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CBT/GET potentially harmful to ME/CFS patients

Discussion in 'Latest ME/CFS Research' started by _Kim_, Nov 3, 2009.

  1. Dolphin

    Dolphin Senior Member

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    The normal phrases I use are GET and CBT based on GET.

    "Graded Exercise Therapy" should mean that one can't decrease the amount of activity. Otherwise it is simply an "exercise programme" or a "paced exercise" programme. If a practitioner encourages a patient to go up and down (i.e. decide how much activity if any they will do on any particular day depending on how they feel), I don't think that should be called a Graded Exercise Therapy programme. Any exercise programme should of course be "graded". But Graded Exercise Therapy refers to specific programmes where one is not supposed to decrease based on how one feels (they sometimes now say if you have a virus you can decrease but I think that sometimes with this illness one can have flu-like symptoms but it is not necessarily a new virus).
     
  2. Esther12

    Esther12 Senior Member

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    Once again, I agree with you.

    Indeed, in the very post you quoted from I wrote:

    "Another problem with Good GET, is that it's very easy to confuse it with Bad GET" and... "but then it's almost impossible to DO Good GET properly."

    I feel as if you think you disagree with me about somthing, but I'm not sure what. It looks like you've just gone through some of my past posts to criticise them, and I really don't know why.
     
  3. gracenote

    gracenote All shall be well . . .

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    thank to TomK

    Thanks, TomK, for this. It helps when we are trying to judge the worthiness of a source to have some ideas of what to look for.
     
  4. Dolphin

    Dolphin Senior Member

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    I went through your posts to see where you are coming from. For example, to see if you are a practitioner (I would only be guessing but you see to know a lot about psychological research, not just in the area of ME/CFS).

    When doing this, I saw some things I disagreed with, which nobody else responded to.

    I do not want to be offered just non-pharmacological interventions for the rest of my life. Which is the current situation in the UK, the Netherlands and Belgium. Even when CBT/GET clinics were found to make neglible difference in Belgium in an external audit, they still continue.
     
  5. Dolphin

    Dolphin Senior Member

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    I have a problem with the phrase "good GET"
    (I'm repeating something I wrote editing a post that you would have missed as we posted practically simultaneously):
    Rather than using the phrases, "good GET" and "bad GET", I think we should talk about good and bad exercise regimes. I'm now going to repeat what I say in another post but basically GET in the ME/CFS field should describe programmes which do not generally "allow" you decrease depending on how you feel - using it in other ways is confusing. Phrases like "paced exercise" or "pacing with exercise" seem better for programs that might encourage exercise but they are seen as part of pacing.

    If one is not allowed decrease how much exercise one had planned for a particular day based on how how one feels (which is how I and lots of others define GET), I have difficulty describing any such program as "good GET".
     
  6. Esther12

    Esther12 Senior Member

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    I've read a fair bit about psychology, neurology, consciousness etc, because they're interesting to me in a philisophical and political way. I tend not to read much CFS specific research because I find most of it to be pretty uninteresting.

    I'm not a medical practioner. I'm too ill to work. I want better treatments for CFS too, but I also think that CBT and GET type therapies will be of benefit for some with CFS. When I said "Because of the way GET/CBT is presented, and my own experiences with GET, I have developed an instinctive bias against GET, and can feel myself wanting to discredit papers supportive of GET while being far more accepting of claims opposed to GET" I wasn't trying to smuggle in digs at others. I was being entirely genuine. Maybe this detatched approach to my own beliefs is a reflection of reading too much about psychology, neurology and consciousness!
     
  7. Dolphin

    Dolphin Senior Member

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    Technically speaking, I believe a medical practitioner would only describe doctors or perhaps some other practitioners but not all who work or might like to work in the field. But I will presume you meant a broader definition of the word to mean any sort of practitioner who makes their living offering treatments or interventions for health.
     
  8. Dolphin

    Dolphin Senior Member

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    It's a pity as you seem to have a sharp brain and we need people to challenge some of the papers (some of which you yourself disagree with).
     
  9. Esther12

    Esther12 Senior Member

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    From what I've read, some GET programs recognise that patients will occaisionally need to to reduce their level of activity. This is part of the problem with talking about GET, it really does seem to blur into pacing. It also seems that CFS charities have pushed NICE etc into describing these therapies in a vaguer way, in the hope that it will avoid patients being forced into damaging therapies, but at the cost of making it difficult to be sure of exactly what we're critcising when we talk of GET.

