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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Cognitive-Behavioral Therapy: Has Anyone Here Benefited at All?

Discussion in 'Alternative Therapies' started by slayadragon, Jun 15, 2010.

  1. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    I was doing a quick Pub Med review today for CFS and realized that about half the articles take a psychological tack.

    They all say things like, "It's well known that CBT can relieve the fatigue in CFS."

    Few of them suggest that CBT is any sort of cure for CFS, of course. Just that it can have an effect.

    The peculiar thing is that I've not ever encountered any CFS sufferer who has stated that CBT has been helpful.

    Is it that CBT really does nothing, and the studies are making it up?

    Or that they're using a different patient population?

    Or that the people who have benefited from it don't come to these online forums?

    Or that people on the forums haven't tried it?

    Or that people on the forums who have benefited don't want to admit it because they're afraid of what others will say?

    I honestly don't know what the answer to this is. I don't have an agenda other than trying to find out.

    If folks have thoughts, please do share them here (or pm me or e-mail me).

    I'm especially interested in hearing from anyone who actually has tried CBT, but all comments are welcome.

    Thanks.

    Best, Lisa (my e-mail is on ya-hoo, slayadragon)
  2. V99

    V99 *****

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    CBT can have an effect on how you feel about the disease, it does not have an effect on the underlying disease or the disability. The supposedly positive CBT studies never show any evidence that it effects the actual disease. They never use objective outcome measures, and only look at the subjective response. This being the case, anyone who is not effect psychologically by this disease will have no response to CBT. The other thing to bear in mind, is that CBT involves using your brain, as this requires energy, some ME sufferers will find this impossible to undertake without causing a relapse.

    I'm sure some one else will provide a clearer explanation, thought I would give it a shot.
  3. V99

    V99 *****

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    I should add, that the studies don't always match with what the authors say they show.
  4. kolowesi

    kolowesi Senior Member

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    Slayadragon preponderance of CBT articles

    I am truly shocked. And horrified.

    I'm not sure if my therapy is considered CBT. I started going to a psychotherapist about month 4 of my illness, as a friend told me my problems were likely emotional.

    Very early on, the therapist told me I would never have chosen this disease, as all my self-esteem came from my work.

    So she certainly didn't try to convince me that I wasn't really sick (although I have tremendous fatigue, it's from feeling sick, it's not just tiredness). She was concerned about my illness.

    Therapy has helped me become free from a lot of the emotional pain I used to live with. I spent 5 years with the first one, then got to a point where I felt I had gotten all I could. Years later, after my father died, I started with a Gestalt psychotherapist. This practice has been even more freeing.

    However, these years of working with a therapist have not made the slightest difference in my illness. My biggest turn-arounds have come from valcyte and antibiotics, and from treating parasites with Chinese medicine. These turn-arounds have not lasted, as I tried to exercise every time I got a little better (5 times) and ended up with a new and different infection every time.

    I look forward to hearing the experience of others. Could you point me to an explanation of the "CBT" that the medical establishment regards as so helpful?

    Kelly
  5. Esther12

    Esther12 Senior Member

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    It depends what you mean by CBT. I think those with CFS often only think of CBT as being 'Let me help you stop pretending you're ill' Chalder style CBT.


    I know someone who found CBT for sleep helpful [edit: They've now reversed this, saying that they think it was not, and being irritated by the exaggerated claims that were made for it]. The CBT didn't have any affect on the continuing excessive fatigue, but it did reduce disability levels by improving consistency and quality of sleep.

    I also think a lot of CBT/Mindfulness type ideas are useful for helping people deal with being ill and encouraging a clarity of thought and control over one's emotions which is generally useful.

    I've also spoken to a few of people who found CBT to be helpful for the core component of their illness (although most talked about it as some sort of life-style training, rather than CBT. Sounded like CBT to me). They always seem a bit confused about it though, and seemed to talk as if they were healthier than they were (really extreme positive thinking, to the point of denial). They really did seem to also make genuine improvements with it though. I don't know what was going on there.
    Last edited: Dec 4, 2013
  6. V99

    V99 *****

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    Ether12 is correct, CBT is not always just CBT.
    The it's all in your head/ you are making yourself sick CBT, is the one that is most frequently used in the UK.
  7. HopingSince88

    HopingSince88 Senior Member

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    Ditto and Ditto.

