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
Yvonne72736 anna65476
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Yvonne
wknight anna65476
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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
Bubbles61 anna65476
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cecilia87827 anna65476
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http://www.meassociation.org.uk/2015/10/press-release-me-association-pace-trial-treatments-offer-hope-for-chronic-fatigue-syndrome-28-october-2015/
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Beverley_01 cecilia87827
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Yvonne72736 anna65476
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Sending thoughts to all fellow sufferers.
Yvonne
Beverley_01 anna65476
Posted
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 : )
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Mo323232 anna65476
Posted
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
caitlin39841 anna65476
Posted
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
Guest anna65476
Posted
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.
Beverley_01 Guest
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Guest Beverley_01
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Beverley_01 Guest
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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