    I quite understand your point that 'Good GET' is more of an abstract ideal than a practically useful program. It seems like this to me too, but I'm not well read enough to say for sure. A number of studies show GET programs to have resulted in long term benefits for some of those with CFS. It often seems that those studies which show GET to be the most effective also have the highest rates of improvement in their control groups, making me slightly suspicous as to how they select their patients. I'm also curious as to the level of support patients are offered too. But I don't feel comfortably entirely dismissing these studies, even though I found GET to be of no use (and possibly some damage) for myself. It's quite possible I just happen to be one of those not helped by GET. It's also quite possible that I was unable to follow a GET program as well as was needed (it seems that the standards of behaviour could be set to impossibly high standards).

    I really don't know. The psychological models proposed for CFS do not fit with my own experiences, and seem to have been largely shown to be false. But I'm still open to the possiblity that psychological and behavioural treatments could be the most effective available. Given the ammout of prejudice and quackery that the medical community has inflicted upon CFS patients, I'm going to want very compelling evidence that this is the case before I again put myself through GET, but I'm still open to the possibilty that this evidence will emerge. I'd quite like to see a CBT therapist, just because I find CBT interesting, and it would be good to talk to someone about it and how it might relate to CFS (although it seems that some think CBT can be carried out by those with minimal training, and this seems rather dangerous to me).

    I'm sure I've left more room for misunderstanding in this post. It really is difficult to talk about CFS and it's proposed therapies concisely. Everthing's is in soft focus. I don't think that we really do disagree on much though.
     
  10. Mithriel

    Mithriel Senior Member

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    I don't want to seem argumentative, these are just my thoughts on the subject.

    CBT is a psychological therapy which is aimed at changing a person's thought processes. It makes sense if someone is thinking "rabbits are frightening" and, as far as I know, its biggest success is with phobias.

    However, I do not believe that people with CFS need to change their thought processes. They may need advice on how to keep their energy levels even, on how to make adaptations to their life styles, claim benefits, but most people have no problem with how they think.

    In fact, I believe most PWCs have a very clear idea of how their illness affects them.

    Someone who is experiencing mental distress, is more likely to benefit from counselling with a sympathetic listener, rather than structured CBT with its homework and diary keeping. The idea of looking at your life, seeing where you need change, has a subtle message of "You are doing it wrong, I know what would work better" and is inherently patronising.

    As for GET, exercise therapy for anything implies that exercise will make things better. Is this really true for CFS? Activity management may have something to be said for it but most PWCs are doing as much as they can and then some more. Overactivity is much, much commoner in CFS than underactivity.

    Information on how best to balance effort so that you can get the best from life without increasing your symptoms would be very valuable, especially if it were done on an individual basis, as everyone's life and priorities are different.

    To increase fitness the body is encouraged to go into oxidative stress so it responds by making more mitochondria, but oxidative stress in PWCs has been shown by various groups to cause the formation of isoprostanes which damage arterial walls causing stiffness. This is not taken into account by those devising exercise schemes.

    Stretching to relieve stiffness, keeping joints mobile and passive exercise in the bedridden would be good things but this isn't what's on offer.

    An exercise program, again implies that we are couch potatoes who are brining our symptoms on ourselves, not that we are very sick with an illness where exercise is the cause of much of our distress. We need gentle and well informed and researched programs to keep us as fit as possible.

    Mithriel
     
  11. Esther12

    Esther12 Senior Member

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    This could be the key point where I differ. I think were all crazy.

    Almost everyone would benefit from altering and clarifying their thought processes. I think we (humans) can easily slip into developing unreasonable and contradictory beliefs, becoming attached to our beliefs and seeing them as parts of our identity rather than just attempts at understanding reality, losing our ability to fairly asses the available evidence in the process.

    I think that these misguided belief systems have played a significant role in the way many medical practitioners have responded to CFS, and have also played a role in the promotion of psychological and exercise treatments. But that doesn't mean CBT and GET do not have their uses.

    For myself, I found GET to be unhelpful (after trying it for years), and the doctors who promoted it to be either dishonest or stupid. Looking back, it's possible they were trying to follow some CBT script, and unable to respond to questions that moved beyond that as they were not properly trained. My own rejection of GET and dismissal of those promoting it has led to a bias developing in which I would find accepting that GET is useful and I just did it wrong, and wasted a decade of my life, to be emotionally upsetting and a challenge to my ego. I'm trying to avoid allowing these potential psychological distortions from affecting my perception of reality. Seeing as others seem to have had similar experiences to me here, I thought it was worth talking openly about my concerns in case others might be in a similar situation. I also think that one of the dangers of the internet is that it allows those with shared experiences and prejudices to gather together and reinforce their own beliefs. That could happen on a forum like this. It could also be that a forum like this is one of the places to discuss CFS which would be the least affected by undue prejudices.