    I have been seeing a gestalt therapist for about 18 months. It has been a very good experience and has helped with mood and depression(which occurred long after falling ill). Uses an integrated approach to mind-body-spirit and helps with recognizing what can and cannot be controlled.

    Has not improved my basic symptoms (unrefreshing sleep and fatigue, and memory and cognitive problems...etc).
  8. alex3619

    alex3619 Senior Member

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    CBT is just a tool - misuse is due to the practitioner

    Hi Esther12

    I agree with you on this. CBT is just another psychological tool. How it is used is critical.

    The biopsychosocial people think it can be used to cure us of false illness beliefs. None of their published data convinces me it has any purpose, and is contraindicated by my own case history and that of nearly all CFS patients. If they would listen to us and come to an independant conclusion, not driven by out of date theory, I think some of them could realize they are very wrong about this.

    CBT in mainstream use is something else. I personally had CT and BT in 1989 and 1993 respectively, when looking for answers. I found the cognitive therapy component helpful when dealing with stress, and has similar lessons to some branches of Buddhism as far as I can tell. The behavioral therapy I had was only relevant to a specific CFS related research protocol, and has limited relevance outside of that.

    I would recommend traditional CT to anyone who is highly cognitively driven, purely as a tool to improve coping skills. Given that many of us have blunted emotions due to brain fog, this could be most of us. However, in severe brain fog CT breaks down because if you can't think, you can't use CT strategies. Its all sensation (pain, fatigue, exhaustion, mental numbness etc).

    In most parts of the world, most therapists who use CBT do not buy into the UK biopsychosocial theory of CFS, according to the rumours I hear (I have not researched this). It pays to ask I suspect. I do know that at least some practitioners of CBT worldwide really dislike the use the biopsychosocial movement has made of their therapy.

    Bye
    Alex

  9. Esther12

    Esther12 Senior Member

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    I think that one of the problems with the way CFS has been treated is that it's left so many patients feeling hostile towards any sort of psychological help.

    People like Wessely and Chalder talk as if patients were always going to be opposed to any sort of psychology because we're such committed naive dualists, or so deeply lacking in personal insight; without recognising the role their quacky unreasonableness has had in fostering a distrust of psychology amongst patients.
  10. Martlet

    Martlet Senior Member

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    That is such a shame because I found my three (once a month) talks with the psychiatrist who sorted out my sleep patterns immensely helpful, not with my symptoms but with adjustment to a completely alien lifestyle. He helped me to stop resisting the very things that would help me - like carefully pacing and using that infernal wheelchair.
  11. Sherby

    Sherby Sherby

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    I had CBT therapy 20 years ago and thought as i walked out of there "What a load of Bollocks, these guys are mad" The next weekly session i purposely picked at every point they made and in the end to their frustration was asked to leave as some of the other patients started to also ask loads of awkward questions. Sorry that i ruined it for the others but i was so angry. I cant imagine what CBT is like now.
    I remember a news item came on stating that a new cure for ME has been found. This was ten years later. They interviewed a lady about 20 years old, saying that her life had been transformed by CBT and the problem was that she had been watching to much telly. A couple of my Friends called me and told me they have found a cure. The power of the Press !!!!!!!
  12. Sherby

    Sherby Sherby

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    Sad but very true. Thats the power of the press
  13. Min

    Min Senior Member

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    I had Wessely (had never heard of him then) style CBT & GET from a senior hospital psychiatrist when I was at my most ill & in the most pain of my life & needed to lie down all day.

    It was an hours drive each way but she took no notice of how very ill I was & made it clear she thought I was a malingering, uncooperative piece of scum who just needed to increase activity levels to 'recover'. She told me the extreme pain I was in did not signify anything and I was to ignore it. She told me off for using a walking stick, without which I fall over (she didn't see my wheelchair in the waiting room).

