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PACE style CBT for CFS/ME - should it be scrapped?

Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, Jun 23, 2018.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Understandably GET is being highlighted as being generally detrimental as a treatment for ME/CFS.
    But the message on the version of CBT as used in the PACE trial being almost as bad and harmful does not appear to be getting through.

    @Emsho s testimony at the Scottish Parliament about the CBT she had been subjected to clearly surprised/shocked those who heard it.

    So I thought it might be useful to add to this thread any references to this tailor-made version of CBT which is no doubt still being used and still considered perfectly acceptable.

    I'll start with excerpts from the PACE trial therapists manual on CBT (pdf has been uploaded on another thread).

    "
    The essence of CBT is helping the participant to change their interpretation of
    symptoms and associated fear, symptom focussing and avoidance. Participants are
    encouraged to see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology.
    In this way it is anticipated that they will gain more
    control of their lives, as they, and not their symptoms, dictate what they do
    ."

    "
    Theoretical Model
    The model emphasises the importance of the participant’s understanding of their illness
    and their interpretation of symptoms. For example they may interpret symptoms as a
    warning sign to reduce activity. Fear of symptoms and consequent avoidance of activity
    [© Trial Management Group: CBT Therapists Manual Page 13 of 162
    MREC version 2.1 – 08 December 2004 ISRCTN54285094]
    associated with symptoms is central. This model also acknowledges that the
    participant’s beliefs and behaviours are influenced by available information and
    attitudes of families and friends and that these may also need to be addressed
    . The
    model assumes that physiological (fatigue), cognitive (fear of engaging in activity) and
    behavioural responses (avoidance of activity), are linked. Therefore by modifying one
    response it is anticipated that changes occur in the other responses. For example,
    increasing activity
    (behaviour) may gradually reduce the fear (cognitions) that activity
    leads to worsening of symptoms
    ."

    "
    CBT also actively addresses the participant’s
    understanding of their illness which may involve challenging unhelpful beliefs, e.g.,
    about symptoms or activity that may be preventing recovery
    ."

    "
    Planned increases in activity with challenging of understanding of symptoms"

    "
    Cognitive strategies
    These strategies aim to address unhelpful thoughts and beliefs and may involve
    agreeing specific behavioural experiments to test out the validity of the participants’
    existing beliefs.
    "

    "
    Taping of therapy sessions
    This is a necessary part of the trial and participants have all consented to taping of
    sessions. At the beginning of each session it would be useful to remind them that you
    will be taping the session. If participants are unclear of the reasons, you can remind
    them that you are doing this for the purposes of supervision, assessment of
    competence, assessment of therapy differences and other research purposes."


    I know there is no way that these would be made available but it would be very interesting if someone were to listen to them (maybe if there were an inquiry?).

    On page 28:
    DISTINGUISHING BETWEEN APT, CBT AND GET

    For CBT model:
    Works from a deconditioning assumption
    Aims for an improvement in function to occur
    Consider increase symptoms as natural response to increased
    activity.
    Establish a baseline
    Set graded goals"


    In fact having looked down the list the only one's that appears under GET and not CBT (ie all the others are the same) is "Demonstrate / practice exercise".
    and conversely under CBT and not GET
    "Explore unhelpful thoughts, Learn to challenge unhelpful thoughts".

    "
    You will be demonstrating a collaborative style at your first meeting when you
    individualise the CBT model to their illness. By this we mean drawing a model together,
    examining factors they think have been responsible for triggering as well as maintaining
    the illness. Agreeing an agenda for each treatment session, asking for their input in
    making suggestions for their activity programme and evaluating previous sessions will
    help participants to feel valued and included in the treatment process.
    "

    There may be more references but I can't read any more of it at the moment.
     
    Last edited: Jun 23, 2018
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  2. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Here's the rub though: NHS-led CBT of any kind doesn't seem to work. Even the supportive stuff. If it did, why is IAPT showing only a 9.2% recovery rate?

    So do we argue for supportive CBT (which may still be useless) and expend valuable energy explaining the differences between the two kinds, or do we just say no to CBT full-stop?

    Via IAPT, it should be easy enough for anyone to access CBT for mood disorders anyway.
     
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    I suspect that' s why it was not mentioned.
    CBT is the universal panacea that lets boxes be ticked.

