Caregivers' guide by #MEAction

Joh

Joh

Senior Member (Voting Rights)
I've had a quick read through. It looks very good.

But - Section 1 describes going to lots of different doctors and specialists and trying lots of off label treatments and supplements as thought that was the normal procedure for ME.

That does not reflect my experience, nor that of a lot of people in the UK. A much more likely scenario is GP only, with a few basic symptomatic treatments for pain and sleep, or referral to CBT/GET, or IAPT therapists. And no off label treatments allowed to be prescribed by the NHS or NICE.
 
Haven't manage to read it yet.

Trish said:
That does not reflect my experience, nor that of a lot of people in the UK. A much more likely scenario is GP only, with a few basic symptomatic treatments for pain and sleep, or referral to CBT/GET, or IAPT therapists. And no off label treatments allowed to be prescribed by the NHS or NICE.
Click to expand...
I agree and think that's mostly the reality worldwide, I don't even manage to get symptomatic treatment for basics like sleep or pain.

It is encouraged to leave comments in the document directly (I think it only works if you access it through the #MEAction website via the following link, because it's automatically converted on the S4ME website) https://www.meaction.net/caregivers/

or to contribute to the document or provide feedback by emailing to editor@meaction.net
 
This is very confusing: when I click on the original link, I only get a 1-page document. When I go to the website I get 2 pages. Yet the screenshot shows 1/9. ????
 
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