    One of the real hardships with CFS is that many patients do not feel that they can trust their doctors, and a lot of this distrust is justified. I think that some of the talk of CBT and GET being able to treat the biological and neurological causes of CFS is a dishonest attempt to hide psychological explanations from patients seen as resistant to any sort of introspection. I also think that some of it might be true. I really dont know, but Im trying to keep an open mind in spite of my own instinctive beliefs.

    It may be that Im a natural contrarian, and being on a forum where so many share my own beliefs leads to me being more critical of them, and keener to find potential problems with them. In most other situations I would be emphasising the problems with CBT and GET for CFS, and certainly of the way so little funding has been made for other areas of research. If everyone on the forum only talks of the problems with CBT and GET though, it can create a misleading impression.

    I think its worth making clear that there are a range of different approaches to CBT and GET of varying worth, and that they may be helpful for some CFS patients. For myself, I try to stay open to the possibility that GET could be useful for me, and I just failed to apply it properly previously. If more compelling evidence in support of GET emerges, I may try it again.

    ps: Really not looking to be argumentative either. I don't really have the energy needed to write properly about this, and don't want to sound as if I'm attacking others here. It is a topic I find difficult to talk and think clearly about, both because of the lack of clear evidence and my own emotional involvement.
     
  12. meandthecat

    meandthecat

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    i'm with Mithriel and I wanna be well on this. The irony is that I would welcome some help to address psychological problems, I doubt it would help with CFS symptoms but it sure would be useful. Funny how that's not on offer. lol
     
  13. Kati

    Kati Patient in training

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    So... I have a question here...

    My disability insurance company wants me to start rehab since I had my functional assessment and the physio said that I might benefit from a rehab program. 6 weeks, 3 days a week, 1.5 hours each time, then return to work right after that.

    What do you say to that?
    No and you'll look as not interested to return to work and in their black book- maybe the'll send you for a psych assessment
    Yes and you'll deteriorate even more- or look unmotivated and the physio reports you and then you get a psych consult

    It is to note that I have not yet seen my specialist (rheumy) since the begining of the illness- -
     
  14. Esther12

    Esther12 Senior Member

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    In a lot of ways, it is something of a first year philosophy dilemma... but with the added problem of being seriously ill, and a lot of medical professionals thinking this illness has a psychological basis.

    More generally, I believe people have a responsibility to think seriously about their beliefs. I think we'd be in a much better position with CFS if medical professionals had taken more time to analyse the workings of their own minds and tried to avoid allowing any of their own instinctive beliefs and prejudices distort their interpretation of the available evidence. I can be hard on myself in this way, but I'm hard on others too. I don't think my ideas are contradictory though, and if they are I'd see that as a sign I've thought about them too little, not too much.

    You're right that accusations of madness tend to be aimed at those thought of as weak and dependant, whereas the madness of the powerful is simply imposed upon others. I also understand that taking such a sceptical view of our own beliefs can be a strain, and is perhaps not sensible for those who are already seriously ill, especially if there is a lack of compelling evidence that they, as an individual, do have any psychological problems.

    Given the ambiguous evidence around CBT and GET, and the warped view of CFS which gave rise to them, I understand why many people would be so hostile towards them. I can feel pretty hostile myself. But I also think that they are likely to be of use for some people – possibly myself.

    I’m slightly surprised to find myself defending GET and CBT, but I think it stems from my own deep uncertainties as to the cause and best treatment for CFS. I’m critical of those who argue CBT and GET can successfully cure all those with CFS, and critical of those who claim CBT and GET will be of no use to anyone with CFS. I just don’t think the evidence is compelling enough either way, and we need to try to acknowledge that uncertainty even if it goes against our own instinctive beliefs. I’m quite aware that my own instinctive beliefs are hostile towards GET and CBT, perhaps in a way that limits my ability to reasonably asses the evidence supportive of these therapies.

    @ kati: I know that insurance companies can use CBT and GET as a way of abusing CFS patients, setting arbitrary targets without even consulting medical professionals. I certainly don’t want to claim that the way people with CFS are treated is acceptable, or downplay the real hardships which people like you are facing. I think it’s incredibly difficult to live with CFS and decide how it’s best to behave.



