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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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    Well, I stick by fatigue being one symptom, muscle pain being another, etc.

    So I think exercise over a certain level of activity, you don't just get fatigue and nothing else (where fatigue is one symptom, muscle pain is another, sore throat is another, etc).

    If you mean fatigue covers other symptoms, of course in your scenario if the symptoms brought on by exercise can be described by one word, fatigue, then one can say that it doesn't bring on a lot of symptoms.

    I think if they want to be honest with professionals, they should make clear that exercise in ME brings on more than just fatigue (my definition) and make clear that there is an abnormal response to exercise. As the original research paper in this thread shows, there are well over a dozen studies that have found exercise abnormalities in the condition.

    But the advice gives the impression that the response to exercise in the condition is not abnormal, or at least doesn't make clear it's abnormal.
  2. Dolphin

    Dolphin Senior Member

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    Advice to professionals needs to make clear that there is a difference in what happens in a normal person and what happens in somebody with ME/CFS after exercise. There are numerous studies that show the response we get is much more exaggerated (biologically) or simply different.

    Medicine is and should be much more exact (psychiatry may not always be which may be part of our problem).

    Muscle pain and fatigue can be distinguished. I went to physios when trying to exercise and they could feel pieces of soreness on the muscles that I was trying to exercise. It wasn't equally in every muscle throughout my body. One can have VAS scales for different symptoms.
  3. Dolphin

    Dolphin Senior Member

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    Who says our symptoms are exactly the same as those induced through over-exertion and sleep deprivation? Certainly studies suggest biologically that our results are very different to when healthies are pushed to exhaustion through exercise. I never felt the way I do after I have pushed myself. Exertion when I was healthy didn't bring on sore throats, tender glands, etc.

    Perhaps you had mild ME/CFS at the time you are remembering.
  4. fresh_eyes

    fresh_eyes happy to be here

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    I haven't kept up with this thread, so forgive me if this has already been gone over.

    I agree with Jenny - I think it's very important to draw this distinction. I have periods when tiredness (which I would call "fatigue") is my predominant symptom, and I have to sleep perhaps 14 hrs. per day. During other phases, I have a reasonable amount of energy and sleep about 10 hrs. per day, but during those times my body aches and my throat is very sore.

    If I could communicate one thing about this to physicians, it's that exercise makes us, not *tired*, but *sicker*.
  5. Esther12

    Esther12 Senior Member

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    I really think it is just semantics.

    I quite agree that the way people with CFS respond to exercise is far from normal, and anyone treating CFS needs to be aware of this. I've said many times that I think that a real danger with GET is that it's so poorly defined it can allow practitioners to impose their own prejudices upon it.

    I don't think that suffering from CFS is EXACTLY the same as the affect of sleep deprivation and over-exertion, but I think many of the elements mentioned (muscle pain, cognitive difficulties, exhaustion, nausea, etc) can be induced in such a way, as a part of severe fatigue.

    I certainly think that CFS involves very strange responses to exertion - these extreme and unusual responses are what have defined my illness. I just find that the word 'fatigue' sums most of them up relatively well. The other elements (sore throats, etc) are far less disabling, although still significant in being clearly abnormal biological responses linked to my illness.

    I understand why some would resent the word 'fatigue', so often associated with just being a bit tired, being used to sum up such a disabling and life changing illness. But I think 'fatigue' works just as well describing someone stumbling towards a toilet to vomit as their head spins and muscles scream in pain as it does someone who could really do with half an hour with their feet up.

    It still seems to me that 'fatigue' as used by others here is really the same as my definition, but just limited to its mildest manifestations. It could be that I've just not experience 'fatigue' without at least some minor element of cognitive difficulty or muscle pain, so I'm unable to imagine it. Thinking about my own experience, when my muscles and mind feel fine, I'm not fatigued. It could be a lack of my own imagination though.
  6. Dolphin

    Dolphin Senior Member

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    I hope this won't confuse things but thought some people might find this of interest:

  7. gracenote

    gracenote All shall be well . . .

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    a vocabulary for fatigue

    I think this is interesting. I've pulled a couple of paragraphs from the discussion section of the article.

    Examining types of fatigue among individuals with ME/CFS
    Jason, L.A., Jessen, T., Porter, N., Boulton, A., Njoku, M.G., & Friedberg, F.
    Disability Studies Quarterly, 2009, 29, 3

    http://www.dsq-sds.org/article/view/938/1113

  8. Mithriel

    Mithriel Senior Member

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    If it included muscle pain and cognitive difficulties it would say that.

    I don't think we can talk about a treatment based on your very strange idiosyncratic definitions. "I love the way birds wag their tails. I include dogs in the definition of birds."

    Lest it be thought that I have a bias in the way I think about GET I will explain my problems with it more fully.

    As we can see from the information Tom has posted the aim seems to be for people to walk twenty minutes a day. We can assume this is without aids as Peter White explicitly says that aids will make people think they are really ill, not just imagining it so must not be used

    How far are they expected to walk, will it count if they only manage a few yards in twenty minutes? Are they cured if they can manage twenty minutes of walking? The clinics think they have achieved what they set out to do if a patient manages their walk, another success, move on to the next patient.

