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Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout

Discussion in 'Action Alerts and Advocacy' started by Orla, Mar 25, 2010.

  1. Orla

    Orla Senior Member

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    Chapter 10 How Breathing Properly Can Help you Relax

    [Orla - They try to put symptoms, oops sorry physical sensations, down to hyperventilation. They say..]

    [Orla - They have tips on breathing. Some of it looks ok, but I am not buying the whole hyperventilation thing, and they are certainly exaggerating it's importance. It all fits into their stress model of ME/CFS.

    I just came across these 2 articles which are interesting (note who was involved in the studies, and the dates, which are well before the Liverpool booklet). My emphasis in bold]

    Even though some of the tips in this chapter look ok, for example a relaxation exercise that some people might find useful, I think the whole (over) emphasis on breathing feeds into the control-freakery of the rest of the booklet. It is just one other thing for patients to worry about that they are doing wrong, and something else to criticise them for.

    Orla
  2. Orla

    Orla Senior Member

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    Speaking about Hyperventilation

    Someone posted this information on another e-list I was on, when they saw some of the stuff from Liverpool about Hyperventilation. This guy has nothing to do with Liverpool (not that I know of anyway), so I am not suggesting a personal link, but it is an interesting little story about someone who promoted the hyperventilation theory of CFS.

    Sometimes these people promote false ideas, they are found out, but the idea still lives on after the debunking. I wonder how many people this guy influenced?


    You can read more from these (short) articles here http://duncan.gn.apc.org/nixon1.htm It is nice to see someone like this getting hammered for once.

    Orla
  3. Orla

    Orla Senior Member

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    Chapter 11 The Last Chapter of CFS

    Finally, nearing the end (of the booklet).

    [Orla - Have we been in outer space or something?]

    [Orla - you won't be getting much useful education from this booklet. They go on to talk about wanting people to look at how they lived their lives before and during CFS, to learn about themselves and their lifestyle.]

    [Orla - The word perfectionist is sometimes thrown about a bit. Sometimes people use it just to mean that they have high standards, or like to do work or some activity as well as they can. But the people in this booklet (and sometimes other psychologists) are using it to mean having unattainably high standards all the time which cannot be met. So it is not just about doing something as well as you can, but about setting an impossible standard for oneself and not reaching it.

    This is an important distinction. Because striving is normal, but being perfectionist then is abnormal. It could also cause someone to feel exhausted, and worn out mentally, if they were constantly over-pushing themselves, and expecting too much of themselves.

    This is an interesting piece from one paper on how perfectionism can be described:

    [Orla - - Before everyone has a heart-attack that Pheby study did not correlate severity with perfectionism]
  4. Orla

    Orla Senior Member

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    Perfectionism and ME/CFS

    It used to be a popular idea, and obviously elements of this thinking still remain, that people with ME/CFS werent really sick. They were just expecting too much of themselves and over-pushing themselves, so making themselves exhausted, and putting their perceived failures down to illness instead of re-setting their personal targets.

    One example of this sort of thinking can be seen from this quote (I havent seen this full article but have taken this from something Margaret Williams wrote):

    Some (as in this Liverpool document) argue that the perfectionism causes stress and the stress causes symptoms.

    The research on this area has been somewhat all over the place in terms of results, criteria used and so on. In spite of lack of solid evidence for their views, some from the psycho-social school of thought, still promote the idea that perfectionism is important clinically. (It is probably one of those Mud Sticks scenarios).

    Here are some bits and pieces from research which are interesting (Any text in bold emphasised by myself. Note that Wessely is involved in the first study I am quoting and he manages to say something sensible for once).



    And from the study I quoted in the pervious post (regarding how perfectionism is defined)

  5. Orla

    Orla Senior Member

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    Perfectionism and ME/CFS

    I'll be getting back to the Liverpool document in a minute but I couldn't resist posting about this.

    Ellen Goudsmit (PhD, Psychology) has this on her website about one study that looked at perfectionism in ME/CFS (my emphasis in bold):

    I found the abstract for this study, and it looks like they are deciding our lack of perfectionism is a problem! These people are like sulking children, if the results dont come out the way they want, they still try to make out that we have personality flaws, and they twist what negates their theory into some other psycho-social criticism. This is certainly how it looks from the abstract, and from what I can remember on comments about it from when it was published.

