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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. Esther12

    Esther12 Senior Member

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    I think people will have got the message that others think CBT and GET are inherently evil and should not even be considered by anyone with CFS. So what?

    I'm sure that there are people with CFS who do not have an especially damaged mitochondria, immune system or neurological disfunction. I'd have thought not all the patients on this board do either.
  2. Dolphin

    Dolphin Senior Member

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    Does Anaemia?
  3. Dolphin

    Dolphin Senior Member

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    The GET program says one can't reduce for a week. So say you get up to a 20 minute walk a day. Then you feel bad. You are supposed to keep up the 20 minute daily walk for a week when feeling bad. I think that is a recipe for a relapse.

    In reality, what most likely happens is that people don't keep up their exercise programs during the week.
  4. Dolphin

    Dolphin Senior Member

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    But you need to remember that the terms they tend to use is "chronic fatigue" and "chronic fatigue syndrome" (they switch from one to the other). Lots of people have chronic fatigue - doesn't mean it's M.E. Many people with fatigue problems of one sort or another may be able to exercise more and it might help depressive symptoms in people who don't have M.E.
  5. Dolphin

    Dolphin Senior Member

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    And the drive of science should be to find how to spot using science who might benefit and who might not and until one does, not to recommend treatments that might damage some. That's what happens with drugs - why should the safety standards be lower for GET.

    So what we need to have is more biomedical research to understand the illness. Then we will be better able to work out the activity programs that might be suitable or might not be suitable for any one individual. At the moment, there have been trials in the UK (PACE and FINE) which cost over 5 million of taxpayers money combined but which aren't using biological predictors. At the moment, there is denial (not necessarily by you) of the problem that GET programs are not suitable for some people.
  6. Esther12

    Esther12 Senior Member

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    I think so much depends on interpretation (which is a big problem I have with GET).

    One interpretation: If you're able to do 18 minutes walking a day without this leading to 'complaints of fatigue' (!?), and then increase to 20 minutes - which does cause complaints of fatigue, then 20 minutes should be maintained for one week, to see if fitness improves and fatigue decreases. I don't think that sounds that risky, although I don't know how it would have ever applied to my own experiences of CFS.

    I'm always tired. (Well - I can remember having a moment of not feeling tired four years ago, and briefly thinking I might be getting better). I really don't know if following GET would require me to drastically decrease my levels of exertion, or gradually increase them. When I spoke to a GET advisor, they seemed to rather resent the question, and implication that they should be able to provide an answer.

    I see CFS as meaning little more than 'you're really tired and we don't know why'. This is probably a reflection of the fact that by the time I fell ill, this is what CFS had come to mean.

    I was having trouble phrasing my reply to this when I saw you'd posted again:

    This is pretty much what I was trying to find a way to say. You saved the day, as I feel like my mind's just gone especially hazey, and I need to stop typing.
  7. Dolphin

    Dolphin Senior Member

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    Well I don't know what illness you have but certainly with the illness I have, if I have a bad flare up of symptoms, if I try keeping at a level of activity that I was at before the flare up of symptoms, it will just make the flare up much worse. And last much longer. And in fact, the total amount of activity over the subsequent period would likely decrease. So that's why I call it risky. Especially because after previous relapses I have ended up at a lower level with a lower ceiling. So that's why I think it can be said to be risky - there is a risk that one will be left worse.

    Lots of people with ME I know are similar.

    Maybe you have a different condition.

    The authors often talk about "complaints of fatigue" and "fatigue symptoms" so I think an increase in fatigue needs to be read as an increase in symptoms.

    But you're free to do the program now if you like. Unlike drugs, we don't need to access a prescription before accessing an exercise program. You say you don't think it's risky so I don't know what is stopping you.
  8. duendeni

    duendeni Guest

    Maybe I should rephrase my statement to any long term, chronically disabling illness. But actually, I do think it is very possible that some anaemia has a psychological component/impetus. For instance, why would a person be iorn deficient? Because they are getting a good diet? Unlikely. I actually have an anorexic friend who has suffered with anaemia.

    Illness does not arise in a vaccum. It is typically the result of many factors (social, psychological, environmental, genetic). I know of a skitzophrenic woman who substantially improved her condition, not by taking medication or undergoing psychotherapy, but by exercising and eating oily fish.

