Cognitive behavioural therapy for CFS?

Posted , 10 users are following.

Hi all,

I've heard on the radio this morning that it's just been discovered that CBT combined with exercises can improve the plight of we CFS sufferers.

Anybody have any comments about this?!

Hope you're all having a symptom-free day.

Annie x

0 likes, 13 replies

13 Replies

  • Posted

    Hi Anna, my advice is, to read up as much as you can about this. The M.E. association. Has a lot of info.you don't have to be a member to read up on their website. I think the Cognitive Therapy definitely does help day to day managing with all the trials we have to go through, but any exercise needs to be oh so gentle and gradual in my opinion. Take care,

    Yvonne

  • Posted

    After suffering for many years with a confirmed diagnosis from one of the experts in CFS and getting no help from anywhere I decided that enough was enough and I was going to fix this myself

    i started to be very positive about my condition. I know what CBT is about and did it myself. I also started an exercise programme by cycling on a static bike and a serious pacing programme. It took about 6 mths before I started to see any real benefits.

    almost 2 yrs on I am the best I have been in ages. Can now cycle outside and managed my goal of 30 miles. Pacing still features but I feel more like a normal person 

  • Posted

    I agree with both thez posts,iv been a sufferer for 15 years and its been a long long haul,and you defo have to stay posative and you defo have to more or less deal with it on your own,get to know what you can and cant do and when, do sum cardiovascular work everyday if you can, gentle walk or cycle, but you have to stick to it and out of all the things i have tried and done its only the fresh air & persistently pushing myself to take daily walks that has ever given me any relief from this sh!!e illness,, plus if i stop bread and potatoes for about a week that seems to make a difference to...good luck to all you sufferers .and remember it might not feel like it But there is always someone worse off,, so keep posative and live the best life you can whilst coping with it,,,
  • Posted

    from ME association:

    http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/

    Emis Moderator comment: I have removed the article that was pasted in full here as it may breach other website's copyright. Please do not paste whole articles in posts. You can add a link to it and this will be approved as long as it complies with rules for posting links. If it doesn't then links can be exchanged via the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Posted

      Thank you Cecilia for this post, its good to know there are people out there, who have our Interests at heart, fighting politically for us

      B

  • Posted

    That's such an encouraging reply from Bubbles! It's exactly on the money. I've had this 'orrible! illness for over 28 years now and tried everything, Perrin technique, gradual exercise, hypnotherapy, Rational Emotive therapy,and Acupuncture recently,Osteopathy. Each and everyone has benefits, but somehow I think it depends on how it affects each individual. We are all the same....yet different, but like Bubbles says the only thing to do is keep positive and live the best life we can with what cards we've got. Some days that's REALLY hard I know, but like Bubbles said there's always someone else worse off than you, and there are tree's and birds, and the sky is the same sky over all of us.

    Sending thoughts to all fellow sufferers.

    Yvonne

  • Posted

    Hi Annie,

    Thankyou re: A symptom free day, that would be fantastic! Sadly no here : )

    Re: CBT and pacing, I think If we could all go to a health farm, be fed with the best food, have as much external stimulation as possible taken away, learn relaxation, be given any vitamin supplements we may need, have hydrotherapy for our muscles, etc etc etc then we may meet that elusive baseline. And from what I hear, you have to reach that before pacing. Thus, I feel that for many of us with this, the answer Isn't that simple. Also, the statistics come from where? At my cfs/me clinic, I am a trial for this regime of CBT and pacing. I have my questionnaires to fill in as I've been under their care 12 months. Have I found It useful? Yes. Do I feel anywhere near a baseline, not at all. Do I think CBT and pacing works? Not thus far and this, not surprisingly, is not a question on the questionnaire. People who drop out before the end of thr trial aren't included,, anyone whose bloods aren't "normal" (I know someone taken off the programme until their iron was back to normal) those who die before completion, only those who answer to the end. Statistics are always fraught with problems, this result isnt a surprise given its the cheapest option available? But, my clinic use mindfulness and relaxation as well, neither are CBT or pacing! Are they included in the questionnaires? Is my nurse's empathy included? Is the fact that my symptoms have changed, my rest pattern changed, the family dynamic changed, the fact I rely on others more since a year ago included? Nope!

    Just my experience in the trials of CBT and pacing. Sadly also, is for every story of someone getting "better" from this and many do, many from seemingly nowhere, the prressure is on us all to push ourselves harder to do the same. Do you know that even though anyone can get cs/me there is still an idea that we are all perfectionistic, high achieving, extremely physically active individuals before this? And thus find it harder to deal with? Just adding that to the debate this morning : )

    B

  • Posted

    Hi Annie,

    my heart sank into my boots when my husband reported he'd heard this on the radio this morning.  I've been working really hard recently to get people around me to get their heads round this illness and frankly this sort of thing just does not help. 

    I think one of the problems is this name - Chronic Fatigue Syndrome - because for the last five years or so fatigue has not actually been my main problem.  Instead, while in good spells I am able to walk for half an hour a day, I still have to cope with myriad other symptoms which make normal life either difficult or impossible.  Such as pain, inflammation, neuralgia, IIBS, bleeding, internal herpes-like symptoms, allergies, etc etc etc.  I have had this condition, with its multifaceted symptoms, for 35 years now and sometimes fatigue is and sometimes is not the main problem.  Even my GPs who have not up until now been the most supportive, realize that this is a multifaceted problem.  So I think we need a new name which will make it less likely for those without experience of the condition to grasp its true nature.  Hopefully that make make it less likely that researchers will focus on one aspect of it and claim they have a 'cure' if they discover a method of temporarily combating one symptom.

