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Daily Telegraph: ME isn't 'all in the mind' but it's still a mystery

Discussion in 'General ME/CFS News' started by Firestormm, Nov 26, 2012.

  1. Sasha

    Sasha Fine, thank you

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  2. Bob

    Bob

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    Have you got a link for the thread, please Sasha?
  3. Jarod

    Jarod Senior Member

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    In the internet age where patients, and doctors, and everybody else mingles. It seems like everybody needs to be a little more tolerant.

    The good side of the forums is everybody gets to have input, the bad part is everybody gets to have input. :eek:

    back to this commentary from Dr Sheppard.

    It almost sounds like doctors are being put under some guilt trip by what an angry patient says on the internet. That doesn't seem logical. We don't have the whole picture though, so it's just guessing.

    This suggesting somebody has "mental illness" when never meeting them seems like a serious allegation. I don't know if it was a psychiatrist who said that, but I can't see how one can be diagnosed without seeing medical records or doing testing before throwing around mental illness. Psychiatry just doesn't seem reliable enough to make a mental illness call that hastily from comments to evokative media. Everybody needs to be more tolerant and be a little more careful about what is said on both sides.

    Anyways. Great to have news coverage. Im happy with it. We are really lucky to have all these great advocates that keep chipping away. 20 years is amazing to keep at this.
    GracieJ and Enid like this.
  4. Enid

    Enid Senior Member

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    I think the "some health professionals" believing people with ME/CFS are paranoid and mentally ill is something I can live with knowing where it came from - and to be frank that in a way always was their position - imagining an illness, all just in the mind (and all the negative press to prove it). It's old hat now, much long ago and this knowledgable article sets the record straight.

    Might I suggest the "health professionals" concerned now move forward and change their beliefs - how to make an illness disappear doesn't work.
    GracieJ and Min like this.
  5. Sasha

    Sasha Fine, thank you

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    Bob likes this.
  6. Bob

    Bob

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  7. GracieJ

    GracieJ Senior Member

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    Double like, and you said it!! Even as well as I'm doing now, if I had to be back at work at a job that starts at 8 am in the morning, I would be in deep trouble already. My job starts at noon, ends at 6 pm, and has good breaks. Otherwise, I don't think I could be working.
  8. Sing

    Sing Senior Member

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    A couple of thoughts on the theme of Public Relations:

    The Telegraph is the upper class newspaper in England, I believe, so its stories do communicate to people in leadership or powerful positions.

    Secondly, the picture of Shepherd and his dog is a very appealing image to its audience. Part of British culture involves valuing animals, especially dogs, very highly. Portraying anyone sick or needy in an appealing way is smart Public Relations.

    Another thought is that we patients often have to traverse a complicated, contradictory set of social requirements in order to communicate effectively. It seems we can't just present ourselves as sick and needing care. We also have to present ourselves as worthy, good people who are rational and aware of the social context, how we fit in and work with others. This social performance and capacity for perspective and good, rational relationship seem to be the main medium through which help might flow. In other words, the ironic, contradictory situation is that we have to do our own Public Relations first before a lot of others will even consider helping.

    It shouldn't have to be this way, and it ought to change once there are accurate, accepted definitions for ME and CFS, as well as medically accepted biomarkers and tests. Then we will be given the social recognition as well as the medical recognition, etc. and we won't have to engage in Public Relations before being regarded and treated appropriately with this illness.

    Personally I feel in a "damned if I do and damned if I don't" situation now. If I do not present myself well, as rational, knowledgable and organized, I will not have a chance at communicating effectively with potential helpers. However, in as much as I am able to pull off such a performance, this will strongly suggest that I am high functioning and not sick. The fact that I prepare for days in advance and rest for a day or more afterwards, there is never time to explain--and I doubt it would be believed. If I were to come in "as is", however, I would be functioning far too poorly to be able to communicate effectively at all. If I could be accompanied by a knowledgable advocate--which I do not have--that would split up those two roles much more plausibly.

    Social presentation is the coin of the realm, in Britain, as well as everywhere else. As least, to get a foot in the door. PWME in Britain also feel fortunate to have a Countess advocating for the cause in Parliament. A seedy, incoherent, homeless person would not be given any credence. Not liking this or not being able to function this way does not let us off the hook at this stage of the game.

    It looks to me as though Dr. Shepherd is doing his best to advocate and communicate on behalf of those with ME, but he has to walk this same path of social contradictions the rest of us do until the definitions, tests and, hopefully, treatments, become settled and clear.
    Valentijn, natasa778, maryb and 3 others like this.
  9. Jenny

    Jenny Senior Member

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    The Telegraph is a right wing broadsheet newspaper, not particularly 'upper class'.

