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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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    I started a thread a while ago on the Psychiatric view of ME/CFS

    http://forums.phoenixrising.me/index.php?threads/the-psychiatric-view-of-me-cfs-what-is-it.1309/

    I thought that it would be useful to give a practical example of how these views influence patient care and medical practice on the ground. I have a copy of written information which is given to patients who attend the Liverpool CF/CFS clinic in the UK. At least some of this information is being used in at least one other UK CFS clinic (and was given to a patient there in the last 9 months).

    There is a long booklet, a shorter handout which has pretty much the same information summarised, and other information, such as work sheets for the CBT sessions.

    The handout also says:

    So it is useful to see the sort of information patients are given on this (and very likely similar) trials. Pauline Powells name is on the front page of this document (more on her below). It is dated 2004. Im (not sure why there is a date anomaly, but maybe they just added to it or made minor alterations??).

    The information reflects the biopsychosocial, or psychiatric, view of ME/CFS. They argue that ME/CFS is caused by deconditioning, stress (which includes fear of symptoms, and fear that you might have a serious disease) and poor sleep quality from poor sleep hygiene. They think the sleep problems we have are caused by the patient's own bad habits, and that these problems are correctable mostly through behavioural methods. Personality style is also a factor according to them.

    These are a few quotes to give you the flavour of the information patients are given:

    And

    The documents give the impression that, because ME/CFS is caused by deconditioning, stress, and poor sleeping habits, patients have the power to correct these and bring about their own recovery. They go on, and on, and on, about Recovery in the document, as if it is this definitely achievable thing.

    I have a funny story about this clinic and recovery. I have heard that as part of the programme people who had previously been on the programme, who were now said to be recovered (by those running the programme), were brought in to meet with patients who were currently the programme. But after talking to them, the patients currently doing the programme realised that these "recovered" patients, were not in fact recovered at all!!

    [Please bear with me as it is going take me a while, and quite a few messages, to upload what I have written on this]
  2. Orla

    Orla Senior Member

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    Some general impressions of the information

    They keep waffling on about determination being necessary to stick to the programme. This puts the pressure on patients to try to stick to it. I would worry that if some patients do improve (even if they improve while not sticking rigidly to the programme), they might think other patients' lack of success is a sign of lack of determination, or weakness, on these other patients part. This is one lovely quote:

    Would that be the not recovered, recovered, patients I wonder?

    In order to appear to have evidence for their theories and programme, they sometimes say something based on the life experience of the healthy population, or other patient groups, so that it looks like they are making sense and "proving" their ideas and programme based on evidence. But some of the “evidence” they are using is totally irrelevant/unproven in terms of ME.

    Something else I noticed while reading it is that it gets more aggressive and pushy in tone as it goes on. It starts off by sounding sympathetic, and saying things that patients might take to mean that they are taking them seriously, but as it goes on it gets more pushy and drops the mask a bit in terms of what they are really thinking.

    For example they seem to start to refer to symptoms more as “physical sensations” as the booklet goes on (they do use the word symptoms still, but start to use the phrase physical sensations more). This is important as they think we are not physically sick, but are deconditioned etc., so we don’t have symptoms of a disease, just uncomfortable sensations resulting from stress and deconditioning.

    Their use of this phrase reminded me of this : “misinterpretation of associated bodily sensations” (from, Richard Mayou, and Michael Sharpe, Treating medically unexplained physical symptoms Effective interventions are available BMJ 1997;315:561-562)

    They also seem to start going on more about “tiredness” as the booklet goes on. This gets really irritating after a while.

    Their ideas about what causes ME/CFS and how to treat it, has them coming across to me as control freaks. I find the information somewhat hysterical in it's reaction to people maybe spending slightly more time in bed than the average healthy person. You would think all hell would break loose if the person relaxes control over their time asleep/in bed etc.

    They also want patients to be very controlled about any activity they do. I think this ideology could actually cause a degree of stress to some patients, as the patient might get stressed about doing less or more on different days, as in real life people don’t do exactly the same thing every day. Here are a few quotes to give you a taste of it (don't worry there will be more later!):

    Valentijn and Snow Leopard like this.
  3. Esther12

    Esther12 Senior Member

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    UPDATE: COPY OF HANDOUT AVAILABLE HERE: http://issuu.com/estherxii/docs/p_powell__liverpool_cfs_centre_patient_handout

    It's gone offline at the original link.

    I've met someone who had recovered via GET and CBT, and it was strange speaking to them. They'd say how totally recovered they were, but that a vital part of their recovery was realising that they were not able to do a lot of the things they used to be able to. They now saw their illness as a good thing, having helped them learn to not do too much, where as those who had not been ill would foolishly do much more.

