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ME/CFS: A disease at war with itself
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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. V99

    V99 *****

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    Does the APPG on ME know that this is happening? I relise I am most likely uninformed, and they may already know.
     
  2. Orla

    Orla Senior Member

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    Chapter 12

    There is only one page in this chapter. They talk about diary sheets but unfortunately I don't have copies of them, though you get an idea of what they are like from this page. I will scan it in when I get a chance.

    [Orla - there is no evidence for this]

    [Orla - And if you keep a symptom diary you might actually see the world as it really is, instead of the way we want you to see it. And there is a danger that you might answer your questionnaire questions incorrectly.]
     
    golden likes this.
  3. Orla

    Orla Senior Member

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    Patient experience

    This is an account from one patient who attended the Liverpool Clinic. This was posted on another forum in early 2007. I have permission to repost it here. I am going to try to find out more information about the current situation at the clinic, though it is still run by CBT-school believers. I have put some of the text below in bold to highlight some of it.

     
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  4. Galena1

    Galena1

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    Thank you Orla for this considerable contribution. I've only managed up to page 7 so far but will read the rest eventually. It's a very worrying document. Fortunately, my GP doesn't believe ME:Retro smile:is a psychiatric condition. He freely admits that he hasn't a clue what causes it. From time to time he offers CBT/GET but neither of us really believe that it will make any difference.

    My two pence/cents worth re CBT and GET.
    - I was diagnosed in 2005 with ME, 18 months after having to give up work.
    I attended 8 (or 10:confused:) x 2 hour sessions combined CBT/GET about 4 years ago. These sessions were specifically for ME sufferers. I only participated because then, as now, there's bugger all else on offer. This was a 'pilot project' organised by my local hospital and referral was by my GP. My conclusion? A waste of time, the only 'up side' was that I met some very friendly people:Retro smile: The GET component was, basically, do less and stop before you get tired. The whole fiasco was psych based and even requests for basic allergy tests were refused, despite everyone at the sessions having intolerance problems. No physical testing of any sort was part of these sessions, although the odd sound of whale/dolphin 'music' was thought to possibly be beneficial:confused:

    I am currently part way through another group of 10 x 2 hour CBT? sessions as part of another Research Project. This is not specifically ME related ( I'm the only one) but my GP asked if I was interested in getting involved and I only agreed because my doc may lose interest if I don't at least try something he suggests!:Retro wink: Apparently, these sessions are definitely, absolutely, irrefutably, not CBT. Heh! Heh! they can 'dress it up' how they like, but it is still CBT:Retro mad:.
    On to the 'measuring success'.
    1. Each week I complete a Beck Depression Inventory Form. These are 'scored' and returned the following week.
    2. The scores from the Forms are transferred to a graph covering the 10 week period.
    3. A drop in the score over the 10 weeks is used as an indication of improvement and proves that this form of CBT, that isn't CBT :D, is effective. Absolutely, no use for ME but hey... what the hell!
    Looking at my own graph it would seem that, apart from the occasional very minor 'blip', I have pretty much 'flat-lined' and therefore am as deranged as I was when I started:D
    The positives so far? Met some really nice people, again. Thinks.............Yup! That's about it. How the hell anyone can believe that CBT is an effective treatment for ME continues to escape me.
    There is no doubt that some of the non-ME sufferers have benefited from these sessions, but others, including myself, did question my inclusion.

    My own personal GET - I tried to gradually increase my levels of exercise over a lengthy period, and it failed miserably:( The effects/level of unwellness related in no way to the amount/type of exercise taken. A short walk could result in considerably worse discomfort than a 'longer' one, or vice-versa. It is impossible to know how my body will react to any 'exercise' and this is why GET, for me, is a failure. The concept that I should be able to increase my exercise gradually and get fitter is a myth.
    Clearly I'm not thinking positively enough;):ashamed:
     
  5. Orla

    Orla Senior Member

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    Hi Galena,

    Sorry for not replying sooner. Thank you for describing your experience. I do feel patients feel pressure to a greater or lesser extent to attend the clinics and try CBT/GET. I can understand this, as it is difficult not to worry about looking uncoperative if you refuse the only thing on offer. Of course sometimes refusal is a safer option if it is some particularly hideous place they are trying to refer to (so I am not trying to put people off refusing, just I can understand that it can be difficult). This is one of the reasons I am glad I am not in the UK, so I am not being pressurised into this stuff.

    People also often seem to attend these courses also because, as you have said there is nothing else on offer and they feel they may as well try it.

    It is the reality of life that makes a myth of patient choice and right to refuse. And as for informed consent, HA HA. The people running GET programmes do not even acknowledge that we have a physical disease, or that GET can have long-term adverse health consequences, never mind inform the patients of this.