    Jenny
    justy and Enid like this.
  10. Merry

    Merry Senior Member

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    Thanks to all of you. Your discussion of the nature of the newspaper and its audience and the additional information some of you provided, particularly Dr. Shepherd's follow-up explanation of what he said during a lengthy interview, helped me understand the significance of this article.

    Something I don't believe I've ever mentioned on PR is that I got my CFS diagnosis in 1990, after more than twenty years of illness, because of an article in a UK newspaper. When my health declined significantly in 1988, I wrote in some detail about the symptoms to a new friend in the UK. Sometime within the next year or so, he mailed me a long feature story about people ill with CFS (or maybe the term ME was used). I was sure I was ill with the same thing as the people in the story, began to look for information, found a support group, and got a recommendation for a doctor from a member of the group. I don't remember the name of the newspaper, but I'm think it was a major newspaper and definitely liberal (my friend wouldn't be caught dead reading a conservative paper). So what happened after this (the late eighties, early nineties)? Why did UK newspapers stop covering ME/CFS in a helpful, sympathetic way? I know I'm taking the thread off topic (I apologize for that), and I know probably no one can answer my question. I've just been puzzling over this for a long time.
    justy, Jarod and Bob like this.
  11. Esther12

    Esther12 Senior Member

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    Merry: My guesses...

    I think that the promotion of the notion that compassionate media coverage was leading to social hysteria, and making patients sick had a real impact. Also, Britain is still a pretty class based and deferential society: there's a tendency to just promote the claims being made by those in authority, particularly if they are claiming scientific authority.

    Over the last decade, there's also been a more general shift in the way that the sick and disabled are viewed, partly related to the promotion of a biopsychosocial approach to disability benefits. Disability hate crime is up, people with all sorts of entirely 'respectable' problems are being treated with suspicion and animosity, and CFS is less respectable and treated less well.

    There's a bit of a pincer movement going on in the UK for disability issues amongst those with power:

    Those on the left: like the sound of a paternalistic pragmatic biospychosocial approach but don't seem to have realised what impact it will have.
    Those on the right: Like that they can use BPS as an excuse to cut-backs and acting as if those with health problems need to be motivated by more poverty, rather than trapped by having a degree of financial security.

    The only real dissent comes from groups on either side without any real power or influence.

    I'm sure that the anger of CFS patients is off-putting to many too, particularly as the association with mental health problems can be seen to discredit patient's and their reasons for anger. Also, the London science media scene is pretty small, with many of the people in it having connections to Wessely and his wife.

    I'm sure that there's a lot more to it as well.
    Jarod and Merry like this.
  12. Merry

    Merry Senior Member

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    Esther12: I shouldn't have said probably no one could answer my question. Quick and yet thorough. Thank you.
  13. Bob

    Bob

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    It was during the late 1980's and early 1990's that 'CFS' began to replace 'ME'.
    The Holmes CFS definition was first in 1988, then we had the UK's Oxford CFS criteria (the worst definition of all) in 1991, and then we had Fukuda CFS in 1994
    Long-term UK ME patients tend to say that things were much better for them (in terms of how people treated them and the illness) up to this time.
    And then, when 'CFS' came along, ME and CFS started to be treated with disdain and neglect.

    Long-term patients watched people like Reeves and Wessely aggressively promote CFS as a psychological illness. They watched the whole process purposely unfold.
    Merry and Jarod like this.
  14. Jarod

    Jarod Senior Member

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    Hey Redrachel,

    It's ok to be bitter and share your feelings. I think it's somewhat healthy to try and discuss the frustration with others that understand. Your in good company here and everybody with our disease understands being bitter and being misrepresented.

    I think I'm finally come to terms with my frustration and feel much more relieved about the whole situation now that I have a better understanding of what the truth is.

    You will get more benefits from hashing through these worries here than seeing a psychologist and who will charge you money and probabably won't know what to say. o_O

    Take care.
    Jarod
    redrachel76, Merry, allyb and 2 others like this.
  15. alex3619

    alex3619 Senior Member

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    Chat can be very good for sorting out worries - psychologists do indeed charge a lot of money. A friend of mine is a rehab psychologist, and she thought that I would be better off spending my money elsewhere.
    Jarod and allyb like this.
  16. Firestormm

    Firestormm Guest

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    Came across a recent comment made on Facebook this morning, one of those "stop and think about it" moments:

  17. justy

    justy Senior Member

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    I can understand why people with enduring, serious mental helth problems could feel upset by some of the 'all in the mind discussion' But i think there are some misunderstandings at play here. Mental health disordersare recognised to be mind/brian/neurologically based. M.E is classified as a neurological disorder and there may well be a brain disorder of some sort going on. But what the poster on facebook may not have understood clearly is that the term 'all in the mind' when directed at PWME has strong implications that it is 'not real' as in they have made it up and are not sick at all. The implication is that we just 'believe' we are sick, whereas all we need to do is adjust our belief and we will be well again. People with Bi Polar disorder are not treated this way - they are acknowledged as being ill with a disease (Bi Polar) that affects or stems from the brain - nobody is suggesting it is 'all in their minds' as in 'they are making it up' for attention or whatever.

