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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. Enid

    Enid Senior Member

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    I see there are now 287 comments against the article - not bad for volume and Lipkin etc mentioned. Perhaps not all the telling science but hopefully enough of an outcry one way or another. It may reinforce the psyches opinions but a risk I took - there are so few avenues (or redress) open to break the stranglehold of psychiatry in UK ME. - they refuse to look at the long and growing body of science (and scientists) anyway. That refusal has been the real problem from the beginning decades ago.
     
  2. Whit

    Whit Senior Member

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    Please stop using the phrase "chronic fatigue" to refer to "feeling tired". That's seriously BAD for all of us. Chronic Fatigue Syndrome does not refer to a vague feeling of fatigue, it refers to an illness with PEM among other things. No, you are not "chronically fatigued" if you are depressed. You are depressed!

    Really, if we don't have respect for the name ourselves how can we expect other people to?

    I can't believe I just read what I read on this forum. Kind of upsetting.
     
  3. PhoenixDown

    PhoenixDown Senior Member

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    Amen to that.
     
  4. currer

    currer Senior Member

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    I am not up to going through this thread atm, but I want to make the following points,

    1. I am surprised that the psychs are not more concerned about their claims that ME is psychological considering that they know that proper research is going to be done on ME for the first time.
    Surely they must realise that their position is going to become increasingly difficult to maintain?

    2. Arent they concerned about accusations of malpractice or misdiagnosis once more is known about the causes of ME?

    If they are this assertive in defence of the psychological etiology of ME now, they must know they have powerful support behind the scenes, and this is worrying.
    It seems that they have no fear that they can dismiss any medical findings that will emerge in future.

    Why is our illness such a political battleground?
     
    Jarod and Enid like this.
  5. PhoenixDown

    PhoenixDown Senior Member

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    Again, disingenuously ignoring the fact that the biopsychosocial model dictates that doctors, family, and friends of patients should ignore permanent worsening of symptoms upon exercise or other stimulus, based on the faith or irresponsible ideology that the patient is lying or delusional when he or she experiences such a worsening of symptoms.

    The headline itself is a false dichotomy of virus vs mental illness, again misrepresenting our views. The real reason researchers don't get into ME btw, is that unfortunately you are often seen as a quack if you do purely biological research on ME/CFS/MCS and challenge the status quo. There's a lot of harmful politics in academia, in general not just in regards to ME/CFS, people in charge not wanting their reputations or egos challenged.

    I see they've met the editors of the NICE guidelines & biopsychosocial researchers already then.

    Edit: These links may help a little in seeing why biological researchers of these diseases aren't respected and therefore are put off.

    http://www.bmj.com/content/335/7621/632.3
    http://www.fmnetnews.com/latest-news/physician-attitudes-about-fibromyalgia
     
  6. currer

    currer Senior Member

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    I will answer my own question.

    1. Because we are an expensive illness in health insurance terms, and if our illness is kept as psychological the insurers do not have to pay out, - anything would be justifired to prevent the financial loss of payng out to patients.

    Business and finance have powerful interests here and they do not coincide with ours.
     
    Enid likes this.
  7. PhoenixDown

    PhoenixDown Senior Member

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    Funny you should mention aliens, because everytime I explain that my pain permanently worsens with most normal activities, my doctor looks at me as if I just tried to convince him that I saw Big Foot humping the Loch Ness Monster whilst being abducted by aliens.
     
    Jarod, Bob and Enid like this.
  8. currer

    currer Senior Member

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    I find the pugnaciousness of the psychs at this point in time particularly worrying.

    It could be that they know that no amount of medical research in Britain or the US showing abnormalities will ever be enough to get our illness accepted by the health authorities.

    They could just be preparing to sit out any future medical initiatives and then use the levers of power to bury them again for another thirty years once the interest generated by XMRV wears off.

    How do they know it is safe for them to make the egregious and damaging assertions about us that they do? It is against all medical ethics, surely? Arent they concerned about future repercussions from their behaviour? They must have powerful friends.
     
    Enid likes this.
  9. Enid

    Enid Senior Member

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    That's my laugh of the day - thanks Phoenix. If it's any help I asked my GP straight out - "so am I going bonkers". Emphatic "no" and she turned to addressing symptoms as they arose, with more tests, some treatments (Gabapentin etc) to aid. She did not recommend psychology, now why could that be except trust, completely at odds with the psychos trying to impose a psychiatric framework on ME.

    (Phoenix @ 67).
     
  10. PhoenixDown

    PhoenixDown Senior Member

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    Gavman I appreciate and respect your point of view, and I'll stand up for your right to say it even if it offends people. However this isn't going to change the fact that any gain from such treatments is often outweighed by the social, reputational, and in some cases direct physical damage that the underlying ideology generates. Not to mention the squandering of research funds with seemingly no revision of their viewpoint, and holding back medical progress. Telling a patient that their worsening of symptoms isn't permanent or isn't real, without objective proof, is not only disrespectful but it's unethical. Ditto for rejecting advanced testing (that can mean the difference between the patient being seen as having a real vs unreal illness), which is what the biopsychosocial model does.