    It is facile, superficial and works for the good of the therapist NOT the patient. It is easy to tick off on a questionnaire but is meaningless for the patient. Unfortunately, outsiders see being able to walk for this length of time as a sign of good health and assume that this is on top of doing all the essentials of living. That is not true for many people but it is how PW gets away with calling this a cure.

    What you end up with are a lot of people who still have CFS but can now go for a daily walk if they give up everything else. When these sort of studies have been done using actimeters people actually walk LESS after this sort of training they just change what activities they do.

    A Belgian study showed that LESS people worked at the end of treatment than at the start. A cure in most illnesses is seen as the illness being gone, management as being able to look after yourself with less symptoms. Nowhere is it going for a daily walk.

    It is a con trick. People struggle to do their walk as if it was a goal in itself, but it should only be a goal if it has benefits in more useful areas, as a step on the way to full recovery or to being free of pain, say.

    If the treatment were actually for the benefit of patients, to get them moving and to manage their illness, it would be personalized. One person may want to gradually be able to dress themselves, another to get into the garden and so on. A twenty minute walk round Tesco so that you could eat what you wanted would be much more useful than a walk to the end of the street and back.

    Any treatment that had patients and their welfare as the goal would start with what they wanted and what they hoped to achieve. Doing more exercise and movement is a good goal in CFS but GET programs are not the way to do them. They are designed for the therapist not the patient. The therapy is given, what happens to the patient is unimportant, another person with CFS has been processed through the system.

    If these programs where good for patients they would be getting good results anyway so the definition of what CFS is would not have to be continually widened so that they could get people who would get better onto them. They are seeking patients to match the therapy, not the other way round.

    Michael Sharpe said that there was no theoretical basis to treating with graded exercise it was just thought it would work. Simon Wessley admits that a third of patients show no benefit - he doesn't admit they get worse. Many patients feel stressed when the therapists berate them and tell them they are not trying when they are unable to increase what they do. They end up much worse off, but having been "processed" they are ejected form the system and become invisible. They had their chance at a "cure" and blew it.

    When asked about the severely ill Peter White famously said they could start by trying to raise one finger.

    Something rude comes to mind.

    Mithriel
  9. Esther12

    Esther12 Senior Member

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    Where does the discomfort come from, if not muscle pain? What discomfort do you think they're talking about? What decreased effeciences, if not that resulting from cognitive difficulties? How do you think effeciency is decreased?

    No wonder some people are offended by the notion that they're disabled by fatigue if they think fatigue, by definition, can not be disabling.

    I expect that some people here do have other distinct and disabling symptoms. If people choose to use language differently to me, that's fine, but some of these criticisms of my use of language are not fair.

    Yeah.





    I feel like some people are assuming that I've said fatigue is one single, easily defined experience which will be the same for all those with CFS, healthy people, etc, etc. This is not the case.

    I understand that this can be a touchy subject for some, and that you may not want to use the word 'fatigue' because it can be misunderstood by others, but please don't impose their misunderstandings on to me.
  10. gracenote

    gracenote All shall be well . . .

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    what do we mean when we say fatigue

    I think this a big part of it. We tell someone that we have chronic fatigue syndrome and they say "Yeah, I'm tired, too." And then the communication stops.

    But the meaning of words, particularly used in research, is critical. That's why I liked the previous article that looked at types of fatigue so that future research can be comparing like with like. And understanding exactly what is meant when a person with CFS has "fatigue" while doing a program like GET would be important for all involved to know.

    We can each have our own meaning for words, but at some point, if we are to communicate with each other, we will have to come to an understanding of what the other means when using a particular word. And on this word fatigue, maybe we will need to use a few extra words to explain exactly what we mean when we use it. I'm okay with that.

    Examining types of fatigue among individuals with ME/CFS
    Jason, L.A., Jessen, T., Porter, N., Boulton, A., Njoku, M.G., & Friedberg, F.
    Disability Studies Quarterly, 2009, 29, 3

    http://www.dsq-sds.org/article/view/938/1113

    ----------

    Okay Mithriel, I read this really late last night, but rereading it this morning made me laugh.

  11. Dolphin

    Dolphin Senior Member

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    I don't really particularly care what language you use. This discussion is more general than that - it is about what language is used when describing the effects of exercise in the illness to professionals. I think that fatigue does not get the effects of exercise across or why we might stop continually trying to increase our activity - it's not simply because of "mild fatigue".

    As I also said, often when I was exercising, I got muscle pain in distinct muscles based on the muscles I used. The physio could isolate spots. To describe this as simply me being fatigued is not accurate enough.
  12. Dolphin

    Dolphin Senior Member

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    BTW, some readers in this thread may not know that (I have read) some therapists (e.g. in the UK) try to work on their patients to stop using the term M.E. and refer to the condition as chronic fatigue/chronic fatigue syndrome. Some programmes try to persuade patients that the symptoms they feel are normal symptoms and there is no abnormal response to exercise in the condition.