    Yours resignedly,

    Mo

  • Posted

    Hi Annie.  think you'll get  a range of diverse responses to this one, so hopefully you won't be discouraged. ME - it's causes,  symptoms, severity & individual expression vary massively.

     my experience of the NHS  ME management program (group CBT & GET)  set me back 6 months easily. i didn't recover my previous  baseline.   i acquired new symptoms on that program  that still  persits and have progressed.  

    the program was 'pitched' to push us. we were all in different 'places/stages' but general speaking, the program was a 'one size' fits all approach. some  of us were  'desperate' for help/recovery  so were eager, hopeful, & trusting. we followed the 'expert'  instructions to the 'T'.  the PR (ambience) of that program was: '' that this intervention works if you engage fully & persist with it''.  those of us who were of the v. 'conscientious/trusting the experts' mind bent i.e. more wishing than sensible dropped out midway or earlier due to relapses.  i relpased badly. 

    in the particular ME mangement course i understook we were told was part of a 'Meta  Analysis Study'.   we had to complete loads of  daily records of activities etc. however, a number of the participants  were filling in their 'records' retrospectively.  the ''paper work'' seemed THE priority on the program.

    having studied to MSc/PhD level (i didn't complete my PhD due to ME) the ''methodology'' of information collection/collation  etc. seemed totally ad hoc & was in my opinion very very amateurish. not the way i was trained to do research, collect/collate stats. etc. in fact in my research modules we were given examples of ''how not to do research'' - the methodology employed fitted the ''not the  way to do it''

    i was devastated when i got worse rather than better.  i had a number of discussions with the Clinical Psycholgist who was in charge of the program. she apologised & said she'd amend the program taking my comments into consideration. she actually did amend the 'ambience' from one of:  ''if you push hard enough''  approach, to one of  taking individual expression of the illness more seriously. that was some time ago. i do hope the program has continued to improve.

    i have done 1-1 CBT. unfortunately, it's not something that i can engage v. well with. the body/exhaustion pain gets in the way. think there are horses for courase. CBT isn't the one for me. however, i do know ppl that it does help with their symptom/pain management.  btw, i have tried almost all the other non-conventional approaches/programs on the market. almost all have helped to some degree or other, but none has provided a sustained response.  then again, i can't afford to have these interventions on an  ongoing basis. 

    i think optimizing positivity is important, but can become exhausting too.  good PACING is SOOOOOOOOOOOOO  important for me. when i don't do it, the payback is awful.

    i wish u the best  luck possible with your journey. it's such an individual expereince. read the research. 

    C

  • Posted

    Hi Anna, I saw a brief interview on the Victoria Derbyshire show this morning, there were 3 people speaking (wish i'd written their names down now but i'm sure the info will be on the internet somewhere later today).

    There was a CFS sufferer of two years, a lady talking on behalf of Action ME and a gentleman involved in promoting or proving CBT & GET.

    All three of them were saying similar things, that some may find it helpful, but even the gentleman in favour of it outrightly state that CBT & GET are "not a magic cure" for this illness.  He also added that there was a lot more to it than "positive thinking" and "getting exercise".  All three seemed very disappointed with the media coverage, they all seemed to be in agreeance that what is stated today in the papers (which I have not seen but can only assume is the same as what you heard on the radio) is taken out of context and poorly reported and not helpful to sufferers.

    It's such a shame that the correct version of events gets so little coverage as so many more people will believe what the media are saying, but hats off to Victoria Derbyshire for taking what little time she obviously had to deal with this coverage so quickly.  I don't know whether this was pre-planned or a last minute thing as I only saw it by chance, but at least the show highlighted that this is not a cure and not necessarily for everyone. 

    By the time I was even considered for CBT, i was already improved and exercising more, when we went through my daily routine (which is regular but i still have days where i can't function well or do much) they didn't see much room for improvement in what i was currently doing.  I still firmly believe this is more down to the fact that I now have a helpful and supportive partner more than anything I have done for myself and I have also found Amitriptyline somewhat helpful as I didn't sleep well at all before. 

    if someone hasn't tried this therapy and it's something they want to try, anything is worth a go (if and only if physically possible of course!), but as one of the experts said themselves on tv today it is no magic cure, just possibly helpful.

    • Posted

      Thankyou Kirsty for reporting this on here. I can't watch television and rely on people to fill me in on such news. On the plus the condition is In the news I guess? Pushing it out of the shadows of being an invisible illness, hopefully.

      B

    • Posted

      Hi Beverley, thats ok, i'm always happy to share anything I hear when I have the energy. I did actually email them at the bbc to thank them for taking the time to help set the record straight too, might as well encourage and show appreciation for good thorough journalism while its happening smile
    • Posted

      Hi Kirsty,

      Every little helps as they say. CFS/ME is certainly getting publicity at present that's for sure! CBT has a place in this world but as a joint "cure" with GET for this condition? I'd like to meet those who felt better because, so far I've not seen anyone come forward, have you?

      Blpp

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