    I was rather confused by it all, but didn't want to push them on it as they seemed a bit fragile.
    Roy S and Valentijn like this.
  4. Orla

    Orla Senior Member

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    Some background info: Job description Controversy

    This is a job description for work at this clinic that caused some uproar at the time:
    http://www.meactionuk.org.uk/Clinical_Fatigue_Job_Descriptions.htm

    Extract from this:

    A rather feeble attempt at back-tracking on the verbal aggression bit of the add (not the rest) was issued by Fred Nye Clinical Champion, Liverpool ME/CFS Clinical Network Co-ordinating Centre, (and incidentedly member of the NICE Guidelines Development Group). You can read it here:

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0503a&L=co-cure&F=&S=&P=514
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Orla,

    Thanks for your explications of the UK psych view. Wondering if you could email them to see if they are still using the booklet?
  6. Orla

    Orla Senior Member

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    Publications

    Here are some links to articles co-authored by Pauline Powell (whoose name is on the front page of the long document I have, and which was part of the material used in the first study below) and Fred Nye, "Clinical Champion":


  7. valia

    valia Senior Member

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    UK
    So am I :confused:
  8. Orla

    Orla Senior Member

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    Some more interesting background on Pauline Powell: FINE Trial

    [Hi guys thanks for your comments. I will answer again, just want to get some of this stuff up. Some of the information I am posting may seem irrelevant now, but hopefully once I post up quotes from the booklet it will become more obvious why I am posting this information. In my next post I will start posting information on the Liverpool handout, so some people might prefer just to skip down to that]

    Pauline Powell (who wrote the main booklet I have from Liverpool) was also part of the research team associated with Alison Weardon of Manchester University, who is the lead on the MRC funded FINE (Fatigue Intervention by Nurses Evaluation) trials. Some information on FINE here

    and I have just seen this

    and this is an experience of someone who was on this FINE trial (this is just an extract. The full thing is quite short so worth clicking on the link):

    peggy-sue likes this.
  9. fingers

    fingers Senior Member

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    Give me a break please, Orla. I'm still trying to stop the LP/children ME/Esther Crawley stuff, and now you put this in front of me :D:eek::ashamed:;):innocent1::tear::sofa::victory::(:cool::headache::horse::horse::horse::horse::horse::horse: (what's the etiquette on using the :horse:???).

    Could I be banned for using too many contiguous emoticons? I claim mitigating circumstances.

    OK, is the common denominator here the initials PP?

    I need to get myself onto one of these programmes. If it's Liverpool I could stay with my folks. Presumably I have to go via my GP? Any ideas?

    If Fred Nye is Clinical Champion, how do I qualify for the Clinical category so that I can have a crack at his title?
    peggy-sue likes this.
  10. Orla

    Orla Senior Member

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    Liverpool CF/CFS clinic document

    Now down to business.

    The main booklet is divided into sections.

    Part 1: Understanding Chronic Fatigue Syndrome

    and

    Part 2: The Treatment Plan for your Recovery

    As the document is very long I will just post up some quotes from it, and give page numbers. I will scan in some pages. Some pages have diagrams so I will post some of those, and some pages are so bad that it is worth posting them in full. I can scan in and upload shorter document again, which is basically a summary of the longer document.

    This is going to be quite long but it is not a heavy read. It is really irritating though. I am going to try to just post everything as is in the document (e.g. with the bold text the way they have it etc.) so people get a feel for the tone of it. I will put some comments of my own between brackets.


    Cover page:

    When you see what is in it you will see how ridiculous the above statement is.

    The next page is the Contents page, which outlines the chapters. I am going to attach it below , as it gives you an idea of what will be in the document.

    [​IMG]

    Attached Files:

  11. Orla

    Orla Senior Member

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    Fingers wrote

    <Give me a break please, Orla. I'm still trying to stop the LP/children ME/Esther Crawley stuff, and now you put this in front of me>

    Lol! I know how you feel. Sometimes it is just one thing after another. I had been meaning to post on this for a while but I kept gettig side-tracked for one reason or another. It has been driving me crazy the last few days working on it so I just wanted to spread the joy :D

    <OK, is the common denominator here the initials PP?>

    :Retro wink: it took me a while to get that one.

    <I need to get myself onto one of these programmes. If it's Liverpool I could stay with my folks. Presumably I have to go via my GP? Any ideas?>

    Don't worry, you will be able to fashion your own programme once I post up the "cure" details.

    <If Fred Nye is Clinical Champion, how do I qualify for the Clinical category so that I can have a crack at his title?>

    He is retired now.

    Esther, yes it is strange that sometimes people say they are recovered when they are really not. Having seen this document I can understand it a bit better. Of course, people are desperate to be well, and want to believe they can bring about their own recovery, so that plays into it too.

    Justin, I doubt somehow they will be overly forthcoming with me, but I might be able to find out through someone else. There is no reason to think their attitude has changed. I got the information (from 2 people) late 2007, early 2008. I was told recently that documents for patients from Liverpool are being used in another clinic (a patient was given this information in the last 9 months).

    Orla
  12. Orla

    Orla Senior Member

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    Chapter 1: What is Chronic Fatigue Syndrome?