     
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  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yes, exactly but should be a separate issue (ie a separate illness to be treated).

    This CFS, PACE version of CBT, is very much based on the deconditioning theory (as is GET) and even if you remove the use of GET as a treatment, it can be used to promote the same potentially harmful 'ignoring symptoms, and pushing through' idea that can be as damaging and IMO should be scrapped.
     
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  5. Tia

    Tia Senior Member (Voting Rights)

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    I had the unhelpful kind of CBT when I first got ill. It made me worse.

    Then two years later I had the supportive kind of CBT from an NHS therapist who knew a lot about pacing. This type was really good and helped me feel more stable. But it wasn't a treatment, just good management. My illness level didn't improve I just learnt how to avoid the crashes and manage it all better. The therapist wasn't working from a deconditioning model and I think that was key. We were simply responding to symptoms and gradually working out what I could and couldn't do and what level of activity made me crash/kept me the most stable.

    I would think it would be a shame to lose the chance for others to get this type of supportive CBT but I agree it's quite a tricky to explain the distinction between types of CBT.

    My second therapist wasn't an ME/CFS specialist, but she was used to working with people with long-term post chemo fatigue and other chronic illnesses. Pacing is helpful in managing many conditions. I don't think that ME needs it's own specific kind of CBT model - we should be able to access the kind of support that is offered to anyone who is learning to live with chronic illness (although does that even exist any more??).
     
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  6. Wonko

    Wonko Senior Member (Voting Rights)

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    From my point of view the problem isn't that pwME don't know how to pace, maybe in the early years they don't but after a while I would imagine everyone notices a pattern and responds accordingly (this is the same thing as ME CBT is trying to counter by telling people to ignore warnings and their own experience)

    The problem is that it is impossible to pace, as needed, because there is no help, and things need to be done, fair enough mountain climbing and marathons can be dropped but people still need to eat, which involves several activities such as planning, shopping (by whatever means), cleaning etc, the rubbish still needs to go out, laundry has to be done even if the frequency drops it still needs doing etc. etc.

    So CBT, maybe for beginners, but for most, a complete waste of resources, resources that could be better used to actually help pwME.

    So yes, IMO it should be scrapped, and GPs should simply tell people to pace, maybe a leaflet or 2, it's not a complicated concept, difficult to implement in practice but not as a concept.
     
  7. chrisb

    chrisb Senior Member (Voting Rights)

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    Some people still need to climb mountains.
     
  8. NelliePledge

    NelliePledge Moderator Staff Member

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  9. Tia

    Tia Senior Member (Voting Rights)

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    I think it's in the early years that it's really important. A lot of damage can be done in that period by continuing to push through and not understanding pacing. It doesn't seem right to expect people to work it out on their own if that takes years and involves making mistakes that could make the illness worse. Making mistakes by pushing too hard early on really can make things much worse (in my experience). Good professional help by an experienced person could prevent that.

    It was quite a complicated concept for me funnily enough, I'd been ill for years and still had properly got the hang of pacing until I had help. I thought I was pacing but in actual fact once we really looked at it I was still doing boom and bust. Just having another pair of eyes to look at my schedule and help me to work out where I could save energy and changes I could make to be more consistent was invaluable. I think that perhaps pushing through was so heavily ingrained in me that I couldn't get out of that without someone helping me to see things differently.

    I agree with your point about pacing being impossible without basic care being in place. I suspect that if all the other care was in place - including understanding GPs, medical care, proper awareness of ME and social care, then pacing could be taught in a couple of sessions. The fact that my illness wasn't acknowledged for so long and then the diagnosis was woolly and incomplete, may have been the reason that I found pacing so difficult. If I'd been told straight out - you have this disease, this is the effect it has and this is how you can manage it best - then I might have found it easier. Perhaps you're right that if everything else was in place a leaflet would suffice, or at least a small number of sessions.
     
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    precisely.

    ?? beginners as in newly diagnosed......encouraged to gradually increase their activity?

    If the CFS/PACE style CBT stays then, as one example, Crawleys FITNET will be justified.
     
  11. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    In response to @Tia

    I don't disagree with your point at all. It's certainly true for new people but this could be dealt with at least as efficiently and for a lot less money by having the relevant info in a flyer or directing people to a charity or a support group. That cuts out the interference from authorities and those who may not be very good at what they do because they have no real understanding of what it's like for pwme.
     