    Thanks to anyone who read or replied to my posts. I think I’ve found it helpful to write out my thoughts on this. Sorry if they’re a bit rambling. Hopefully this XMRV research will lead on to something more solid, and we’ll be able to leave the ‘How do we know what we know?’ questions to the philosophers.
     
  15. Mithriel

    Mithriel Senior Member

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    The proponents of CBT often cite the fact that it is used in cancer and diabetes patients. In fact Trudy Chalder and others have often had a laugh with interviewers about they way PWCs resist these things when more people with other diseases accept them happily.

    It's used as proof that we are just biased or bigoted and are like children refusing our medicine.

    BUT when Ellen Gouldsmitt of the British Psychological Society contacted the national groups for diabetes and cancer they had never heard of CBT being used for these diseases. They went and had a look for her but couldn't really find anything. It certainly wasn't something they knew about or felt relevant.

    And that is the point CBT is irrelevant to the treatment of a physical disease. Why should we have to consider it?

    The studies meant to "prove" its effectiveness, I think there were only about five, were badly designed, used a poorly defined, very small patient group, didn't get a very good result and even the authors admitted that any positive result was gone in eighteen months.

    Peter White now says that the therapists idea of a cure and that of the patients may be different :confused:

    Put your mind at rest Esther there is NO evidence of CBT making a person with CFS better. This is simple fact, not an instinctive belief. If it was AZT and it was getting these very poor results do you think the insurance companies would be paying for it?

    The people who push CBT have had to manipulate the science, the definitions of the disease and statistics to get a positive result. If a proper study was done which showed a positive benefit I would be more than willing to try it and encourage others to do it.

    http://www.meactionuk.org.uk/index.html

    has a large number of fully referenced papers which explain the background to these things very well.

    Mithriel
     
  16. Min

    Min Senior Member

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    This has just been posted on Co-cure by Colin Barton of Sussex and Kent ME/CFS Society. It completely ignores the recent biomedical research results from the WPI and Dr Kerr etc. and suggests that we can recover by pacing and increasing activity.

    I don't know what illness the Society & Action for ME are talking about, some sort of vague tiredness perhaps, but it certainly is not neurological M.E. as defined by the World Health Organisation.



    "Pacing Helps ME

    A recent survey run by the Sussex & Kent ME/CFS Society working with the
    Brighton & Sussex medical School amongst people in the South East counties
    affected by the Chronic Fatigue Syndrome known as ME has clearly found that
    Pacing can help most with the debilitating illness. 440 completed
    questionnaires have been analyzed showing that a massive 94% of respondents
    said that they found the management approach of Pacing to be reasonably or
    very helpful.

    Pacing is all about balancing activity and rest to bring about improvements
    in the way the patient feels. The word 'activity' is used in a broad sense,
    to include mental and emotional activity, as well as the more obvious
    physical sort. Taking a balanced, steady approach to activity counteracts
    the common tendency to overdo things. It avoids the inevitable ill effects
    that follow. Pacing gives people awareness of their own limitations which
    enables them to plan in a positive way how to use energy, maximizing what
    they can do with it. Over time, when the condition stabilizes, patients can
    very gradually increase activities to work towards recovery.




    Although ME/CFS can be a long term seriously disabling illness for many
    people there is much that can be done to help patients make improvements as
    our survey clearly shows.



    National UK charity Action for ME have a booklet available that explains
    what Pacing is and how to manage the illness working towards recovery.

    www.measussex.org.uk

    www.afme.org.uk "
     
  17. Mithriel

    Mithriel Senior Member

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    I noticed when I read their results that they had no box to tick for "made worse" only "didn't help".

    So that is good scientific work then :(

    Wonder of it will be used as "evidence" that exercise doesn't make us worse and we only think it does because of exercise phobia.

    Mithriel
     
  18. Dolphin

    Dolphin Senior Member

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    Here's the Kathy Fulcher and Peter White protocol for GET for anybody interested:

     
  19. duendeni

    duendeni Guest

    I approach this from the perpective of a patient who has been made significantly worse by GET. My doctors had no previous experience of M.E. and I was referred to the physiotherapy department in my local hospital after having been bedridden for 6 months and experiencing a little remission in my symptoms (I had experienced a massive relapse following my A level examinations, prior to which I had been pushing myself to no end).