    [Orla – who likes to be ill?? As the booklet goes on, ME/CFS patients are put in a catch 22 position. On the one hand here we are criticised for not resting and on the other we are criticised for resting. They mostly criticise the resting, or what they see as over-resting]

    [Orla - It is a bit of a myth. There is no evidence of large variation in patients activity levels. An interesting quote from a study, incidentedly, done by people from the psycho-social school of thought on ME/CFS: "Compared to healthy controls, no indication was found that the CFS patients as a group were characterised by a high number of large day-to-day fluctuations in activity." van der Werf SP, Prins JB, Vercoulen JH, van der Meer JW, Bleijenberg G. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res. 2000 Nov;49(5):373-9.
    http://webdoc.ubn.kun.nl/mono/w/werf_s_van_der/deteancoo.pdf
    or
    http://www.me-cvs.nl/index.php?pageid=4449&printlink=true&highlight=maastric ]

    [Back to Liverpool document, below]


  13. V99

    V99 *****

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    Brainwashing comes to mind. My question to them would be, how is it possible that my health has improved through pacing and rest, without ever having met one of your brainwashed theapists or even stepping though the door to a clinic? According to them this is not possible.
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  14. Orla

    Orla Senior Member

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    Chapter 2: Muscle Function in Chronic Fatigue Syndrome

    [Orla - There was some evidence for persistent viral infection then, so even if people argue that the evidence was unclear, disputed, not totally proven, or whatever, the statement they make is far too definite considering that there was at least some evidence of persistent infection, see quote box below. Also, it would be a bit narrow to just look at evidence of viral infection in the muscle and not elsewhere, as if evidence of viral infection elsewhere in the body was irrelevant. There was also evidence for ]immune dysfunction, so persistent infection was not the only issue.]

  15. Orla

    Orla Senior Member

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    Chapter 2 continued, piece on muscle recovery after exercise

    [Orla - They neglect to mention this study below]

    peggy-sue likes this.
  16. Orla

    Orla Senior Member

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    V99, yes, wait till you see the rest of it, especially the stuff about having the right thoughts for recovery. Big time brainwashing. As you say, many patients can experience improvement through rest and pacing, and basically managing themselves, which is the opposite of what should happen according to these people's theories.
    peggy-sue likes this.
  17. Hope123

    Hope123 Senior Member

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    Well, if that individual feels helped by it, more power to them and I wouldn't push ask them further as it might cause them distress. They've probably come to some mental acceptance of their illness much like people with other chronic illnesses. But, different from CFS, many people with other chronic illnesses who accept their illness nevertheless still consider themselves ill.

    A large problem with many studies that look at improvement or recovery in CFS is that they don't define these terms well and often use only subjective meaures; when measures like "return to full-time prior work" or "ability to do things comparable to those of your age/sex who are healthy without any symptoms or relapse" are used, the % recovery/ improvement is much less.
  18. Orla

    Orla Senior Member

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    Mitochondria

    The references they give here are GET studies, not biomedical ones. I have read the first one and I cannot see any evidence that they did a study of the mithchondia. These are the 2 studies they cite:

    Patient education to encourage graded exercise in chronic fatigue syndrome 2-year follow-up of randomised controlled trial
    The British Journal of Psychiatry (2004) 184: 142-146
    Pauline Powell, PhD, Richard P. Bentall, PhD, Fred J. Nye, MD FRCP and Richard H. T. Edwards, MB PhD FRCP
    http://bjp.rcpsych.org/cgi/content/full/184/2/142

    Wallman KE, Morton AR, Goodman, C, Grove R, Guilfoyle Am (2004) Randomised controlled trial of graded exercise in chronic fatigue syndrome Med J Australia 180 (9): 444-8.
  19. Orla

    Orla Senior Member

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    Summary of Muscle Research

    [Orla -What can I say....]
    peggy-sue likes this.
  20. Orla

    Orla Senior Member

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    Chapter2 , section II

    [Orla - notice the use of the term physical sensations. I hope you like it because you are going to hear it quite a few times!]

    [Orla it seems to be mostly red blood cell mass that is reduced in ME/CFS, and I dont think this is so much affected by deconditioning Someone correct me if I am wrong. I think I remember David Bell saying this in a lecture he gave.]

    [This document is the first time I saw chair rest referred to. Note that blood clots seem to be very rare in ME/CFS, so patients are moving around a little, and not subject to some of the effects of lack of movement. I think some of the research on bed-rest etc. might be on paralysed patients, or ones who are very immobilised, which is a bit different from ME/CFS. I am just throwing out these ideas]

    [Orla Note: this is not the same as Postural Orthostatic Tachycardia Sydrome or Neurally Mediated Hypotension which many people with ME/CFS have, and which might be more of a problem for them than postural hypotension. Also Postural hypotension happens immediately on standing, but POTS or NMH symptoms can come on more gradually, or happen at at any time during standing]

    [Orla - I promise I am not adding things just to make them look silly!]

    [Orla - they are saying sedentary people feel like we do!! Also note, they are not saying we have to put an increased effort into things, but that we have an increased feeling of effort]

    [Orla Seriously, these people are just trying to pull my leg now saying concentration problems are the result of inactivity.]

    [Orla - dont worry, these inconvenient facts wont affect their theories!]

    [Orla dont mention sudden onset, or sudden improvements, or worsening, of condition]

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