    It is very frustrating that these places do not offer testing. The CBT costs quite a lot per patient (I have figures on this somewhere so will have to dig them out). It would actually be cheaper to offer a few tests instead of CBT.

    :D

    And yes, as you point out, the fluctuating nature of the condition makes GET impossible,

    Edit: some people have posted about CBT experiences here

    http://www.forums.aboutmecfs.org/showthread.php?4127-CBT-and-GET-The-patients-have-their-say


    Orla
     
  6. Orla

    Orla Senior Member

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    Liverpool CFS Clinic handout

    You can now download a copy of the Liverpool Handout for patients here (thanks to the person who did this)

    http://www.megaupload.com/?d=6WMGQHQX

    There is some additional material used at the clinic which I had not highlighted or commented on and will do it when I have the energy.

    Orla
     
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  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  8. Orla

    Orla Senior Member

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  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes, thanks.

    Suzy
     
  10. V99

    V99 *****

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    Doesn't alter my thoughts on AFME. Not a positive step.
     
  11. Orla

    Orla Senior Member

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    Handout

    This page, below, was part of a short handout given to a patient in late summer 2009, who attended an information talk by some of the clinic staff for patients. (patients attended the talk and could then decide whether to do the CBT/GET course or not).

    This page is very similar (possibly identical, I need to double check) as a page from the long handout I had commented on. The ideas are exactly the same.

    [​IMG]
     
  12. fingers

    fingers Senior Member

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    Mimicing - could be the answer?

    Thanks, Orla, I feel so much better now that I know my symptoms are only mimicing.

    F*** me, for 20 years there, I thought I was ill. Phew!!

    Looking forward to this guy sorting out AFME. He's into infectious diseases so obviously understands all this stuff.

    I'm feeling ever so upbeat now.

    F
     
  13. Esther12

    Esther12 Senior Member

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    Are they testing these claims? They don't sound impossible to me (although the third box seems a bit silly). It seems really premature to tell patients that this is what's happening, but a lot of it sounds plausable to me.
     
  14. Robin

    Robin Guest

    Um, so there's "deficiency of cortisol" in box 1, which leads to "adrenaline production" in box 3? So which is it, is the cortisol low or high? That makes no sense.

    I don't believe there's any evidence for deconditioning causing any kind of pain; there's theory about deconditioning increasing existing back pain. Also, I doubt there are any physiological inks between deconditioning and nausea or dizziness either. A lot of CFS patients experience these symptoms all the time, not just during exertion. And heightened CNS causing flu-like symptoms? That's a stretch. People can have full blown panic attacks and feel all kinds of symptoms but they're usually brief in duration and self-limiting.

    They need to cite some sources!
     
  15. Esther12

    Esther12 Senior Member

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    It's a bit of a shame that we've been so badly treated that I really don't know whether the '3 Box Model' is a genuine attempt to understand CFS which they're now busy trying to prove true or false, or just a load of guff come up with to try to entice stubborn CFS patients into accepting their medicine.

    If the PACE trial included before and after measures of the thickness of the heart wall, oxygen consumption, adrenalin production, etc, etc, it would be genuinely interesting.
     
  16. Dolphin

    Dolphin Senior Member

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    Although one might say it wasn't a direct test of the claims, the FINE trial was based on the information from the Liverpool clinic:

    The (recently published) FINE trial was largely unsuccessful (no significant differences at follow-up in any of the five outcome measures they reported, even though it was a large study).
     
  17. Dolphin

    Dolphin Senior Member

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    I think they most likely think "getting people to behave normally" (my words) is the answer and looked around for reasons to claim it might work.

    Yes. Of course, they have actometers and when they got AfME to agree to it in 2001, they were using actometers at the end as well as at the start. But somewhere along the way, they dropped the actometers at the end (so we don't know if people are actually doing more) although still get the patients to wear them for a week before the trial.

    The PACE Trial is costing 5m while the FINE Trial cost a mere 1.3m.
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Orla

    I haven't had time to read through all of this thread yet (and I'm not sure my BP would stand reading it through in one go) but from the posts that I have seen, I just wanted to say thank you for all the work you have done on this issue.

    Suzy
     
  19. Orla

    Orla Senior Member

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    Thanks Suzy, I was thinking I could market the booklet as a cure for low blood pressure :D

    It actually gets worse as you go along :worried:

    I have some more info to post but don't have the energy at the moment, but will hopefully get to it soon. Though that booklet was the main thing.

    Orla
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Absolutely. Why bother messing around with increased salt intake and Florinef when a daily read of this stuff will have you back at 120/80 before you can say "sphygmomanometer".

    It's very similar to that ghastly KCL article by Mary Burgess, based on the work of Pauline Powell.

    Will look out for that.

    Suzy
     

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