his article was acurate. What I find particularly worrying is the doctors on twitter acting as groupies supporting his hate campaign.
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  14. Enid

    Enid Senior Member

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    "Groupies" - they obviously know as little as Pemberton about ME. (I've met a few around here).
    GracieJ likes this.
  15. user9876

    user9876 Senior Member

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    It amuses me to think of them as groupies gathering around their big famous dr jounalist.
    GracieJ likes this.
  16. Mark

    Mark Acting CEO

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    IVI made some very strong points in my opinion, and seems acutely aware of how arguments that make perfect sense to us are perceived differently by others. The message so often does not translate, and I hope readers are taking IVI's feedback and suggestions seriously. I think he's basically right about 'what works' and how certain natural 'campaigning' responses and reactions are perceived. (I disagree wholeheartedly with the disassembling of the concept of community, and continue to believe in the power of community-building, but critique of group-think is always welcome as far as I'm concerned, and so are intelligent comments that challenge us to think again).

    In the case of responding to articles like this one, and the arguments about 'psych' vs 'biomedical' issues, I think there is only one simple point that needs to be made: one fact that the public need to be aware of. It's the fact that classification of an illness as 'psychological' makes it ineligible for long-term insurance payouts. I say it's a fact...but I haven't checked it...and I would dearly love to see a referenced and provable explanation of how that works - any laws that allow this and any insurance policy statements to demonstrate it.

    Point out this fact, reliably backed with evidence, and combine it with an estimate of how much insurance companies save by this classification, and referenced, evidence backed statements of the interests of the psych lobby researchers in insurance companies, and I think there should be a compelling paragraph there.

    People might not understand the niceties of arguments over 'naive cartesian dualism' and the distinction between the anger of patients and mental illness, but most people totally get what it means when money is involved.

    People can very easily understand that patients are angry about their illness being labelled psychological simply because that means insurance companies don't have to pay out. People can totally understand what is going on there, and really I think that is just about the only thing we need to be saying, in our campaigning, about this question. A well-referenced, evidence-based series of 3 sentences that demonstrates exactly how it is. Without a hint of conspiracy - because you don't need to be a conspiracy theorist to believe in the concept of "conflict of interest", or to understand that money talks.

    That "fact" (?) that insurance companies don't have to pay out (after 2 years) for "psychological" illnesses is the absolute key to this argument. Nobody I have spoken to (in real life) is aware of that fact, and it changes everything: I've seen the light bulbs going on when I mention that point. We've got to find a way to make people aware of that, and steer away from allowing this to be represented as a shock-jock style argument about whether our angry and cognitively-challenged responses to being accused of psychiatric illness are proof that we really are mad.
    GaryK, Valentijn and currer like this.
  17. biophile

    biophile Places I'd rather be.

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    Firestormm, re post #107, thanks for the reiteration and clarification.

    Whether or not it is more "productive" to challenge other aspects of the article depends on what you deem to be productivity. Frankly I would be surprised if any approach was significantly productive. Do you remember any examples of psychobabbling "shock jock" journalists changing their standards or opinions just because patients/advocates have pointed out flaws in their articles and rationale? It would probably be a colossal uphilll battle just to get him to admit that he was wrong about certain details of the Lipkin study and the PACE Trial, or that such errors were significant.

    Although I guess it is also about the audience being aware of the corrections, but again, who are the audience going to trust more, Pemberton or those of us suspected to be extremists?

    Considering the history of dubious claims about critics, I disagree that it is "pointless" to question details about the harassment, and with the suggestion (?) that challenging such claims is somehow condoning harassment. As for me, I explicitly stated that I denounced them, and so do many others who are wondering about the reality of the claims. I do not really doubt that it occurred to some degree, I just question the scope and severity of it, and the timing of the article.

    Regarding your example of the referee who was harassed online, AFAIK referees do not have a history of conflating reasonable criticism with personal harassment, nor publicly regurgitating stupid dismissive explanations for the motivations or behaviours of sport fans. As I outlined before, the history and politics of ME/CFS have made some of us suspicious whenever we hear claims of harassment.

