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A disease with two faces? Re-naming ME/CFS
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The Psychiatric view of ME/CFS. What is it?

Discussion in 'Action Alerts and Advocacy' started by Orla, Dec 19, 2009.

  1. Dr. Yes

    Dr. Yes Shame on You

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    Fantastic post, Orla! These quotes ought to be posted on the new "Home" page of this forum. Or at least put in a 'Sticky'.

    Every independent, professionally-oriented CBT description I've found online makes no bones about it: CBT is meant for people with fundamentally unhealthy beliefs stemming directly from neurotic thinking, not from physical illness per se. It has been employed for people with physical illnesses (mainly ME/CFS of course!) but only with the rationale that they have developed some mild neurosis as well which impairs their functioning. And, of course, many who recommend CBT for ME/CFS believe the neurosis (or even psychosis) to be primary, or 'co-primary' (if they believe there is physical illness at all).

    Thanks for reminding me of the Canadian document's quote; I knew I had read that somewhere but couldn't remember where! Wanted to cite all this stuff for people in a previous conversation who believed they knew the 'real' definition of CBT. Not one of 'em's a psychologist, of course... and I'm quite sure, as mentioned in the first quote, that many psychologists aren't aware of the basis for it either. :Retro mad::confused:
     
  2. Orla

    Orla Senior Member

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    I didn't know whether to post these or not as they are so offensive, but it can be useful to know how some doctors can think about ME/CFS patients. Some of these quotes are from a good few years ago, but some are more recent. Regardless of time frame they are quite consistent in their contempt for patients. It is interesting to see how the views expressed below also fit in with the views of the psychiatrists quoted earlier in the thread, even if they are put in a more blunt and basically tabloid way. If anyone is feeling a bit bruised emotionally you might want to leave reading this for another day.

    I got this section below from http://www.meactionuk.org.uk/ME_-_Who_is_attacking_whom.htm

     
  3. Orla

    Orla Senior Member

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    I forgot to post a link to this. Shocking report from the UK in 1993. Note the Neurologists comments:

    http://niceguidelines.blogspot.com/2010/01/dr-anne-mcintyre-interviews-ean-proctor.html

    Edit: someone on another list I am on has the full tape of that Frontline programme and has a transcript of that section, including more comments from the Neurologist.

     
  4. kurt

    kurt Senior Member

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    USA.Earth
    Thanks for that new info Orla

    I think several of my doctors could have said the above. Maybe more ME/CFS patients need a 'litigation history' and should 'demand therapy'. Maybe we have not made sufficient legal cases. This has bothered me for some time, we can sit and complain all day long about the psychologizing of CFS, but what do we do about it? Clearly we have few advocates, in our personal lives or in the public square. Usually with most disabling illnesses it is parents or friends or partners who make a big stink, file lawsuits to get care for their loved-one, etc. But the idea of psychologizing is so strong that it seems to also sidetrack many of those who should be advocating for CFS, and helping turn the tide of public opinion.

    There is a psychological problem here, a public psychosis about CFS that has served to insulate the medical profession from the natural consequences they should be suffering for ignoring such a major sick population.

    In defense of psychiatrists, at least they do believe we are sick. I appreciate that fact even if they do fail to recognize what they can and can not treat successfully. After all, if the psychologizers were correct they should have at least an 80% or higher cure rate by now. This should be simple to solve if they are correct.

    Also, psychology is actually a very effective field in medicine, they have better cure rates in their patient cohort than surgery in its cohort, for example. I don't recall the study title but there was a meta analysis years ago of the most effective medical therapies, and psychiatric treatments were more effective on the whole than most medical treatments are for various biological illnesses. So therefore, if CFS were psychological, it would probably have a high cure rate by now.

    There is another benefit from the emphasis on psychological problems in CFS, we probably are one of the most mentally healthy patient groups. I spent years working on all of my 'psychological issues' thinking that would help my CFS, and I solved so many issues I had, that I can honestly say I am far healthier mentally than I ever was before CFS, even with the brain fog.

