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"Cognitive behavioral therapies" by Bleijenberg et al. (2003) (Nijmegen, Netherlands)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 4, 2012.

  1. Dolphin

    Dolphin Senior Member

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    The protocol for the CBT for CFS that is performed by Nijmegen researcher is based on:
    -----
    Bleijenberg G, Prins J, Bazelmans E. Cognitive behavioral therapies.
    In: Jason LA, Fennel PA, Taylor RR, eds. Handbook of chronic fatigue syndrome. Hoboken: Wiley and Sons, 2003: 493526.
    -----

    This can be read for free at: https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1009C&L=CO-CURE&P=R1774&I=-3

    Unfortunately, it's long.

    Amongst other studies, this is referenced in Nijhof et al. (2012)

    These are not "moderate" people - they are "hardliners" e.g. the participant is encouraged to see themselves as an "ex-patient" at the end.
     
  2. Dolphin

    Dolphin Senior Member

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    Extract

    Based on actometer readings, patients are divided up into two groups

    "Relatively Active CFS Patients" and "Passive CFS Patients".

    This is part of the protocol for the latter group:

    I think it's completely inappropriate. But I think gets across the attitude used.
     
  3. charityfundraiser

    charityfundraiser Senior Member

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    How I read the manual with a mental filter. The following are snippets. I think the example programs are just examples and the rest of the commentary explains that the program is adjusted as necessary according to how the client responds to it.

    This suggests that the illness leads to an increase in the cognition of focusing on bodily symptoms, so even if they say that focusing on bodily symptoms supposedly is a factor in perpetuating the illness, the illness itself led to that in the first place.

    CONTROLLED STUDIES INTO CBT FOR CFS

    According to this, GET apparently works without CBT or any ideas about abnormal beliefs. On the other hand, according to this manual itself, GET apparently works without the idea of deconditioning either. Thus, it seems like the explanations put on top of GET are irrelevant except in that different explanations might motivate or demotivate different patients from trying GET at all.

    DISTINCTION BETWEEN RELATIVELY ACTIVE AND PASSIVE CFS PATIENTS

    HOMEWORK ASSIGNMENTS

    RECOGNIZING AND RESPECTING LIMITATIONS

    ATTAINING AND MAINTAINING A BASE LEVEL

    THE BASE LEVEL AND THE ENVIRONMENT

    GRADED ACTIVITY PROGRAM

    PHYSICAL ACTIVITY PROGRAM FOR LOW-ACTIVE CFS PATIENTS

    MENTAL ACTIVITY PROGRAM FOR PASSIVE CFS PATIENTS

    SOCIAL ACTIVITY PROGRAM FOR PASSIVE CFS PATIENTS

    FOLLOW-UP AND TREATMENT EVALUATION

    WHO SHOULD PRACTICE CBT?

    RECOVERY OR MANAGING THE FATIGUE?

    This last analogy, I found to be surprisingly true. Four months after starting tai chi class from being bedridden, my teacher started asking me for a half an hour of practice every day at home. In my head, I was thinking, well, she doesn't understand about my illness. That's way too much too fast. I told her that I practiced a few minutes per day and explained that after every weekly class, it took me two days to recover. This happened a few times and I got kind of annoyed and frustrated and wondered if I could handle continuing with this teacher's expectations. So okay, I like testing things, so I thought I would probably prove that this was not possible for me at this time. The next week she asked how much I had practiced and I happily told her that I had managed to practice four times at half an hour. I did not succeed in practicing every day but it was a lot more than I thought I could do and would have set for myself. Four times might have been a tad much still and the following week, I toned it down slightly to about 15 minutes per day but that is still a lot more than I initially set out for myself at that time. I only found my upper limit by having someone set an expectation higher than that limit and higher than what I thought or felt like I could do.
     
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  4. Esther12

    Esther12 Senior Member

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    It's possible that some patients do not mind being lied to and manipulated in order to be motivated in to behaving and thinking in a more 'functional' manner, or even find it to be 'helpful'. For myself, I find such an approach to be pretty disgusting, particularly when it is done, as it so often is, without informed consent.

    Maybe it's reassuring to be encouraged to believe that:

    For myself, unless there's some compelling evidence that such a claim is true, I would not want to be placed under the authority of quacks willing to promote such a view.