    I think it is important that we clearly show the distinction here. If i had Bi Polar or major clinical depression i would be asking for medication and counselling to help me to function and looking for all the support i could get from mental health services etc. As it stands i have a disease of unknown origin, but one which is clearly not a mental health issue. I object to being categorised as a mental helath patient, not because there is any shame in it, but simply because it is not true.

    We must remember that Multiple Sclerosis was defined as a mental health disorder and people suffering from it where treated as hysterical and it was thought to be a conversion disorder.

    all the best, Justyx
    Valentijn and Bob like this.
  18. Firestormm

    Firestormm Guest

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    Thanks Justy. As I said it was a 'stop and think' moment. I didn't think it couldn't be addressed but I did think we perhaps need to be more careful or at least take the time to explain. Always nice to hear and consider the 'other side' of any argument :) Personally, I fail to understand why there is still a distinction between psychiatry and neurology. Shove them both together - lose the names - call it neuroscience or something - and everyone has a neurological disorder. End of the day it's all biological. Neurologists deal with diagnosis and drug therapy and the psychiatrists deal with life management alongside psychologists. What's the problem with that? :)
  19. Stukindawski

    Stukindawski

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    I didn't think 'brain = mind' personally. The brain is an organ where as the mind is a philosophical construct to explain the conscious experience.

    But this is the part where I welcome elucidation :D


    Firestormm

    I imagine you might engender a response or two there. I certainly think the two complement each other. Since the majority of people are not going to have easy access to brain scanning and they certainly wouldn't get one as a matter of routine, a psychiatrist is uniquely placed to act as a referral bridge towards that level of diagnostic inquiry. By spotting behaviour or symptoms that are indicative of a neurological issue, psychiatry is undoubtedly a valuable, practical and efficient tool.

    I've seen the term Neuropsychiatry used before and I know it can stir up a hornets nest of opinion. I do think you need to keep the terms distinct, but certain a 'department' of Neuropsychiatry (medically) and Neuropsychology (scientifically) might create a conducive atmosphere for quality diagnosis and research.

    I think the fear from many would be the effect of a BPS conglomeration of the above. But not everyone is a member of the Wessely school I'm sure. The Wessely School and Professor Blakemore would be the obvious marriage in that instance.

    Ideal world, these terms would marry perfectly. The defining line between sanity and insanity is unfortunately more than a little politically charged (the DSM-V saga is an example of this - Anders Brevik is another) and psychiatry is arguably throughout history a tool too often used in the service of the powerful. Of course, just because a few people might do something incorrectly, doesn't necessarily devalue a marriage of terms. So the rejection is possibly just as political.

    It's interesting, do you think psychiatry has a worse, equal or better status more widely than neuroscience? I wonder if people outside of our bubble think about Frankenstein when they hear neuroscience for instance heh.
    Firestormm likes this.
  20. Esther12

    Esther12 Senior Member

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    I think that CFS patients angry about the specific ways in which they have been treated can come across as anti-psychiatry or stigmatising mental health, but that this is almost always due to poor communication.

    It is possible to come up with psychiatric theories which are insulting, dismissive and disdainful quackery. When patients get lumped together under a diagnosis of CFS, and then treated as if their symptoms are a result of their refusal to acknowledge emotional problems, a fear of activity, social hysteria or deconditioning, then that's quite different from a psychiatric condition like schizophrenia - treating patients with schizophrenia as if their problems were the result of a failure to acknowledge emotional problems, without positive evidence that this is the case, would also be dismissive quackery. For depression also, there have been plenty of dismissive forms of psychosocial quackery inflicted upon patients, with many thinking it's acceptable to treat patients as if their problems are a result of negative cognitive distortions, in the absence of evidence that this is the case. It seems like there is a lot of spin around the efficacy of cognitive treatments for lots of conditions, including schizophrenia, and I think that this sort of spin and tolerance for misleading claims about efficacy is innately dismissive, and that it seems so tolerated within the realms of 'mental health' is indicative of the way in which those with mental health problems are viewed by those with power over them.

    There sort of topics are so complicated that it is very difficult to express oneself in a way which will not be misunderstood by others (I'm sure I should have written more above to clarify some points... too tired and lazy), and this is particularly the case with CFS, where so many have been promoting the view that the only reason patients are upset and angry is because they stigmatise mental health problems.

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