    Of course when we do get a scientific consensus about the cause of CFS most of this will disappear, may take a few years for the older doctors to 'get it' but that will happen.

    Therefore, I see the REAL issue here not as psychologization but rather the lack of cooperation among CFS researchers, the lack of a coordinated effort to follow a systems biology paradigm (the only one that makes sense for CFS), and the lack of a consensus opinion that makes sense and squares with ALL the research (and not just the research that supports this or that view of CFS). We NEED that consensus, that will allow things to move forward in a positive direction.
     
  5. Dolphin

    Dolphin Senior Member

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    Sorry to be a bit picky but not sure why consensus is necessarily so important. I think it's such early days that I'm happy if different angles are looked at and think a consensus would be premature e.g. some people think particular viruses are causing ongoing problems, others might say it's hit-and-run or would mention different infections, etc.
     
  6. kurt

    kurt Senior Member

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    Consensus would be easy if the answers to CFS were easy and obvious. But in this type of complex illness you have to ask where to draw the line. When do we say 'well we do not have all the answers yet, but we DO know this much and this is what CFS looks like at this time.' That can create a type of 'critical mass' that can be used to launch serious research and advocacy efforts. Too much uncertainty for too long creates a type of uncertainty culture that I think is part of why we are so disenfranchised both politically and medically. Also this leads to a kind of desperation among patients, makes us more vulnerable to unproven ideas about CFS.

    And yes, I certainly agree that many angles must be looked at in ongoing CFS research. The point of a consensus is not to restrict research, but rather to build a little stability in our image. Without a scientific consensus about SOMETHING related to CFS it is hard to build a strong body of research that holds together coherently. As a result research is scattered and then it is impossible to point to any clear view of CFS that we can insist the medical community adopt. Also without a consensus it is more difficult to defend ourselves against crazy ideas like the notion that people would self-inflict CFS on themselves, or that there is some psychological benefit from this type of suffering.
     
  7. Mithriel

    Mithriel Senior Member

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    Scotland
    Kurt, I may be reading your meaning wrong but you seem to be saying that there will come "critical mass" of evidence that will change things.

    That critical mass was actually reached in the 1980's before CFS was invented. No one suggested it was anything like neurasthenia until SW came along and insisted it was. Since then, the focus has shifted from a disease where there is a unique pathology related to exercise to a dust bin for any form of fatigue. I was ill for seventeen years before anyone mentioned fatigue as particularly important and I certainly never experienced it - malaise and collapse, yes, but not fatigue.

    Since then all physical evidence that does not support the biopsychosocial view had been ignored, trivialised or distorted.

    The number of they claim have it has been expanded and the symptoms pared right down. How many of us recognise ourselves in the description of the average patient, or haven't met lots of people who had "ME " a few months and got over it (usually by being morally superior)

    The hope with XMRV is that people outwith the stranglehold will have a vested interest in the research and it will be too big for the psyches to suppress.

    Mithriel
     
  8. Orla

    Orla Senior Member

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    Exercise programmes

    Thanks for the thoughts everyone. I have a few thoughts on these issues also, but first I had meant to comment on something Tom posted way back in December. Here is Tom's post:

    Back to me (Orla)

    This is why the CBT/GET issue is so important (other than that these treatments can make so many people with ME/CFS worse). These people think that we can exercise our way back to full health, so that there is no need for biomedical research or treatments. This is partly why these ideas are so dangerous, as when the authorities (both state and medical authorities) buy into these views it means that they also have no interest in funding/doing biomedical research, or exploring biomedical treatments for us. So if the CBT/GET promoters have the ear of the authorities we will never any decent treatments, never mind a cure.

    Also, on an individual patient level, many patients are being told they can exercise themselves back to health, and often (usually?) not warned of any possible adverse effects of exercise, or that patients might have a ceiling/limit to their activity levels over which they might not be able to go. This happens because these practitioners don't recognise that we do have a ceiling, or that we have an ongoing organic medical condition.

