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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. duendeni

    duendeni Guest

    Hey Esther, I want to just say that your illness experience shouldn't be degeligimised here just because you disagree with people on certain points. I think the whole "psychological" thing is a touchy subject for some, because, as a community, we have been abused by the medical/psychiatric profession in such a way. Its healthy to question things as you do and to try and maintain some neutrality in evaluation of certain procedures.
     
  2. Dolphin

    Dolphin Senior Member

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    That makes more sense.

    In your previous post, you said:
    So in fact you appear to be agreeing with me that the authors have not expressed well the problems that can face patients when they try to increase their activity levels. It is not simply a little fatigue that stops patients increasing activity.
     
  3. Dolphin

    Dolphin Senior Member

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    I challenged her on the suggestion that more activity would bring on just a bit more fatigue. With challenging she agreed that more activity would bring on more than just a bit of fatigue. So it is detailed questioning that brought clarity on the issue. That is not delegitimising her illness.

    And if she had a different condition to me, that would be relevant as different treatments could work. And we should really have separate forums for people with different conditions.
     
  4. Dolphin

    Dolphin Senior Member

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    I was challenging what they wrote, through you. You agreed that you would get more than just a little fatigue if you tried to increase your activity levels. So proving that that their description did not adequately describe the symptoms some people face or why people don't keep increasing their activity levels.
     
  5. Esther12

    Esther12 Senior Member

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    I certainly think we all have a responsibility to challenge the false and exagerated claims made about CBT, GET and CFS. I'm grateful to those who put so much time and effort into doing so. But I think part of this responsibilty also requires us to speak out when we see people being too broadly dismissive of CBT and GET.
     
  6. Dolphin

    Dolphin Senior Member

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    But is that enough? You go up to a certain level of activity and you start getting a lot more symptoms. I think it's better to reduce to a level where you don't have symptoms. I think that is a safer option.

    Also how realistic is to suggest that people won't increase when they start feeling symptoms. In reality, most people don't put the exact same burden on their bodies every day through mental, physical or emotional exertion as well as other demands on their bodies e.g. infections they are exposed to, menstrual cycle, changes in weather, etc. About the only people who might be able to approach doing that are hermits who live in a bubble and don't communicate with others.

    We also know from exercise studies that when people with ME do exercise the next day, they can't do nearly as much as the first day. While the variation in the general population from one day to the next is not cumulative like this.

    As Ellen Goudsmit PhD has said before, the important issues regarding the differences with regard to GET and pacing are with regard to a ceiling of activity. GET proponents and models don't mention there is a ceiling of activity that many people will not be able to go past in the course of a GET program. And it's not simply because patients are wimps and scared of a little fatigue. Or misinterpret the symptoms of their bodies.
     
  7. Dolphin

    Dolphin Senior Member

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    And does the latter interfere with your ability to do the former? e.g. you won't write in to challenge CBT and GET because you think it might would be misinterpreted in some way. If everyone does this, we are left with the current situation.
     
  8. Esther12

    Esther12 Senior Member

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    I don't think anyone on an internet forum could deligitimise me! I quite understand that some people will be touchy about these matters, and I've been trying to handle them delicately. Thanks.


    I don't see any contradiction between those two posts. I do not expect I would get such extreme a fatigue reaction from a cautiously implemented GET program, but I also think it would probably bring a worsening of fatigue without bringing any benefits.

    Possibly I wasn't clear enough when talking of 'worsening of symptoms'. You used this as distinct from merely an increase in fatigue, so I'd assumed you meant something like a 'bust', whereas perhaps you see what I would describe as an increase in fatigue (which for me, includes muscle pain, concentration etc) as requiring a broader term like 'worsening of symptoms'.

    From what you've written, it seems like we're still not clear. I do not see 'fatigue' as being only a minor problem. I consider myself to be pretty severely ill because of fatigue. The different aspects of fatigue can be dissected and described, but I don't see them as necessarily distinct. Muscle pain, trouble concentrating, etc, etc, all fit within my conception of what 'fatigue' is.

    A bit more activity brings on a bit more fatigue.

    Hold on... the protocol was not predicting responses in that section, it was offering guidance on how to respond to particular responses. The protocol was also so loose that if followed cautiously, it should not lead to people having anything like the sort of extreme fatigue responses I stupidly pushed myself to. I think you're interpreting the protocol in its most damaging manner - and the fact that it can be interpreted in this way is indeed a problem, but it can also be interpreted in a far more cautious and (I think) sensible manner.

    You keep doing things like adding in the A LOT I capitalised. It makes things sound worse, but it means we're often talking about different things. We can be imagining very different circumstances being described by the same words.