    As for whether asking for such evidence would reflect poorly, well, I would care more about getting to the bottom of the situation. Should we be more concerned with how other people perceive the ME/CFS "community", so any claims involving harassment cannot be challenged because of some taboo about how it reflects upon us?

    If Pemberton as a professional is so sloppy as to have stated that tissue was involved in the Lipkin study, and 1 of 3 people in the PACE Trial "recovered" (previous article), and is now citing Nater et al (2010) on Twitter as evidence for personality disturbances, how can I have automatic confidence in any of his other journalism? And if he conflates critique with harssment as many other journalists have done, how can I have confidence that all those 200 people or so were actually engaging in harassment as opposed to critique?

    I hope you are not implying that the main motivation for the criticism is because people have superficial issues with classification, or that it does not really matter if ME/CFS is classified as a mental illness? I cannot speak for other people, but articles on the "psychology of ME" often frustrate me because they contain half-truths, significant distortions of the evidence, speculation and working hypotheses presented as established fact, erroneous claims about the main motivation behind the bulk of the criticism, amateurish musings about the irrelevance of the mind-body problem, and/or psycho>somatic ideologies or justifications under the guise of philosophical physicalism.
    GhostGum likes this.
  18. Jarod

    Jarod Senior Member

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    Hey Mark,

    This statement explains the 24 month exclusion for mental disability payouts.


    Jarod
    currer likes this.
  19. PhoenixDown

    PhoenixDown Senior Member

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    I have to disgree with this. Invoking the term 'psychological' invokes all sorts of problems, not just for those with ME/CFS/Fibromyalgia but for for those with depression, and ADHD and such too. The main problem in the case of ME/CFS/Fibromyalgia is that the 'psychological' label imposes the idea that the patient can't be trusted or isn't mentally able to know whether their symptoms got worse through exercise or other stimulus, and that the practitioner knows better (all whilst revoking the burden of proof regarding the practitioner's claims). This is a terrible state of affairs that needs to be changed.
    currer likes this.
  20. Bob

    Bob

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    I've responded pretty negatively to IVI on this thread, but I think he has said some insightful stuff, such as the following:

    Although there is some logic in the last two quotes, they are also in danger of being patronising.
    I think that many patients are involved in intelligent, reasoned and well informed advocacy work.

    I also think it's a bit ridiculous that we can't deny that we have a psychiatric illness, in case it reinforces the belief that we do. I do see some logic here (i.e. we don't want to look like we "doth protest too much"!), but I think we can still express our opinion about the nature of the illness, and provide evidence in terms of the results of the FINE Trial, and the PACE Trial, etc.

    IVI is in danger of portraying us as child-like idiots screaming: "I don't have a psychiatric illness! I don't! I don't!"

    Yes, it's helpful to make a careful argument in favour of biomedical research and treatment etc.
    And I think we need more resources available to us.

    I don't know where the patient organisations are in all of this.
    There should be a webpage available which we can provide a link to, or which we can quote, which makes the case for the biomedical nature of ME, so we don't have to make a new argument each time, from scratch.
    This should include a comprehensive list of symptoms.
    And the most convincing biomedical research should be listed.
    The PACE Trial and the FINE Trial should also be summarised in the same place.
    And the various diagnostic criteria should be listed together.

    If we had a wiki on phoenix rising, we could perhaps make an attempt at such a project.

    I don't know the absolute facts either, but I have read that insurance payments for psychological illnesses in the USA are available for a much more limited amount of time. I don't know if health payments in the USA might include replacement wages, but if they do, then the savings would be massive, if payments are limited to just a few months or just a couple of years.

    Edit 1: I see Jarod has provided some good evidence.
    Edit 2: Yes, Jarod's document confirms that the insurance payments are intended to replace wages.

    Are you sure about this approach Mark, because I've seen someone on Twitter using this as an argument against us... They were questioning why we would be so against a psychiatric diagnosis, and wondered if it might be to do with insurance payouts. Maybe the argument would have a different outcome depending in which country you make the argument (e.g. UK vs USA)?
    Valentijn and GhostGum like this.

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