  12. Wonko

    Wonko Senior Member (Voting Rights)

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    @Sly Saint
    Willful misinterpretation, or humour?

    As in other instances I preferenced CBT with M.E. but didn't in this case it can safely be assumed that in this instance I was referring to standard, adaptive/coping/suportive CBT and not PACE CBT.

    .......regarding the observations made by @Tia - it was over 15 years before I was diagnosed, it often, according to my understanding, takes years in the UK to get a diagnosis, by which time people have spent years trying to force themselves to perform to what they, and others, consider an acceptable level, refusing to accept there is a problem to be dealt with until they can't carry on any further, so they toddle off to the doctor, several months later, if they are "lucky", compliant beginner patients are given a diagnosis and offered CBT and GET, rather than competent advice.

    A lot of damage can be done in this time, between acquiring M,E, and diagnosis, until the system is set up to enable this time to be as short as possible then it's going to keep happening, regardless of CBT availability, of any type.

    Without a significant shift in perception, human nature, and the medical establishment, nothing much can be done about the first part, but as soon as a GP thinks ME is a possibility people should be advised to use pacing, simple, cheap, and won't hurt if they don;t have ME. CBT is not necessary but given the numbers of them twiddling their thumbs, maybe, if they can be trained to offer supportive CBT, then they might be helpful for beginner pwME - but the current crop of PACE CBT practitioners are considerably worse than people figuring out things for themselves.

    That's all I was saying - I think.
     
    Last edited: Jun 23, 2018
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    neither; genuine misunderstanding.
    This is the problem generally with using the term CBT.
    This seems to have gone full circle.......back to first post.
     
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  14. Sean

    Sean Senior Member (Voting Rights)

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    Yes. Immediately.
     
  15. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I never had CBT since I was a compliant and willing victim of GET (before I knew better) so I can’t imagine what it’s like.

    I didn’t naturally gravitate to patient groups ...in fact getting involved locally even now fills me with dread. I only joined online forums after the damage was done.

    I don’t think a leaflet would cut it in the early days...the tendency is to still over do it.

    I think CBT should be replaced with face to face help on pacing ...perhaps by Skype appointment ? Some videos endorsed by the NHS might work?

    Obviously brainwashing CBT should be banned as unethical as well as being proven not to work and a waste of money. I’m on the fence about the other sort...but it wouldn’t be something I would volunteer for.

    The brainwashing sort becomes redundant if GET is banned though doesn’t it?
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    I feel like I have more of a problem with manipulative aspects of their CBT approaches than GET. The more I interact with these people, the less comfortable I feel about them managing anyone's cognitions.
     
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  17. Trish

    Trish Moderator Staff Member

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    Here's my take on this:

    Physiotherapists are trained to help people to stay mobile and be able to exercise more.
    Occupational therapists are trained to rehabilitate people and help them become more active.
    Psychotherapists/CBT therapists (both supportive and directive) are trained to help people think and behave differently which includes exercising more because it's 'healthy behaviour'.

    I don't want any of those 3 professions involved in helping pwME learn about pacing. It goes against everything they have trained to do.

    Nurses are trained to look after sick people and help them with whatever treatment a doctor has recommended. Some nurses are trained as specialist nurse practitioners focused on a single condition (diabetes, asthma, Parkinsons' disease etc). The are trained and work under the supervision of consultant doctors in the relevant specialism.

    It seems to me that a properly trained specialist nurse would be the best person to help people learn to pace and to monitor them with regular follow up visits in between consultant visits. They can also advise on medications for symptomatic treatment.
     
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  18. Amw66

    Amw66 Senior Member (Voting Rights)

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    The single paid specialist in Scotland is a specialist nurse. Currently nominated for a national nursing award.
     
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  19. Woolie

    Woolie Senior Member

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    The PACE CBT also incorporates "practical exercises" which involve gradually increasing activity levels.
     
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  20. alktipping

    alktipping Senior Member (Voting Rights)

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    I would not want to be treated by anyone who allows themselves to be brainwashed into believing that millions of people can wake up one day and decide they would rather be suffering from a complex illness to adopt the sick role .instead of getting on with their lives complete with all the ups and downs that life throws at us . Any so called medical professional who would rather believe a complete stranger instead of the patient in front of them is a waste of space as far as I am concerned .
     

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