    Look if someone took a talking therapy and genuinely improved then I'm really happy for them. The reality for many is that it was of little or no help, and that now people believe their symptoms less thanks to these talking therapies, mostly thanks to the biopsychosocial model & the crooked guidelines it backs up. This is not a stigma that the patient group started, it's a stigma that doctors and researchers perpetuate by telling patients that their symptoms couldn't have worsened, that it's only temporary, that they are being hysterical, or paranoid, or have unwarranted worries about physical pain. It's mostly people pushing talking therapies that create this stigma.
     
    Adamskitutu likes this.
  11. pollycbr125

    pollycbr125 Senior Member

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    I am tired of the rehashing of old news , I am still waiting to hear court reports of people who have been charged with harrasment or worse charged with threats to kill . surely given the amount of high profile publicity this regurgitated story has recieved over the years the press would have any such court cases as front page news .

    pemebrton states approx 200 activists / harrasers well if you take the ball park figure of 250,000 sufferers in the uk (which is prob far higher now as its been that forever) the so called 200 causing all these so called problems that no one seems to have ever been charged with eqautes to 0.08% of the official figures banded about for UK sufferers .

    Oh but wait we know that figure is prob way out now and he also states that some of the threats he has supposedly received aren't even from the UK . So that 0.08% figure which was miniscule anyway just became a whole lot less .

    and they call this journalism ? Who is to say that these people are even PWME? An extremely small minority of people are accused of causing problems yet a whole community of very sick people are tarred with the same brush ?
     
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  12. maryb

    maryb iherb code TAK122

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    Gavman let me find someone to deal with the physical side of the disease, after that and I'll happily spend as much time as they need with the likes of Wessley, White, Chalder etc. From which of course they will realise I'm actually quite stable.
    Of course everything that happens in the body has a psychological side to it but as people say, you don't look at the psychological side of suffering from cancer before treating the illness, for goodness sake.
     
    anniekim, Enid and pollycbr125 like this.
  13. Bob

    Bob

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    There's no need to be upset about what I wrote, Whit. There's good scientific reasons for what I said.

    There is a distinction between 'chronic fatigue' and 'chronic fatigue syndrome'.
    'Chronic fatigue' is not unique to CFS.
    Patients with many other illnesses can also experience chronic fatigue.

    The important thing is to diagnose ME/CFS properly, and to treat it it properly.
    It's only the ignorance of the media and the medical profession that causes the conflation of 'fatigue' and 'CFS', and the subsequent confusion about the nature of ME/CFS.

    People with depression can experience physical fatigue. Depression can have a profound effect on the body.
    Other psychiatric diseases, such as bipolar and schizophrenia, can also have physical symptoms.

    The problem here, is not how we describe the symptoms of depression, but it's how CFS/ME has been defined, using the word 'fatigue'. I remember when I first became ill, and didn't know what I had, I always complained of 'malaise', and never used the word 'fatigue'. 'Malaise' was an appropriate description.

    There's also an issue of how CFS is diagnosed. The best diagnostic criteria are able to distinguish between CFS and 'chronic fatigue'. The ICC for 'ME' uses even more selective criteria to define 'ME'.

    So there is a distinction between 'chronic fatigue', 'chronic fatigue syndrome', and 'ME' (I'm thinking of the ICC for 'ME', when I use the term 'ME', here.)
    A person with 'chronic fatigue', doesn't necessarily have 'chronic fatigue syndrome', because other symptoms need to be present.

    Looking at the dictionary definition of 'fatigue', it shows how inappropriate it is to use the word to define CFS/ME.
    The first definition is 'extreme tiredness', which does not describe CFS/ME. It doesn't describe the pain, the malaise, permanent memory issues, the working-memory cognitive issues, the aching joints and muscles etc.
    The second definition is 'a reduction in the efficiency of a muscle or organ', which is more helpful, but still does not helpfully describe ME, especially because the 'fatigue' is systemic, and possibly affects all the organs of the body, including the brain. 'Fatigue' is usually used to describe muscle tiredness or muscle 'inefficiency', but if an internal organ of the body is working 'inefficiently', such as the brain, or liver, causing a range of symptoms for the patient, then it's hardly appropriate to describe the patient as being 'fatigued'.

    Fatigue:
    1. extreme tiredness resulting from mental or physical exertion or illness
    2. a reduction in the efficiency of a muscle or organ after prolonged activity:
    http://oxforddictionaries.com/definition/english/fatigue?q=fatigue
     
  14. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Fine that’s the way you see it, and I’m sure others will concur with your perspective - But, you didn’t present this as your personal experience or view, you invoked ‘we’ and stated your perspective as fact, which you then presented as ‘foundational’ to an appeal to a ‘community’ which in effect you were advancing as self defining. I can’t see this as anything other than hyperbolic because it demands both a specific shared perspective and an axiomatically shared identity all of which is extrapolated without any reference to validity of dissent or alternate perspective. It creates the absolute reality of an ‘ingroup’ whose sole reference of common identity is oppression by ‘outgroups’; this IMO is neither healthy, nor (and this is the significance to this thread) does it create a basis for effectively challenging such oppression as may actually (as opposed to perceived) exist.