    Biological or organic illness is itself an emotional trauma, just as mental illness is a physiological trauma. There is a feedback loop here and you will do well to recognise it. Does being ill make you happy? As I heard someone say recently, the biochemistry of happiness is completely different to the biochemistry of despair. I'm not advocating CBT as a panacea,far from it. I'm just saying it may not be as simple as treat virus with drugs = resolve illness or treat depression with psychotherapy therapy = resolve illness.
  9. Dolphin

    Dolphin Senior Member

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    But as you say, some people with anaemia will just recover with biological treatment alone.
  10. Dolphin

    Dolphin Senior Member

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    It may not be for everyone. But it could be at least for some of us.
    More research on the aetiology and pathophysiology might give us some answers.

    The (UK) Medical Research Council (MRC) research strategy influenced by claims that rehabilitiation approaches can work said that studying causes wasn't necessary. There have basically been no research grants approved by the MRC to look at the aetiology and pathophysiology.

    Maybe some people don't care that the MRC isn't funding research into the aetiology and pathophysiology. And that research progress in general is painfully slow. I'd like research progress to be quicker.
  11. Dolphin

    Dolphin Senior Member

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    Perhaps with treatment, ME wouldn't be a chronic disabling illness for many. So they wouldn't necessarily need psychological supports or treatments.
  12. Esther12

    Esther12 Senior Member

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    I've found that my fatigue tends not to vary as much as some people here seem to describe. I don't seem to have the dramatic booms and busts which seem to be a part of many people's CFS. I'm not sure which I'd prefer - mine is more predictable, but the occaisional 'boom' would be nice.

    I did not assume that 'complaints of fatigue' necessarily meant a worsening of symptoms. I thought it was more likely to refer to the slight increase in exertion leading to a worsening of fatigue. As I said, much depends upon intrepretation though.

    I didn't say there was no risk to GET. I said that this interpretation of GET didn't sound that risky - certainly far less risky than other interpretations, and other programs people here seem to have had reccommended. Less of a risk than AZT too!

    I've also said I have not found GET to be useful - otherwise I would be pursuing it.

    Surely everyone here wants CFS research to progress faster.
  13. Dolphin

    Dolphin Senior Member

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    But if it is seen as a condition that can be treated with non-pharmacological treatments, there will be less investment in biomedical research. Certainly drug companies will be less inclined to invest money.
  14. Dolphin

    Dolphin Senior Member

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    "Boom" and "bust" are pejorative terms that are also a bit inexact.

    Are you saying if you kept increasing your activity levels, you wouldn't get an increase of symptoms (not just fatigue).
    I'm still not sure then why you don't increase your activity levels as per this program.
  15. Dolphin

    Dolphin Senior Member

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    Well if all you get is a bit more fatigue when you increase your activity levels above a certain point, but no other symptoms, I'm not sure why you don't do.

    Just because they say that fatigue is the only symptom patients might face, doesn't mean that's a fact in M.E.
  16. Dolphin

    Dolphin Senior Member

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    Having less of a risk than AZT is a strawman argument. That's not the only possible drug treatment that could ever possibly be offered to us.

    Also just because they describe it in such a way, doesn't mean that's the reality. I think people with M.E. would find if they keep increasing their activity levels, that they would face more symptoms than a little fatigue.

    But as I say, you are free to do it.

    But if you don't do it, I think perhaps the reason you won't is because you do think there is a risk of some sort. As you say, the treatment doesn't involve drugs so why won't you do it if there is there isn't any significant risk associated with it?

    You say you look at issues in the abstract. But that may not be the best way to look at them. You can get another view of them by looking at your own situation. So I think it is a reasonable question to ask you why you won't do it. You might then realise that you do think there is a risk and you are being inaccurate in your claims about the program.

    That's what patients can bring to discussion. They can see flaws that others may not. It is very seductive to suggest we can all just keep increasing our activity levels back to normal. And healthy people can be taken in by this.

