10 Replies

  • Posted

    Yes, I have. I found it really helpful, my therapist was amazing. He taught me to effectively pace. Since my therapy I have recovered significantly to the point I am running a half marathon on Sunday, all things being well. I have had a few relapses along the way but am so much stronger and much less fatigue than two years ago. he also taught me how to practise effective sleep hygiene which also helped me hugely.
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  • Posted

    I did years of CBT, and it helped me to cope. However, it is not a cure. I believe the same results could be obtained from other modalities, such as meditation. The PACE trial recommendations of CBT and GET (Graded Exercise Therapy) seem to go too far in their claims for helping ME/CFS, and have been largely debunked by the research community. GET can actually cause great damage and relapse. 
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  • Posted

    I used my own form of CBT and graded exercise and like a previous post can now cycle 50 miles. Yes I have the odd blip and I think people doing GET do too much and finding how much to do is the key.  The biggest thing I had to learn was to stay NO I am not doing that, time to stop

    Best of luck 

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  • Posted

    Hi danielle.

    I did a kind of an abridged or 'group' version of CBT and GET  when I did the NHS, 6 week ME/CFS management training program, some  10 years ago now. unfortunately the course was new to the particular center at the time when I did it and it was a bit of a shambles. there seemed little proper understanding of ME/CFS by the professionals teaching/facilitating the course.

    unfortunately, I relapsed badly on the course for a variety of reasons, mostly being pushed too much, too far, too quickly & having to leave home early, make a number of bus connections etc.  more recently, I've heard more positive reports from that center which is in the south west.

    A year ago, I was going through a rough patch with a lot of stress on top of the 'normal' stress that ME/CFS causes. CBT it did nothing for me again.  somehow, I feel that CBT may work well for some personality types and not so well for others. I seem to be one of the latter. I did go into it with a very open mind even enthusiasm & hope. I also feel that the IAPT courses have become, more of a Government numbers 'tick the box' affair, than  ensuring the delivery of a good quality tailor made or adapted program for the recipient.

    i certainly don't want to put you off, nor am I a pessimist or cynic. I guess, however, that  with ME/CFS one needs to have a fairly good understanding of their own unique expression of the condition and know roughly what tends to trigger a relapse in terms of mobility etc.   

    all good luck with it Danielle.

    hope it helps if you decide to try it.

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  • Posted

    Hi Danielle,

    I recently finished CBT and despite having serious reservations to start I actually found it hugely helpful towards the end and have learned how to cope and manage much more effectively through it. Admittedly I was suffering from pretty bad depression and anxiety after being diagnosed with CFS and CBT helped to address those issues and massively improve my mood, which in turn has helped me to cope better with the symptoms of CFS and to start challenging myself at an appropriate pace. 

    I've even managed to start a couch to 5k running programme that my therapist helped me to tweak so it would work for me, I haven't been able to run for at least 3 years and while it's still early days I'm making steady progress and feeling great about it! I found it fantastic but was willing to give up early on, so my advice would be that if you do decide to do it, to just see it through. Good luck xx

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  • Posted

    I had CBT a few years ago and found it helped me cope better mentally but it  didn't really help me physically.  It can help you to focus more on the things you can do rather than dwell on the things you can't do. It wouldn't do any harm to try it. Pacing, relaxation and yoga are the things I feel have helped me most physically.

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    • Posted

      Hi Elaine et al

      I'm so pleased to hear that CBT seems to have helped everybody except me. I'm not sure why it hasn't helped me at all.  what helps me best is anything in the Energy therapeutic group. these modalities seem to kick start me into a more positive place whereby, I can then take charge and feel on top of things.

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    • Posted

      I'm sorry that CBT wasn't helpful for you. I think a lot of the success partly depends on how much knowledge the therapist has of ME/CFS. If they don't have a proper understanding of the condition they will probably encourage you to set goals for yourself which aren't achievable and you will end up pushing yourself past your limit. I also had GET and it made me worse too!

      ME/CFS is a fluctuating condition with good and bad days and it's important to listen to your body and not push yourself too hard. I always feel better if I'm able to pace myself and am sometimes able to gradually increase activity. My problem is unexpected things always crop up in life which mean I end up forced to do too much then I'm set back again. 

      ?You mentioned anything in the 'energy therapeutic group' seems to help you. Would be interested to hear more on what you find helpful.

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  • Posted

    The largest trial assessing CBT for CFS was PACE. This is how they described CBT I their primary paper:

    "Cognitive behaviour therapy (CBT)

    CBT was done on the basis of the fear avoidance theory of

    chronic fatigue syndrome. This theory regards chronic fatigue

    syndrome as being reversible and that cognitive responses

    (fear of engaging in activity) and behavioural responses

    (avoidance of activity) are linked and interact with

    physiological processes to perpetuate fatigue. The aim of

    treatment was to change the behavioural and cognitive

    factors assumed to be responsible for perpetuation of the

    participant’s symptoms and disability. Therapeutic strategies

    guided participants to address unhelpful cognitions,

    including fears about symptoms or activity by testing them in

    behavioural experiments. These experiments consisted of

    establishing a baseline of activity and rest and a regular sleep

    pattern, and then making collaboratively planned gradual

    increases in both physical and mental activity. Furthermore,

    participants were helped to address social and emotional

    obstacles to improvement through problem-solving. Therapy

    manuals were based on manuals used in previous trials.19–21

    CBT was delivered mainly by clinical psychologists and nurse

    therapists (webappendix p 1)."

    ?It now appears that there were serious problems and biases within this trial, and that patients who received CBT were not significantly more likely to recover than those who received no additional treatment. It seems that CBT can encourage people to feel that they have control over their symptoms, and this can lead to slight improvements in how they complete questionnaires, but that this does not lead to improvements in any of the more objective outcomes used in the trial: i) fitness ii) employment outcomes iii) distance that they are able to walk in six minutes.

    ?The New York Times ran a summary of the problems in this area titled 'Getting It Wrong on Chronic Fatigue Syndrome?', and this might be worth googling for. Best wishes.

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