    One knock-on effect of all the CBT/GET clinics in some countries could be that people who have been "CBTed" into believing exercise is the answer, M.E. is a bad term and fatigue is sufficient to describe the symptoms, etc. will have more influence in the patient community, in patient organisations, etc.
  13. Advocate

    Advocate Senior Member

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    "impaired mitochondrial function"

    For several months I've been observing what results I get from using different google alert search terms related to mitochondria. These three words, in quotes--"impaired mitochondrial function"--seem to get the most useful results.
  14. Esther12

    Esther12 Senior Member

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    Sure, sometimes the development of specialist terminology can be helpful. But it's still important to recognise that not all will adopt it, and that the broader uses of these words will still occur.

    In your second post, you seem to accept that 'fatigue', as it is used by UK CFS therapists, is used to encapsulate the wide range of symptoms experienced by those with CFS. Doesn't that make the point of contention which prompted this semantic discussion rather absurd? You initially seemed to be complaining that the GET protocol only mentioned 'fatigue' as a response to GET, and somehow interpreted this as a claim that patients would not suffer from muscle pain, cognitive difficulties, etc. You now seem to recognise that actually many therapists use 'fatigue' in a way which can include these other complaints.

    Throughout this thread, I've been complaining about the fact that GET is often so loosely described that it can be interpreted in a number of different ways, and allows too much leeway to the prejudices of the particular practitioner. I think this is a fair complaint. However, to impose the weakest interpretation upon descriptions of GET and to then complain about that is just straw-manning. If GET is criticised for claiming that patients only suffer fatigue and not muscle pain and cognitive difficulties, then anyone who knows that the term 'fatigue' being used is intended to include these difficulties will be able to rightly dismiss your complaints as ignorant ramblings. *

    I've rather forgotten what abnormalities I have, they never seemed to lead to useful treatments, so I lost interest.

    The fatigue of running a marathon is completely different to the fatigue of staying up all night, which is completely different to the fatigue of being woken up in the middle of the night, which is completely different to the fatigue of those with CFS, which is completely different to the fatigue that stems from emotional exhaustion, which is completely different from the fatigue of depression, which is completely different to the fatigue of pregnancy, which is completely different to the fatigue of starvation, which is completely...

    Hmm... it's almost as if 'fatigue' can be used to refer to a fairly wide range of phenomenon. Who’d have thought it?

    *Mod Note: Please refrain from using that kind of language.
  15. Dolphin

    Dolphin Senior Member

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    No, we were discussing the protocol. It is designed to describe to all sorts of people how to do GET not just existing people who may misuse the term. Saying that patients just stop because of fatigue is not giving enough information about why they stop.
  16. Dolphin

    Dolphin Senior Member

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    I really have to wonder whether you have some sort of vested interest in GET and CBT based on GET!

    I think other people agree with me that fatigue does not describe how people feel feel when they exercise above their tolerance so I am perfectly entitled to criticise its use in a description of a program. Just because some people such as Peter White may misuse the term within their clique to give the impression that's why people stop, doesn't mean it is correct.
  17. Esther12

    Esther12 Senior Member

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    Throughout this thread, I've been complaining about the fact that GET is often so loosely described that it can be interpreted in a number of different ways, and allows too much leeway to the prejudices of the particular practitioner. I think this is a fair complaint. However, to impose the weakest interpretation upon descriptions of GET and to then complain about that is just straw-manning. If GET is criticised for claiming that patients only suffer fatigue and not muscle pain and cognitive difficulties, then anyone who knows that the term 'fatigue' being used is intended to include these difficulties will be able to rightly dismiss your complaints as ignorant ramblings. *

    If you know that Peter White uses the term 'fatigue' differently to how you would, then it is absurd to interpret his writings as if he is using your definition, and not his. Doing so will make sensible criticism of his ideas far harder.

    * Mod Note: Again, please refrain from using that kind of insulting language. There are better ways to make your point than that. Second warning.
  18. Dolphin

    Dolphin Senior Member

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    Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled clinical trial.

    Nijs J, Almond F, De Becker P, Truijen S, Paul L.

    Clin Rehabil. 2008 May;22(5):426-35.

    Column 1: Pre-exercise (meanSD)
    Column 2: Immediately post-exercise (meanSD)
    Column 3: 24 hours post-exercise (meanSD)
    Column 4: ANOVA (F; P-value)

    VAS fatigue 48.9 +/-23.1 62.1+/-24.3 58.0+/-28.8 4.1; 0.02

    VAS musculoskeletal pain 32.8+/-24.5 44.0+/-29.9 41.7+/31.0 5.9; 0.01

    VAS sore throat 13.2+/-17.9 16.4+/-23.5 26.7+/-26.9 9.2; 0.002

    Notice how the researchers use different symptoms. They don't bundle them all under fatigue.
  19. Dolphin

    Dolphin Senior Member

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    Who says it is the weakest interpretation? In fact, what do you mean?
  20. Dolphin

    Dolphin Senior Member

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    Do I have to repeat myself, I am saying the word (fatigue) they are using does not explain to many of the readers the symptoms people feel.

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