CBT

I don't know what CBT is.  However, I definitely agree with you when you wrote:

" I have concluded now that the only thing that really helps to relieve these debilitating symptoms is rest, rest and boring rest. Rest until you feel strong enough to do a little something and rest again."  Everything sets off my symptoms!  Recent physical therapy, which I need because of a muscular/skeletal problem, has me absolutely dragging.  So, yesterday and today have been total "down days."

There's been quite a lot written about how misealding claims about the benefits of CBT have been made by researchers conducting poor quality research and then spinning their results.

The Stat News piece 'Bad science misled millions with chronic fatigue syndrome' is probably a good starting place. It links to work by David Tuller.

The Canary has a piece that look more of the politics, and links to other work to, it is titled 'The results they really didn’t want you to see: key ME/CFS trial data released'.

(I've forgotten the rules on linking here, but thought maybe I couldn't post direct links?)

I had CBT a few years ago and found it really helpful with coming to terms with having with M.E. and keeping a positive frame of mind. It didn't help my physical symptoms at all but I feel more accepting of my illness now. I enjoy my good days and just accept the bad ones as my body telling me I've done too much but I'll pick up again in time. I really liked my therapist but he was a specialist in M.E./CFS on a trial for the condition I took part in so he was maybe more understanding of the condition.

Hi , we have been waiting for CBT help , unfortunately we had to have a assessment with a CAHMS first and the woman didn't believe in CFS / ME and classed my child as having bereavement and only needs counciling ! Shame she doesn't have to watch her 14 year old slipping into endless sleep and pain that you can't help ! As long as your CBT therapist believes than it really is there to help / aid and manage x Good Luck 

I have been helped a lot by CBT. I also changed my diet after learning I have celiacs; the CBT is more effective now that I am eating lots of green veggies and some meat.  No processed food.  

Getting well is not about simply doing one thing, it is about taking fuller care of ourselves. CBT helps to find the deep ruts that keep us stuck.  Picture a pot hole in the road.  You can drive through it and make it worse and deeper, or you can drive around it. The hole is still there, but it does not have to effect you in a negitive way.  Hope that makes sense. 

It is also possible that your CBT therapist is not that good at her/his job, but healing is not over night, it requires taking what you learned in session and practicing it till it becomes a habit like brushing your teeth, it is about changing how you think and it takes time.  Read books on self care and when you catch yourself thinking in unhelpful ways, reflect on what you have learned and try to re-think it. 

CBT is about learning to let go of negetive patterns.  We needs to eat better; getting more nutrition helps the brain process, exercise keeps your body stimulated . . . Getting well is hard work and takes a lot of time, concentration and energy, it will not come in three sessions and it wont work at all if you don't work it.

Hang in there and keep working it cuz you are worth it!  

i tried CBT for a few years. It was helpful to talk to someone regarding my illness. But any good therapist would have helped me. The actual therapy didn't do much for me. I think, at best, CBT can be a good coping tool, on a par with other "tools" like meditation. Unfortunately, the NHS seems to be recommending CBT and GET (Graded Exercise Therapy) as the two methods that can improve ME/CFS. This is being largely debunked in the medical community. You are very wise in recognizing rest as the key to dealing with this illness. Don't force it and try to push through the fatigue. Pace yourself and stay within your energy envelope. Eventually, the medical community will catch up to what we, as patients, already know.

EXACTLY Olivetree; couldn't have said it any better myself.  I, too, can't see how CBT could/can help us, as it's NOT a "condition of thoughts that makes us ill", but a body that just Can't Cope with Stress, fatigue or exercise.  For some reason most medical "experts" that I have come across still seem to think that it is our body's way of coping with "unwanted mental issues", and if we "get out of our present situation/change our way/s of   thinking" then ALL will  be  good, and we can/will get on with a Normal life..............funny hey????  NOT.....

?As to your  frustration,, YES to that  as well,  for there are days that I get sooooo frustrated with my life, and lack of Understanding, that I could scream (if my jaw/mouth etc) would let me; so next best thing is this site that lets us "prattle/rant"...............keep on prattling and I for one will read and join in when in the Need too.                      Bron

Hi I a totally agree with you on many points you have made If you have accepted you have m e I see little point in going over things to people who have no idea what the condition is however I still see a chronic fatigue support worker through a m e clinic on nhs which I find beneficial I can get things off my chest so to speak as she understands the condition much better even if I can't make my appointment I can just ring maybe try getting a appointment to m e clinic might be better good luck