    I quite agree with your middle paragraph about the difficult of actually applying GET.

    I think the most common conceptions of GET are seriously flawed. I'm sceptical as to the use of psychological and behavioural treatments for CFS. I've not said otherwise. I just think some people's attacks on CBT and GET are too broad and can be exaggerated by the personal experiences we've had with them, and a desire to reject the prejudices they can feed.

    With everything, it can be difficult to communicate clearly, but I don't think there's any particular tension here. I certainly don't think there's any particular reason to avoid saying what I think about CBT and GET just because it's easy to be misinterpreted. I suppose I might be more cautious because I've not taken the time to be sufficiently well informed, but I think you can be honest about your ignorance and still express your opinions based upon what you do know, and this can be of some use. I'm always hopeful that someone better informed and brighter than myself will come along and express my oppinions for me though (especially today - I feel rather foolish for typing away in this thread).
     
  9. Dolphin

    Dolphin Senior Member

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    Yes, I do think fatigue doesn't cover muscle pain and concentration. It is inexact to say that they might.

    Some proponents of GET only use fatigue as outcome measures in their studies.

    It is an important issue. If we want to be exact, we don't say that fatigue also covers other symptoms.

    You also mentioned other symptoms in your post like nausea.
     
  10. Esther12

    Esther12 Senior Member

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    Before I was ill, when I would stay up all night or tire myself out in other ways, it would result in fatigue. This would manifest in symptoms like muscle pain, difficulty concentrating, etc. What would it feel like to be fatigued, if it did not also include these symptoms? I felt that my nausea was also just a result of extreme fatigue, rather than a distinct symptom.
     
  11. gracenote

    gracenote All shall be well . . .

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    a short summary

    I just want to say to tomk, Esther12 and duendeni and others on this thread who have been grappling with this:

    I think you are all bringing up excellent points and I have been very interested in following this dialog. I would love it, when you all have this sorted out, :) for you to come up with a short summary regarding CB/GET for people with ME/CFS to read. Thanks for hanging in there with each other and I hope you're not wearing yourselves out!
     
  12. Jenny

    Jenny Senior Member

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    Fatigue

    Sorry to interrupt this interesting debate.

    Surely fatigue is to do with energy, and quite distinct from nausea, muscle pain and problems with concentration.

    I only have 'fatigue' in my better periods - I would describe this as a weary, heavy feeling. When I am at my worst I get very severe weakness and complete exhaustion, along with muscle pain and nausea (and lots of other fluey and neurological symptoms) but I rarely have severe cognitive problems. None of these can be described as 'fatigue'. That's why the term CFS is nonsense for many of us.

    Jenny
     
  13. Esther12

    Esther12 Senior Member

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    Honestly, I doubt we're going to come to a useful conclusion. I'm really unsure about GET and CBT myself. I think it might be pure quackery. It might be useful for a section of those with CFS, but difficult to get right. It might be useful for almost everyone with CFS, but almost impossbile for most to get right.

    I do think it's worth further research, but it pisses me off that so much of the research for GET and CBT seems poorly designed and unable to answer the questions I have about it. The fact that many of those involved with it have pretty dubious histories with CFS makes it all the more difficult. That I may be emotionally resistant to accepting that a psychological or behavioural treatment will be of use makes it near impossible to know what's best.

    Wouldn't it be great if we could just trust the medical community to look dispassionatly at the evidence for us? Isn't how this is supposed to work?

    I sometimes get flu-ey, viral type symptoms - swollen glands etc, which seem truly distinct from the normal concept of fatigue.

    Severe weakness, complete exhaustion, muscle pain, nausea, cognitive problems... I would consider all of these to be a part of 'fatigue'. They could be induced in a healthy person through prolonged over-exertion and sleep deprivation.

    I think that your definition of 'fatigue' (a weary, heavy feeling) is just resticted to a milder form of mine. Everyone uses language differently, but I think muscle pain and cognitive difficulties are generally seen as a part of fatigue. Nausea is more extreme, but I don't think 'fatigue' is necessarily a minor ailment.

    Is there a international divide here? I'm British - I see you're in London. Does anyone know if the term has different meanings elsewhere?



    I'm pleased this thread might have been of some interest to others. I'm not sure we'll really be able to progress much further though, other than perhaps clearing up some semantic issues which caused confusion.
     
  14. Jenny

    Jenny Senior Member

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    I guess we'll have to agree to differ, Ester1!.

    I would say that symptoms to do with energy, like fatigue, can be clearly distinguished from other symptoms like pain and nausea. I know a lot of people with ME who go through periods of muscle and joint pain, for example, without having fatigue, myself included.
     