    [Orla - So maybe we are not perfectionists, but our lack of perfectionism might interfere with "recovery". We just cannot win with these people.]
  6. Orla

    Orla Senior Member

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    Ok, back to the Liverpool document.

    [Orla - Blah, blah, blah. Sore throats???]

    [Orla - Tiredness! I think they are also implying that we are sort of exaggerating (in our own heads) the extent of the problem because of our perfectionism. Because we want to be perfect we cannot afford not to feel 100%. I am not totally sure if this is what they are getting at]

    [Orla - this fits in with what I was saying above about definitions of perfectionism, and how they see perfectionism as relating to CFS]


    [Orla - This is reminding me of something Trudie Chalder said in those awful doctor training videos which you can view (or read transcipts of) here

    http://www.forums.aboutmecfs.org/sh...English-GP-s-on-how-to-deal-with-CFS-patients

    [Back to Liverpool]


    [Orla - Hmm I am guessing this doesn’t include deciding one doesn’t have the energy for an exercise programme.]
  7. Orla

    Orla Senior Member

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    [Orla - That is handy, a built in blame-the-patient explanation if their symptoms continue in spite of the programme. If a patient brings up a continuing symptom, they can just say that it is worrying about it that is causing it!

    It is interesting that they are trying to re-train “recovered” or “recovering” patients (which is theoretically everyone on this programme, from their point of view) to not see their symptoms as symptoms of disease or relapse, but just the result of stress and worry.

    I think this is probably one of the tricks to make their questionnaire based results of their CBT/GET programmes look better. This sort of thing shows the importance of objective outcome measures in trials, otherwise we don’t know are patients really feeling better, or are they just saying they are because CBT has taught them to reinterpret reality, and taught them that thinking about, or worrying about, symptoms is negative and can delay recovery. So this would make patients who had done CBT more likely to put a “positive” spin on their situation, even if it is not the reality.

    It reminds me a bit of the Lightening Process where you are supposed to say that you are no longer "doing ME/CFS", and supposed to focus on the “positive”, on what you can do and not what you can't, not talk about symptoms and so on, so that any account from someone who has done it, and who still believes in it, is unreliable.

    There is more of this sort of rubbish on ignoring your symptoms later]
  8. fds66

    fds66 Senior Member

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    Thank you Orla for all that hard work. I have read all the way through this now. I dont know what to say about it all really. I have heard it all before and it is amazing to see this kind of thing in print. My own experience tells me that what they say will happen does not happen when I try all these things they are suggesting. In fact it differs so much from this description of a slow steady recovery and only symptoms due to deconditioning that I don't even know where to start. Words fail me.
  9. Orla

    Orla Senior Member

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    Thanks fds66. Like you say, the patient experience contradicts what these people are saying. I am almost finished, but there are a few other little gems before the end, which I think shows how they manipulate patients about how to interpret their symptoms (the whole booklet is like that, but they gear it up a notch towards the end).

    Orla
  10. Orla

    Orla Senior Member

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    Chapter 11 continued

    [I wonder what the Department of work and Pensions, and the insurance industry, would make of that suggestion? Many patients cannot work and exercise, or they won’tever get well enough to be considered fully fit, but maybe could work part-time, so long as they rested a lot of the rest of the time. This programme is telling people to get fit first, then work. Ironically if the patients followed this advice to the letter it could delay the return to work while they struggled on trying to get fit. Of course the crazy GET stuff could relapse them anyway so that would also delay any return to work.]

    [Orla - So grow up you big wimps, we all get tired]

    [Orla – So stop being such a hypochondriac. And how are the results of our studies supposed to come out right if you pay attention to your symptoms?]

    [Orla – Sensations, that is what we have, not symptoms. Why didn’t I think of that? If I call my symptom a sensation, suddenly it is not so bad, and actually I can feel it drifting away....NOT!