    To be honest, if you think all patients will get is a little fatigue and no other symptoms if they keep increasing their activity levels, I have to wonder if you have M.E.
  17. duendeni

    duendeni Guest

    Yes we agree on that. But seen as there are no curatative drug based treatment programmes available and seen as the pathophysiology in CFS/M.E has not been clearly identified (is there a single pathophysiological mechanism at work in all cases, I wonder) I think its best to make the best of what is currently available while campaigning for more research.

    Most illnesses that are chronically disabling (aids, m.s. ect) are not entirely resolved through drug treatment. If this xmrv thing turns out to be a major player in m.e., it looks rather likely that this will be the case for us, too.

    I actually think all people with chronically disabling health conditions would benefit from the offer of some psychological therapies (not enforced therapy, granted). There is such a split in our society between body and mind - a belief that is the direct descedent of cartesian dualism. This kind of thinking can cause harm, medical abuse, inhibit recovery - for instance, there's this stigma with mental illness that it's somehow your fault, and I know of middle aged men that have never admitted to suffering from depression to their friends and wives! That's not right. People seem to think that illness has to be either organic or functional, including the mainstream medical profession (we've all heard the "i can't find what's wrong with your body, therefore it must be in your head" scpeel) when in reality most illnesses fall somewhere in the gray area between the two, even if the illness is apparently clear-cut. Most people with cancer relapse within 10 years of recovery. What percentage of those relapse because they have fallen in to old lifestyle habits? Healing emotionally is a big precussor to healing physically and vice versa. Plus, anxiety reduction has no side-effects!
  18. Esther12

    Esther12 Senior Member

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    I'm not sure if you're saying that we should act as if CBT and GET are even worse than they are, in the hope of attracting more funding, or just saying that the emphasis on CBT and GET research has stunted other potentially more useful avenues. I've not seen anyone here disagree with the latter.

    If I increase my activity levels, my fatigue gets gradually worse. Suffering more muscle pain, trouble with concentration, etc. It just all gets progressively worse in relation to the ammount of activity. When I was first ill and pushing away, I was vomiting, minor halucinations, etc. I never got a sudden onset of a 'bust' though (or whatever term you might prefer). I just got progressively worse until I took the time to rest up more, and then my level of fatigue would gradually reduce.

    I don't see why it would be difficult to understand why I would not continue to increase my acitivity levels, seeing as it seemed to bring no beneift, and only made life progressively more difficult.

    I think you've gotten confused between the interpretation I was providing of the GET protocol you posted, and my description of my own experiences with GET.

    Maybe I don't have special M.E. - just lowly CFS. It's not terribly important to me.

    It would only be straw manning if I'd said that you thought AZT was preferable to GET.

    As I said, the protocol seemed to say that patients should not conitnue to increase levels of exercie when their symptoms worsened ("If they complain of fatigue in response to a new level of exercise, they should be advised to remain at the same level for an extra week, rather than progressing the duration, and to increase the exercise when the symptoms regress.")

    I've explained, in several posts, why I do not think GET is a worthwhile therapy for myself. You've quoted from parts of them, so I know you've seen them.

    I don't know why you think I believe that there is no risk to GET. It's not what I think, or what I have said. I do think that there are big differences in the potential dangers of different conceptions of GET though, and that one of the big dangers of GET is that it can play to people's prejudices about CFS, and lead to them promoting especially dangerous versions of GET. Even a sensible version of GET will still bring with it some risks though.

    I feel like you're arguing with an imagined proponent of the psychological lobby, rather than responding to what I've actually written. This is rather disconcerting.
  19. Dolphin

    Dolphin Senior Member

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    But that's a very different question to CBT based on GET.

    It's a bit like saying I think some people will benefit from drug therapy. Some drugs may work, some drugs may not.

    This is a thread on CBT for CFS. To quote a line from Ellen Goudsmit PhD: "The CBT for CFS articles describe a reductionistic model where the assumption is that symptoms are maintained by stress, a fear of activity (phobic avoidance) and deconditioning." This is the main issue. It would be a long thread if we were to talk about every possible psychological intervention.
  20. Dolphin

    Dolphin Senior Member

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    But individuals need to challenge claims about CBT and GET. Somebody has to do it. You seem happy to think you have no responsibility in that regard. If everyone took that approach, it's appears quite likely that that's all we would be offered.

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