  15. Esther12

    Esther12 Senior Member

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    Ahhh... I see. Certainly you can have muscle and joint pain without it being caused by fatigue. But I also think that you can have them as elements of fatigue rather than distinct symptoms. For myself, these symptoms always seem to stem from my fatigue.

    I had been assuming that for those with CFS such symptoms would be a part of 'fatigue', but I see that this need not be the case. Maybe I was misled by the name for the reason that others resent it.

    Although... if someone had gone for a run, and the next day their muscles ached, but they felt no other symptoms of fatigue, would that still be fatigue? I think it might. I guess the muscle pain of fatigue without the other symptoms could be like fibromyalgia in relation to CFS - I'd not thought of it like that before. It can be difficult to communicate clearly about these things, and I'm sorry if I end up misleading anyone.
     
  16. _Kim_

    _Kim_ Guest

    I pulled out the very heavy copy of Dorland's Illustrated Medical Dictionary (2007).

    Looks like Dorland's definition is in agreement with Jenny's understanding of fatigue.
     
  17. Mithriel

    Mithriel Senior Member

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    The public see fatigue as being tired. As long as we talk about our illness as being fatigue they will not see why we can't just pull our selves together and get on with things the way they do. Many PWCs are suffering because of this, being treated dismissively by famlily, friends, employers, the benefits system and the medical system.

    We, at the very least should know not to say fatigue when we mean nausea, muscle pain swollen glands and so on. These are things that are not considered as fatigue by anyone else.

    Esther you are incredibly naive if you think patients not getting better will change a career enhancing path of our medical "experts". They are getting a lot out of it so it matters not a jot if we aren't having our sufferieng releived at all.

    Most disease does NOT have a psychological component. Plants get diseases, even bacteria get diseases. The idea that all illness has a psychological component is new age twaddle.

    My friend had cancer. She got her breasts removed, got chemotherapy has got over it. No CBT, just physical treatment for a physical problem.

    I do not think there is any place for CBT or GET in ME and I strongly resent this being cast as some kind of bigotry against psychology. I am against it because it is not appropriate. If you need counselling to bring order to your life or cope with the losses that illness entails, go for it, but for the day to day physical relief of our suffering we do not need any of it.

    My friends with MS do not need or get it, my MIL with rheumatoid arthritis does not need or get it so why should I? If I broke my hip would CBT mend it?

    We need proper research into the physical problems that are making our bodies not work so that they can be fixed.

    If we don't demand proper treatment no one else is going to get it for us.

    Mithriel
     
  18. Esther12

    Esther12 Senior Member

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    fatigue: a state of increased discomfort and decreased efficiency resulting from prolonged or excessive exertion; loss of power or capacity to respond to stimulation.

    Wouldn't this include muscle pain and cognitive difficulties?

    As I said: "Severe weakness, complete exhaustion, muscle pain, nausea, cognitive problems... I would consider all of these to be a part of 'fatigue'. They could be induced in a healthy person through prolonged over-exertion and sleep deprivation."

    I see symptoms that can be induced though over-exertion and sleep deprivation as symptoms that can be included in a definition of 'fatigue'.

    If others want to avoid describing these symptoms as 'fatigue' for propaganda reasons, that's absolutely fine. I understand that people can be unfarily dismissive of CFS and may need to be manipulated into behaving fairly. I tend not to use language in this way and that decision may well be to my detriment, but I don't think that twisting my use of language to fit with the preconceptions of others is a sensible thing for me to do at the moment. As I said, we all use language differently, and that's fine.
     
  19. Dolphin

    Dolphin Senior Member

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    Personally, I am not particularly interested in a picking out what you say, Esther. You restrain yourself well in debates so it is easier to an extent discussing things with you than some.

    What I am interested in is accuracy within the medical profession, research, etc and getting to the heart of the issue. I do not think that describing the symptoms brought on by exercise in M.E. as "fatigue" is adequate (as the advice suggested). I have read studies which measure different symptoms under different symptom headings.
     
  20. Alice Band

    Alice Band PWME - ME by Ramsay

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    I guess one of the problems here is that some people have been through graded exercise programs and for others it's purely an abstract or interesting argument.

    There's nothing like having experienced a graded exercise program and then never recovering from it to give, one a good insight into how damage, can be caused.

    Rather like dissecting a war or other serious event when for some it's at a distance and for others it's been a serious life changing event. For those who have had a life changing serious event it's not unreasonable to expect for this to be treated seriously with the right language and the right degree of respect towards their suffering.

    This forum is for people with CFS. Surveys and patient testimony contains bad graded exercise experience so it does pay to be respectful to that experience.
     

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