    I think that the truth matters, and that patients should have a right to be spoken to honestly and clearly.

    Even for those without any particular commitment to reality, the promotion of false and misleading views about CFS and the extent to which recovery is under the control of patients, can and does have profound effects upon the way in which those with CFS are viewed and treated. If the complaints CFS patients get following activity are just the result of deconditioning, then that justify much of the ways in which we have been treated. If it is not true, as it seems increasingly clear it is not, then treating CFS patients on the assumption that it is should be viewed as vile and disdainful.

    Just look at the recent paper assessing patient/clinician interactions in the FINE trial, which promoted a similar view of CFS. Patients were being viewed as 'bastards who didn't want to get better" - and unsurprisingly so if clinicians had been trained to treat CFS in such a manner.

    ps: I don't want to sound too harsh to someone defending the CBT approach to CFS, as I expect that may be something of a minority view here, and it would easy for a discussion to feel bullying... but an honest pursuit of truth is fairly important to me, and an approach to CFS which suggests those with the diagnosis should have their cognitions pragmatically managed would serve to justify the abuse and abandonment of everything that I think is valuable about my own humanity. Sorry if that means that I am coming across as more personally aggressive than I intend.

    It could be that you've found that you were not previously pushing yourself to do as much as you could have, and this caused problems from deconditioning - I'm pleased to hear that a change in approach has helped you. But I do not see how that could make approach to CFS detailed above any more acceptable.
     
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  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    As I have mentioned before, there's a famous psychological experiment, where an unsupecting volunteer is asked to participate in a "scientific study"
    the scientists and "victim" in next room are both actors
    the volunteer is asked to hit buttons, that will give increasingly powerful electric shocks to the "victim" in next room (unseen, but can be heard by the volunteer/"scientists")
    eventually,the shocks start causing the "victim" to scream in pain (all faked of course)
    eventually, the last button will kill the "victim"

    about 80% of folk will hit that last button, because most folk are easily persuaded that a "professional must be obeyed, for the greater good" etc

    In other worlds

    THESE PSYCH STUDIES ARE A LOAD OF FRAUD, CRAP, USELESS BECAUSE OF SUCH!

    done corrctly, one but especially two people, in a proessfional "guise/manner" can convince most folk to do/agree to almost any damn thing, provided it's done right, see hwo con artists work, for proof, or interrogators

    Plus, lets be brutally honest here, these psychs are in deep, deep poo.
    If they do not prove themselves, they are going to lose their medical licences, possibly got ot jail for criminal abuse of patients, fraud etc.
    or, they are so blinded by their bullshit, they are zealots, and "there are none so blind as those who WILL not see"

    Past 100 years shows that the claims by these kind of scumbags (*) that "patients suffering are purely all in their mind!", have NEVER EVER born out.
    perfect, perosnal attested case of this:
    my mum got her back severly damaged in an accident, psychiatrist told her her pain was "neurasthenia!"
    as usual, total clueless incompetant, sociopathic moron
    Mum's got scarring on the spinal cord causes excurciating pain which is shown on her X Rays! Since when the flying monkey poo, did psychological problems show up on X Rays, EH?!
    (arachnoiditis, iirc, sigh, there's that and another one and my wonky brian can't recall which at the moment.....meh. Own mum, still can't recall which...blerg!! Oh well I maybe a moron nowadays, but I'm a higher functioning moron, unlike the psychs! :p)

    (*) yes, they are bastards, grade A, died in the wool, goat fornicators deluxe :p
     
  6. charityfundraiser

    charityfundraiser Senior Member

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    Esther - I actually agree with you about that quote and others like it, as well as what you say about reality. I'm not defending CBT for CFS, mostly. As I've said many times, I don't believe in the deconditioning hypothesis nor most of the CBT stuff for CFS. I just think that it's possible that GET may help some people apart from CBT for the reasons I posted in the peanut thread. I think some of the medical/psychiatric views are similar to "positive thinking"/"New Thought" (which is like create your own reality by thinking it, and all diseases are caused by negative thoughts crap) which I believe are abusive. The one person who ever recommended that stuff to me is really abusive!