    I feel ignorance with regard to the nature of m.e. within the medical profession - particularly the belief that the illness "is all in the mind" or simply doesn't exist - in conjunction with procedures like GET and CBT can be damaging. It is when these factors are combined that practitioners allow for a faulty application of GET and CBT that can be harmful. As essentially a psychological treatment protocol, the use of CBT and GET in themselves as the primary treatment approach for M.E/CFS can further perpetuate the myth that M.E. is simply something that once can shake off by being more active and not paying heed to the symptoms, which, in the mainstream view of the medical profession, are "certainly imagined" (i.e. we need to get out of the "malingering/hypochondriac " mindset). As we all know this is certainly not the case. I, personally, tried so hard for so many months to carry on with my physical exercises because I wanted so badly to be well, to be functioning. I was told I could control my illness by doing so - I wanted to believe this. I thus ignored the fact that I felt horrendously ill (I looked horrendously ill, too, which the practitionsers would have picked up on had they been on the alert, or had they kept an open mind) to absolutely no avail. I am still in a wheelchair, three years later.

    Having said that to say that CBT/GET is of absolutely no benefit to M.E/CFS is to demonstrate a bias, a prejudice. All illnesses have a psychological component and M.E. is no exception. Better illness management and treatment of the underlying emotional impetuses for getting into the "push, crash mindset" (do you rate your self worth in terms of your personal achievements? do you take on more than you can handle in effort to "prove yourself"/your personal worth?) can certainly be helpful. How many of us can actually say that we feel relaxed, that we have peace of mind? How many of us have failed to listen to our bodies craving for rest at crucial moments (before and after illness)? We could say this is a natural response to being ill. That may be the case, but that does not mean that the emotional component has no relevance in perpetuating the condition. Alleviating anxiety and getting out of the vicious cycle of stress/illness/push/crash is undoubtedly a valuable treatment objective.

    The problem is that so many people with M.E. are so physically weak (as they have been pushing too much for far too long holding down jobs, caring for children ect), that exercise (or too much of it) perpetuates this cycle rather than breaks it. Doctors who prescribe GET for their patients and receive negative outcomes can interpret this as hysteria on the part of the patient and cite the use of CBT as a primary treatment protocol for M.E in evidence of their thesis. Failure to take in account the biological abnormalities in M.E and adopt an integrative treatment protocol is what leads to problems. In certain stages of the illness, graded exercise - understood as incremental, paced exercise based on subjective symptoms - can be beneficial. But not in all, not, indeed, in most.

    It is by using CBT/GET as a panacea or one-size fits all approach that the medical profession does harm.

    Thats my take.
     
  20. Esther12

    Esther12 Senior Member

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    I agree with a lot of this.

    I actually think the version of GET tomk posted looks like it could be quite sensible - the sections immediatly after the parts bolded are vital though! I think that some CFS patients can see CBT and GET in the same way that doctors can, as an extension of a rather prejudiced view of CFS. Given many of the people promoting CET and CBT for CFS, this is not entirely unreasonable, and I think the history of the way CFS has been treated does justify additional scepticism towards claims made about GET and CBT - but I don't think they should be universally dismissed.

    The version of GET posted seems to say that levels of exercise should not be continually risen regardless of how the patient feels. It also says that discomfort should only be tolerated for one week... but what happens then?

    I think that the way GET and CBT are promoted for CFS is dangerous and misleading. I've not found GET to be of any use (although it seems almost impossbile to know if you're doing it right). I think the emphasis on CBT and GET for anyone suffering from chronic fatigue, at the expesne of trying to find and help physical causes for their fatigue will certainly have led to the abuse of patients with serious physical problems... but I also think CBT and GET could be useful for some. And that it would be sensible for most people with CFS to try some version of a GET program like the one detailed above. I expect most of us will have pushed ourselves harder than that GET program seems to require, just as part of our everyday lives, and the doing so in a more structured manner to see if highly regulated increases in exertion might be helpful is probably less dangerous than a lot of other possible treatments for CBT.

    I also think that GET protocol is so loosley worded as to be virtually meaningless. A 'certain amount of discomfort'... what does that mean? When promoters of GET complain about poor results in the field being due to people misapplying their techniques, I think they need to accept some responsibilty for their inability to communicate clearly. In many ways, it does seem more like shamanism than medicine, but maybe that's all we have at the moment.

    Wesseley, White, Chalders etc, have been using these treatments for a long time, sometimes with seriously ill patients. Surely if they made every single one of them worse, they'd have stopped by now? I think it's likely that their view of CFS is disotorted by their own prejudices but for GET to be universally damaging (even for the most seriously ill), these specialists would have to be totally insane or totally evil. Maybe I'm being niave, but I don't think that is likely.
     

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