CBT & GET

In my Reasons For Blog post I mentioned the treatment (or mistreatment) of people with CFS and ME has become a national and world-wide scandal. And it feels that almost every week something else happens to emphasise this.

2 things this week :

1) The #MEinsults timeline that took off on Twitter.

2) The CFS Advisory Committee meeting in the USA

I will just cover (2) in this post.

I didn’t know much about this until I saw a message on twitter. To explain :

The CFSAC are the Chronic Fatigue Syndrome Advisory Committee in the US. They provide advice and recommendations to HHS.gov (the Dept of Health and Human Services) on issues relating to CFS and ME.
They met a few days ago to listen to presentations and submissions from people involved with CFS & ME – including sufferers themselves (or their representatives). One of the recommendations made from a mother of a severely affected sufferer was that use of The Toolkit should be stopped with immediate effect.
I didn’t know what this was. Now I read it I see it is the recommended treatment and uses GET (graded exercise therapy) and CBT (cognitive behavioural therapy).
Just like the UK.
Unbelievably the AC have now decided to continue using the Toolkit despite the impassioned plea against it. Very depressing. There are millions of sufferers in the US and this means no new hope for them.

GET has been described as a type of torture for people who are very ill. For others it ranges from being no use at all to making their condition much worse. And even pushing them from a mild or moderate state (both still very bad) – into the much worse severe or very severe level. There seem to be very few people helped by it, if any. Yet it is still one of the two primary treatments in the UK and USA.
It is scandalous.

CBT is a psychological-based talking treatment – except that it does nothing to treat the condition and therefore has no chance of curing it. Or even improving it. But this is so obvious when it is a psychological treatment being used for a physical illness. And it is still the other of the two main treatments today.

The fact that the CFS Advisory Committee have ignored advice made to them just seems plain stupid. And will just cause further despair for so many.

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