    Also, it was not that I was not pushing myself, but previously I had been overdoing it with the walking without a real schedule and reaching PEM too much. Another possibility is that the activity choice matters and my improvement could be mainly due to that and the graded nature is secondary or would naturally arise from finding an activity that inherently has a positive cycle for that person (yoga, tai chi, stretching, and massage for me).
     
  7. Enid

    Enid Senior Member

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    I must agree with many of Silverblade's points - and settle for being a higher functioning moron.:oops:
     
  8. Esther12

    Esther12 Senior Member

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    Given the varying approaches to activity management which can be classed as 'GET', then I think that's almost certainly true. I expect that everyone in the world could alter their behaviour in a way which would improve their health, lives and their ability to pursue their own interests and desires.

    I see the psychosocial approach to CFS, and the medicalisation of patient's cognitions and behaviour, as having made that harder for people, and I think it is a mistake to turn a playful and experimental approach to activity levels into a 'therapy' which is to be promoted by paid 'experts'.

    This is a complicated topic that has probably been gone over a few times before though. Good luck with everything.
     
  9. alex3619

    alex3619 Senior Member

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    The issues with CBT and GET are different, particularly if the CBT is based on a psychosomatic model.

    Psychosomatic medicine has never proved its basic thesis: that many diseases are entirely caused by mind. This is a post-Freudian claim. Psycho-somatic means mind-body. In the early days of psychosomatic medicine it was about examining the mental side of physical illnesses, like stomach ulcers. I think thats a valid pursuit. The claim that mental issues cause physical disease in the form that currently comprises psychosomatic thinking is however unfounded. SilverbladeTE is correct: a century of trying to prove this has failed. Sure depression and anxiety can cause physical symptoms. Sure the mind and body are connect (to me the mind is an emergent property of brain though). That does not mean that aberrant thoughts are the cause. Even primary depression is now suspected of being neuroimmune. Anxiety is mostly neurological. They are physical states in which the thoughts modify the outcome. So psychiatry (particularly biopsychiatry) and counselling are ways to assist the patient. They are not directly addressing the underlying problem.

    Now neuroscience may have a cure for PTSD. There is research on rats that is claimed to show how amygdala changes can be reversed, removing the problem. This has not been done on humans.

    Exercise is another debate entirely. I think the evidence is now clear that for mildly affected patients that non-aerobic exercise can produce benefits if done in moderation. That is the point that differs with GET. GET aims to increase activity steadily over time. There is no concept that what would be considered moderate activity for a healthy person may be far too much for someone with ME.

    So its not about exercise itself, its about how patients are induced to exercise and how much.

    The rhetoric in the CBT and GET literature is all over the place. In practice in the UK I have heard many stories of how people are afraid of the psychiatric profession, they are being abused. Furthermore this abuse is used to induce them to do way more exercise than they can handle - I know of cases where this has happened. Patients are threatened with benefit loss or loss of general medical care if they do not comply. This is bully tactics, and the rhetoric on the ground is such that those working to "support" patients are trying to force patients to do more, sometimes much more. Even though some of the GET literature says otherwise, it is not what is being practiced for the most part.

    What we need is research into exercise being conducted by exercise physiologists not psychiatrists. If its OK for psychiatrists to do this, then it should be equally OK for exercise physiologists to research psychiatry, surely? I wonder what psychiatrists would think of that idea?

    Exercise physiology research, done by experts who are well aware of the physiological data on ME would produce results in time. We would work out how to assess capacity, advise on exercise, and support patients to exercise. This would be done based on evidence. Having psychiatrists try do this is absurd.

    Studies done by Pacific Labs and the work by Nancy Klimas and the Lights are examples of this kind of research. We need more of that, and less of psychiatrists researching outside their expertise and making hyperbolic claims to media and government.

    Bye, Alex
     
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  10. Esther12

    Esther12 Senior Member

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    Hi Alex. I don't think that this is the model of psychosomatic medicine which most psychosocial CFS researchers hold, eg: the role of deconditioning. I also get the impression that most recognise that all manner of biological mechanisms are likely to be involved, talk about the false division between mind and body, etc... then they attempt to justify their approach to CFS and the medicalisation of patient's cognitions on pragmatic grounds.