    She expected me to concentrate and answer her for a full hour even though it was obvious I could not. She became very cross at my receptive and expressive language difficulties.Her 'therapy' consisted of repeatedly asking me to do the impossible and telling me off. I could not remember the beginning of her sentences when she had finished them, but she refused to believe me.

    Dreadful, dreaful experience and I only went to three sessions - she made me incredibly ill & deliberately made me feel completely useless. Since then I have refused to go attend any UK 'CFS' clinics.

    I wonder how much she was paid for her harmful psychobabble. What a way to treat someone with a serious neurological illness.
  14. Sherby

    Sherby Sherby

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    Min, how many years ago did you have CBT or was it recent.
  15. Galena1

    Galena1

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    Here in the UK I have participated in 3 different CBT programmes over the past 4-5 years, one of them specifically aimed at ME sufferers. The only differences between the 3 was the way in which they were presented, the principles were the same. If I recall correctly, the first (ME specific) consisted of 12 x 2 hour sessions. Three sessions in and I was wondering why I was even bothering, as were many of the group.
    My conclusion is that CBT offers only 'coping' skills and nothing more. If you are generally coping psychologically with the impact of ME on your life, as I was/am, then, in my opinion CBT has nothing to offer. You may ask why, given my opinion of the first programme, that I participated in two more. The reason was to ensure that I was seen to at least try the treatment offered because of the possible negative impact
    (exclusion from other treatments) if they should ever be offered.
    I also implemented my own strict regime of GET for about a year, based upon the concept that I know my body better than anyone else. Unfortunately, this to has proved unsuccessful. Due to inconsistent/irregular responses to GET I gave up trying. Carefully monitoring and controlling rest and exercise made no difference, I could rest and feel still feel lousy after. Alternatively, I could exercise and feel OK (less worse!!).
    I was recently offered more CBT by my GP but we both agreed that it would be a waste of time and resources that may be better utilised by someone else.
  16. Martlet

    Martlet Senior Member

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    :tear:

    Did they blame any particular programs or was it TV in general? How about movies?
  17. Martlet

    Martlet Senior Member

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    What an awful way to treat anyone! I guess this is what I don't understand. If they think it is in the mind, why are they not as kind as they are to people suffering from mental illnesses?
  18. Sherby

    Sherby Sherby

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    If my memory is correct, i think she was alright with our basic 5 channels. The problems began when she got SAT and started watching CNN,ABC,
    FOX,NBC,TNT, She must have suffered a lot. The poor girl.
  19. Hope123

    Hope123 Senior Member

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    I seeked out CBT on my own at the very beginning of my illness since I had read that it could help it.
    However, I was and am psychologically healthy so I don't think it helped me with my physical/ mental symptoms. It was interesting to learn about what it is. I do believe CBT is effective as sole or adjunct therapy for anxiety/ depression and can help you cope with CFS but it is not really a treatment.

    For those who want to learn more about CBT, I suggest you buy or check out the following from the library. This book can be used on your own or with a therapist.

    http://www.amazon.com/Mind-Over-Moo...6749868?ie=UTF8&s=books&qid=1276650407&sr=1-1
  20. Victoria

    Victoria Senior Member

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    I have not tried CBT, but have to admit that as I was so amused by the psychiatrist I was sent to when I had a work related breakdown in 1998, I daresay CBT wouldn't have helped me much when I was working full-time & in a very negative frame of mind.

    I am so much happier now that I don't have to work in a constant state of pain, exhaustion & intermittent cognitive problems, that I would guess I don't need CBT (if it was recommended to me at the present time in my life).

    If you are able to find peace & happiness in your day (despite ME/CFS), then you have won part of the battle.

    If you are so consumed with anger & resentment, perhaps the (right) CBT practioner could help you deal with it.

    But like all therapies, both psychological & physiological, it's an individual thing - what works for one patient may not work for another. The therapist is just as important as the therapy.

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