    The ‘ingroup’ construct is self determined for failure because every failure (to engage with an audience outside the ‘ingroup’) actually confirms the very belief on which the ‘ingroup’ solely relies to maintain its internal dynamics. If the aim is to effect change in the perception and consequently the actions of audiences beyond ones narrow personal space, the language and presentation that are used have to be relevant to the audience – not those seeking the change. The various polemics that roll out of M.E/CFS forums/groups may not be intended as advancing, or to be founded upon, conspiracy theories but for the ‘outside’ world, the language and presentation is as ‘mad’ as that of the UFO/Bigfoot/Giant Lizard polemicists.
    I’m afraid the history of cults (in the modern sense at least) suggests that it is only a very short step between nascent cultism and fully coercive behaviours . Thinking alike of course underlies social coalescence – however it makes for very poor advocacy capabilities, which are far more positively informed by multiple perspectives. This thread isn’t about whether it’s fair or reasonable for people who share a perspective to get together and ‘expound’ – it’s about communication beyond that shared perspective. Even if ‘cultifying’ effects are avoided, there remains the issue that communicating from a narrow perspective involves profound limitation – and that certainly affects ‘sceptism’ (and every other potentially narrow focussed grouping). Such a limitation (at least in democracies) rarely has profound impact upon the lives of individual sceptics – that is not the position for M.E/CFS affected people, for ‘us’ there is a profound relationship between our prospective quality of life and the views of the rest of society about M.E/CFS. That sceptics get together and reinforce various stereotypes, has way less impact than such behaviour does upon M.E/CFS affected people. The costs to ‘us’ of ‘ingroup’ thinking are much higher than for the average (not an M.E/CFS patient) sceptic.

    IVI
     
  15. Holmsey

    Holmsey Senior Member

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    Anyone figured out how to comment on this yet, or better still if he has a Telegraph email account.

    I hit the comments button but it doens't take me to an area where I can comment?
     
  16. Bob

    Bob

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    I think you have to register to comment. There is a small panel in the comments section which has the options 'login' or 'register'.
     
  17. Bob

    Bob

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    When I needed to explain how I know that ME has a biological cause, I actually found it quite difficult.
    All I can do is refer people to the biomedical literature, explain a bit about the ICC, and describe the symptoms.
    And also point out the proven failure of CBT and GET to treat ME, and the lack of substantial evidence that it's a psychological illness.

    It would be good if we had some sort of wiki page that we could refer people to, and that we could quote, that had a comprehensive explanation about the nature of ME, and a list of the most helpful biomedical research.

    It would also be helpful to have a comprehensive list of the symptoms that we all experience.
     
  18. snowathlete

    snowathlete

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    This whole thing is just side-plot as far as i am concerned.
    I, and the significant majority of people with ME/CFS do not condone the sorts of things this writer describes. Its a matter for the police and his lawyer. End of that, then, as far as i am concerned.
    Now, the much broader plot is about the misreporting of material that at best is sloppy, unprofessional reporting and at worse is targeting sick people as weak targets to take a pop at, suggesting their illness is psychological. It’s not acceptable, because its already classified as neurological.
    WHO say so, and the UK government and NHS have formally accepted that. Any suggestion otherwise is baseless and well out of date. This is not a battle that we have to win, it is already won.
    It is a physiological illness. Fact. So, any reporter who reports otherwise is going to get "reasonable" comments that strongly disagree with their out of date views. The same thing would happen if they wrote a similar piece about other illnesses that are classified and accepted by the UK as physiological, such as Diabetes or MS.
    It’s a sign of a poor reporter, if they are decades behind the story.
     
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  19. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I'm afraid that misses the specifics of the situation. Pemberton is effectively playing the role of a 'shock jock' using controversy to get reaction - poking an ants' nest to watch how the ants run about and then say "look at all those silly ants" to the amusement of his audience. The audience (Daily Telegraph) is exclusively conservative, primarily middle class and heavily middle aged; Pemberton is fully aware of 'the science', but his roll as a Columnist is not to convey accuracy or reason, but to excite the prejudices of his audience. Arcane arguments about PACE or quotes from academics not openly conservative aligned, are not going to have much purchase in the DT audience. There probably are ways to write a response to Pemberton that could have a positive influence, although I wouldn't trust my very much non conservative perspective to confer the necessary insights.

    IVI
     
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  20. currer

    currer Senior Member

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    I am waiting for a referral to an NHS consultant.

    I hope the vicious misrepresentation in the papers does not lead to him refusing to accept this referral.
     

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