The harm of poor management or repeated over exertion needs to be emphasised and I'd take the opportunity to change the name from CFS and a fatigue focus to SEID.
I don't disagree on this.
There is exactly zero research on this topic, other than what is either anecdotal, or self-selecting patient surveys however. Which will _NOT_ make it into the guidelines, unless the panel is of a wholly unexpected composition.
Others have mentioned CBT and GET should be removed.
The problem with this is the guidelines say that treatment should be 'patient focussed' and 'ability to refuse any treatment' or similar.
This means you have to get past not only the hump of 'maybe harmful' to 'the average doctor and patient will be mislead and cause harm'.
In reality, there are effects not captured in the guidelines.
Someone turns up at their GP feeling crap, and gets a diagnosis of CFS. They are not at this point at a place where they can debate NICE guideline criteria.
I was surprised to see the first result "chronic fatigue syndrome uk" is a reasonable charity based page.
However, it does have 'ad' next to it.
http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx - popped up as expected as the first non-ad link.
Which contains such gems as
'Most people with CFS get better over time, although some people don't make a full recovery' .
(it does however link below that to the me association website.).
On the treatment page, it contains:
CBT is a talking treatment that can help you manage CFS/ME by changing the way you think and behave.
It can help you to:
- accept your diagnosis
- feel more in control of your symptoms
- challenge feelings that could prevent your symptoms improving
- gain a better understanding of how your behaviour can affect the condition
Your CBT therapist will ideally have experience of dealing with CFS/ME and treatment will be offered on a one-to-one basis.
Using CBT doesn't mean CFS/ME is considered to be a psychological condition. It's used to treat a variety of long-term conditions.
Which notably fails to explain that this is NOT vanilla CBT, but 'illness denying' CBT.