    They are thinking along the lines of hypervigliance to bodily sensations nonsense that I have seen elsehwere. A few quotes to illustrate this thinking from elsehwere:

    "Many patients become hypervigilant and over-sensitised to physical sensations"

    Cognitive behavioural management of the Post-Viral Fatigue Syndrome Simon Wessely, Sue Butler, Trudie Chalder, Anthony David 1991.
    Quoted in Quotable Quotes
    http://www.investinme.org/IIME ME Quotes Order form.htm

    And another lovely quote

    "Increased symptom focusing occurs in CFS sufferers;..increased concern leads to selective attention and ‘body watching’: this can intensify the perceived frequency of symptoms, thereby confirming illness beliefs and reinforcing illness behaviour"

    Chronic fatigue syndrome: an update Anthony J Cleare, Simon Wessely Update 1996: 14 August: 61.
    Quoted in Quotable Quotes
    http://www.investinme.org/IIME ME Quotes Order form.htm ]
  11. Orla

    Orla Senior Member

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    Following on from above (the section Beware Symptom Watching)

    [Orla - So don't blame us or the programme if you feel awful, and don't worry about it, it is perfectly normal]

    [Orla here we go again, thinking about symptoms causes them]

    [Orla And really it is very inconvenient for us when we are trying to pretend in our research, and everywhere else, that you are better. So pleeease, for your own sake, stop thinking about your symptoms as symptoms, and a sign of disease. If you don't do what you are told you won't get better.

    On a serious note, someone is either recovered or not. The term should not be used if the person is still symptomatic, or becomes symptomatic form normal activities.

    And following on from the above quote]

    [Orla - And by accurate we mean anything that helps us look good. Our trial results will look much more impressive if you trick yourself into thinking you are better than you are, and stop thinking that you are sick and, above all, answer our questionnaire questions correctly. Although just as a safety guard we avoid asking about most of your symptoms on our questionnaires, and we are going to avoid any craziness such as having objective outcome measures.]
  12. Orla

    Orla Senior Member

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    Chapt 11 continued

    [Orla - Also handy for us to keep up the fallacy that you are better, even though you cannot go back to the job you were trained for]

    [These people dont understand pacing. GET and pacing do not go together. One is about set programmes and pushing through symptoms, the other is about adjusting activities depending on how you feel. But they mention pacing a few times in the document, and of course some patients will end up pacing rather than doing GET, and it will look in the research/stats that they were helped by GET.]


    [Orla control freaks]

    [Orla - The Deptarment of work and pensions wont like that]

    [Orla - Lightning Process moment here people, you cannot relapse if you do it properly. I hope you guys are paying attention to what causes and perpetuates ME/CFS]

    [Alice in Wonderland logic. Notice that last sentence, you are not having a relapse, or returned CFS symptoms, just symptoms similar to CFS. By that logic no one would ever have a relapse, just similar symptoms.]

    [Orla - prevents any possibility of relapse?]
  13. Dolphin

    Dolphin Senior Member

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    Don't forget that this is even better than Jedi training.
    Nothing bad can ever affect you in your life once you've done the training. :Retro wink:
  14. Orla

    Orla Senior Member

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    I hope that wasn't sarcasm Tom K :Retro mad: :Retro mad: :Retro mad: Otherwise you might be sent to CBT for some cognitive retraining.

    Orla
  15. Dolphin

    Dolphin Senior Member

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    :Retro smile:
    But my last CBT therapist said I should use humour more. :Retro wink:
  16. V99

    V99 *****

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    So at the end of CBT, if you relaspse, your symptoms are not CFS, but before CBT they are? But you wont recognise this, so how do they? :confused:
  17. Orla

    Orla Senior Member

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    V99 I think I have the answer:

  18. Min

    Min Senior Member

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    ...& Dr Myhill has to face the GMC's disciplinary hearing - it should be the doctors who think up and deliver this potentially harmful rubbish
  19. V99

    V99 *****

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    Humpty dumpty - like it a lot.

    I completely agree Min. Has no one tried suing them?
  20. ukxmrv

    ukxmrv Senior Member

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    The problem V99 is finding lawyers to act for patients and for the doctors involved.

    I've tried

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