    Instead of warning patients about the potential adverse effects of exercise programmes, these practitioners often go out of their way to reassure the patients that they cannot harm themselves with an exercise programme. They also often reassure patients that what we would call post-exertional malaise, or exercise intolerance, are purely the effects of deconditioning. They often advise patients that the worsening of symptoms due to the exercise programme is temporary, just a sign of deconditioning, and that it will cease over time.

    To give one example of this, I have a copy of a document which is given to patients who attend the CFS clinic at Royal Liverpool University Hospital in the UK. See post below. (I have other examples which I will post up again)
     
  9. Orla

    Orla Senior Member

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    CFS/Exercise programme, Royal Liverpool Hospital

    Quotes from a handout given to patients attending the Royal Liverpool Hospital CFS Clinic. I have put the page numbers after the quotes.


     
  10. Martlet

    Martlet Senior Member

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    Near St Louis, MO
    So, the other day we were at a DIY place. HUGE, it was, with everything we needed scattered about all over the show. My legs had that familiar "wading through water" heaviness. Then came the muscle pain. Then, a muscle in my left thigh "locked," for want of a better term, and my leg almost gave way. I hobbled back to the car leaning on my husband. What should I have thought about that? I know, I know!

    Fatigue won't hurt. Press on.

    Muscle pain won't harm, press on.

    A muscle spasm will not harm me, crawl on...

    Sorry Orla. I know this is a serious thread but I needed a little rant.
     
  11. gracenote

    gracenote All shall be well . . .

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    Orla,

    Is that what is being handed out currently? Or is it older? Is there a date on it? It has seemed to me, that over time, the psych lobby has gotten less blatant in their public words. I could be completely wrong about this it's all pretty new to me.

    The advice is so wrong that it's hard to believe that something like that is still being handed out. Martlet, I want to rant with you, even though I am one of the fortunate ones who never got such ill advice.
     
  12. Orla

    Orla Senior Member

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    Hi Martlet

    I hope you didn't interpret those symptoms as signs of disease, as otherwise the thought police might come and get you.....

    I know what you mean though about needing to let off steam. I think I might need post-traumatic stress counselling from just reading the document! It is shockingly bad.

    When I have a chance to type up more of it I will give it a thread of its own, as it is an interesting example of the practical application of the psychiatric view of ME/CFS.

    Gracenote, the date 2004 is on the document, it was definitely in use still in late 2007. I was sent a copy by someone in Spring 2008 and it seems to have been still in use at that stage. I am checking whether it has been in use more recently, but I have no reason to believe that Liverpool have changed their attitude.

    I am wondering whether they will suddenly start to alter some of these documents for patients if the XMRV looks like it will pan out??

    I have some other interesting bits of info about Liverpool, but too "tired" to post up at the moment,
    Orla
     
  13. Gerwyn

    Gerwyn Guest

    psychology versus psychiatry

    psychiatry has never cured anything their favourite tools of CBT and behaviour modification were developed by psychology which recognises their severe limitations lack of generalisability and very high relapse rates psychiatrists take no note of the developments in neuroscience re the development of the mind and how things can go wrong so they resort to chemical coshes or frying brains.Kurt is quite right if the problem was psychological there would have been a high cure rate certainly more than the current 4%.Psychiatrists cant even deal with their own neurosis and narcisism let alone any one elses troubles at worst malign at best floundering.I think I'm about to have intermittent outburst syndrome again--love that DSM!
     
  14. Dolphin

    Dolphin Senior Member

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    There have been psychologists who have bought into the idea that all patients basically need is Graded Exercise Therapy (GET) and CBT based on GET.
     
  15. Dolphin

    Dolphin Senior Member

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    You're still assuming a consensus is good/going to be something you agree with. The NICE guidelines is a consensus document - pretty much the only thing offered is GET and CBT based on GET.

