Graduated Exercise Therapy and CBT removed from NICE guidelines (draft)

sleepytrex

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Sep 6, 2021
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DX CFS
Diagnosis
10/2016
Excellent news in my opinion. I was encouraged to increase my physical output each week by the physio at my CFS/ME clinic, even if I was experiencing adverse effects. This led to one of the biggest crashes I have had since falling ill with ME/fibro. They have also removed CBT as a form of treatment, something which personally I found useless.
 
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Hi sleepy T-Rex, I'm interested in your input, but am thoroughly confused!

I still see in the new (April) version of the NICE guidelines and I still see exercise and CBT (& ACT). Or am I not reading them right?
I'm also not sure if you're talking specifically about "graduated exercise therapy" and what you mean by "draft" in the title.
(I can't imagine them changing them again already, as I've read criticism that they are pretty slow.)

Recent studies and reviews show that exercise and CBT help a lot of people with FM, more than many other treatments.
If the guidelines don't recommend a treatment, it's harder to get them via the NHS, so people whom they help will find it harder to get them.
Considering that we are all very different in symptoms and how we have success treating them, isn't a broad spectrum sensible?
Personally I also have had many types of physiotherapy that harmed and CBT that cdnt help me;
but after trying out a lot, I have found therapists, incl. CBT & learnt self-treatments that are helping me.
The problem with exercise is that it needs to be gentle & in short stints & with careful progress, so if you are arguing that "Graduated Exercise Therapy" is 'too hard' for a lot of us, that may be right, but the appropriate reaction would be to tone it down, not stop it's funding.
The problem with CBT is that therapists need to have experience with pain management and that the the chemistry must be right, so we need the opportunity to try different therapists. (In Germany we can try up to 5 sessions with one, and then change, not sure how often.)

And which types of treatment would you prefer encouraged by NICE?
The main outcry was caused by NICE removing opioids (at least for new prescriptions), tough for some, but in line what a lot of us think here.
I do know that FMA UK is critical of the fact that NICE is narrowing down treatments and ignoring EULAR and the evidence of good studies...
 
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