    Please don't make me defend them though... I'm already in a bad mood.
     
  11. charityfundraiser

    charityfundraiser Senior Member

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    Alex - I pretty much agree with everything you said, especially good point on the last part about exercise science being done by exercise physiologists. What I was doing was like trying to pick through crap to find a few nuggets since the research done by exercise physiologists has been close to nonexistent until now. I think exercise physiology doesn't get as much respect as other fields but it seems to be improving. I have not seen a department of exercise science at any Ivy League level university and not too many in top tier universities which is unfortunate.

    I don't know what the data is but at least for me, the non-aerobic exercise helped and I was not mildly affected. I was among the most severely affected (starting from bedridden 23 hrs/day and every moment was PEM). I'm thinking that the exercises that help me happen to be non-aerobic but that the reason they help might have to do more with relieving neuromuscular strain (Dr. Rowe's new project) and "cervical neuro-muscular syndrome" (there's a post in Other Health News). (Yoga and tai chi work on the spine a lot.) Thus they might be not just exercise but actually addressing part of the cause of some CFS. Anyways, I'm getting off-topic for the thread.
     
  12. Enid

    Enid Senior Member

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    We want the cause and extent of pathologies to address not things that may or may not aid at particular stages in this illness - it is common sense to all to try to keep moving if possible - and the little talking to of the psycho lobby UK (listen to Pemberton eg). Are they stupid that they cannot absorb real science.
     
  13. alex3619

    alex3619 Senior Member

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    Hi Esther12, if they believed it was deconditioning that should have been debunked by all the studies that proved it wasn't deconditioning. Ditto for depression. We are being classified as having functional somatic syndrome, which used to be somataform disorder which is under the banner of somatic distress disorder.

    The claim one thing in one place, claim something in another, speak about it another way somewhere else, and practice medicine with it some other way. So the reason we are deconditioned in some claims is we don't want to exercise, we are suffering some kind of psychological trauma. Dress it up however they want, they are still talking about a psychosomatic condition.

    To be honest I am not sure what you are claiming in this post. Are you trying to say they primarily treat us as psychosomatic, or primarily as deconditioned? I think its the former, so if you do too we agree. Maybe you could clarify if this is the case?

    Talking about the false division of mind and body is well enough, but its also misdirection: mind and body are connected, ergo its OK for us to mess with the minds of sick people even though they don't have a firm theoretical foundation to what they are doing. Its code for its ok to treat it as psychosomatic as the mind and body is connected, yes they acknowledge pshysical issues, but they are going to treat it as psychiatric anyway. The main reason for exercise, under this view, is to teach the patient that activity wont harm them ... but it frequently does the opposite. Rather than acknowledge the issue they dismiss it, or blame the patient, or claim they must be misdiagnosed, or just brush it off as "not everyone can get better". In any case these patients are left a lot sicker and without support or hope by the CBT/GET practitioners.

    Now the exercise physiology people are doing something else. They are looking at the limits and causes of our physical capacities. As a consequence they are able to give advice based on objective data as to what kinds of exercise we can do. There is not psychosomatic theory in sight, its pure biophysical.

    Bye, Alex
     
  14. Esther12

    Esther12 Senior Member

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    I'm trying to say that treating CFS as 'psychosomatic' does not require a commitment to the notion that biological factors do not also play a role.

    I quite agree with your point about the willingness of many of those adopting a psychosocial approach to CFS to adopt rather evasive and manipulative language when they discuss their views (which is another reason that I'm hesitant to attempt to defend their variable views), but I thought that your description was a bit off.
     
  15. Enid

    Enid Senior Member

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    Who cares about personalities - this is pure science and findings for the relief and help for millions.
     
  16. Dolphin

    Dolphin Senior Member

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    Like Esther12, I think the issues involved with GET and CBT for CFS are quite similar - CBT is often based on ideas about deconditioning.

    (Although Nijmegen have tried to move a little away from the deconditioning hypothesis when they found the therapies didn't work as well at increasing activities)
     
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  17. Dolphin

    Dolphin Senior Member

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    Extracts from a related manual are in the first (and currently only) post in this thread: http://forums.phoenixrising.me/show...elatively-Active-and-for-Passive-CFS-patients
     

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