    The (UK) Medical Research Council (MRC) research strategy is a consensus document. They said (toned the language done in the final version but it's basically the same document as the draft) that one didn't need to know the cause to treat a condition. Their position was the way to go currently was to study rehabilitation strategies (CBT/GET) and studies into the aetiology and pathophysiology weren't necessary.
    The MRC has only ever approved grant applications from psychiatrists and psychologists who thought that GET and CBT based on GET were what people needed.

    A consensus is based on which people you get to agree the consensus.
    Peter White could get people into the room to agree a consensus that Chronic Fatigue should be the only symptom required to satisfy a definition of CFS.
     
  16. Orla

    Orla Senior Member

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    Institute of Psychiatry GP training video

    I have put a piece below from a training video for Doctors that was produced by the Institute of Psychiatry in London. This is the current page advertising these videos

    http://www.iop.kcl.ac.uk/departments/?locator=367&context=789

    There was a more detailed page originally but seems to have been removed. This is what they said about the ME video on their webpage :

    You can see the original page where they were selling them here (but it takes ages to download as it is an archived page)

    http://web.archive.org/web/20060222120553/www.iop.kcl.ac.uk/iopweb/departments/home/?locator=412

    Someone posted details about this series of videos on various UK M.E. lists on March 27th 2007. Round about the 8th April the Institute of Psychiatry deleted the page with info just above (so very probably in response to being caught out).

    Someone put snippets of the videos on You Tube, but unfortunately closed their You Tube account, so you cannot view these anymore. I think a friend of mind has them so don't buy them anyone! I have the transcipts of them anyway.

    The piece below starts off mildly enough, and you might think it is not too bad, but wait till you get to the end. I have highlighted the bad bit at the end. The rest of the videos were pretty awful also, but I just wanted to highlight the poor advice on exercise here. The main thing worth noting is the idea that they want to break the link between how you feel and whether or not you exercise, so they still want people to exercise even if they feel awful.

     
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  17. Orla

    Orla Senior Member

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    Patient experience of UK Fatigue clinic

    I thought this was an interesting example of an experience by a patient at a UK Chronic fatigue clinic.

    Source: Campaigning for Research into ME (RiME) Newsletter
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Letters re. NHS Clinics - July 2007

    This newsletter contained extracts from letters sent to Des Turner, Chairman of the APPG on ME (This is a parliamentary group on ME/CFS).

    ------------------------------

     
  18. Orla

    Orla Senior Member

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    From patient rep

    The RIME e-newsletter from July 2007 also quoted these:


     
  19. oceanblue

    oceanblue Senior Member

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    I'm a little late to this thread but thanks to Orla for assembling such a comprehensive resource on the 'abnormal beliefs and behaviour' model of CFS. Reading it all now, I'm struck by how much of this model is explicitly laid out in the PACE trial paper and manuals as the basis for CBT and GET. I'm pretty sure this was done deliberately, so that the presumed success of these therapies would validate the underlying model. However, the relative failure of PACE does the reverse - it seriously undermines this model. The model assumes that beliefs and behaviours are the primary drivers of CFS and predicts that CBT & GET to change these beliefs/behaviours will lead to recovery. Well, it didn't work out that way.

    As far as I can see PACE does more than merely test CBT/GET, it also tests the model that Orla has described here so well. I know others have mentioned that the weak PACE results undermine this model, but I think we can do more to tackle this flawed model head on using PACE, but also the unsuccessful FINE trial that was based on a deconditioning model.

    Thought this was interesting too, from one of the papers pointed out by Orla:

     
  20. Orla

    Orla Senior Member

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    I thought I would bump this thread in case anyone is new to this area and wondering what the controversy with Simon Wessely is, and also there are some quotes from him in the first few pages. He is like a bad penny or something, constantly promising he is leaving the area and yet he just keeps showing up. He has had something published this year so I will have a read of it and if there are any interesting quotes post them up.
     

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