Action for ME have "reworked our treatment and symptom management page" and "updated our pages on GET and CBT"

Text from their Facebook post

Treatment and management page - https://www.actionforme.org.uk/living-with-me/treatment-and-management/

GET and CBT page - https://www.actionforme.org.uk/resources/questions-and-answers/what-are-get-and-cbt/

I'm sure many of us here will find the wording underwhelming - looks like they are still trying to dance around the issues.

 

I would guess they are afraid of the PACErs.
If they really were about patients they would either fold and make room for real patient centered organizations to thrive or stand up to the bullies.

 

If anyone would like to comment on Twitter:
https://twitter.com/user/status/1008716334807633920

 

The blurb does try quite hard to cover all the problems with CBT and GET but I am left wondering in what capacity this advice is really being given. Is this a quasi-governmental advice service toeing the official line? Is it a charity honestly telling patients what it thinks is best advice? It looks so much more like the former and yet maybe it should be the latter.

It seems to try even harder to avoid actually giving anyone's opinion. I can see that charities giving advice may want to avoid upsetting patients and carers desperately trying to make decisions about treatment and therefore not admit 'actually the whole thing is a bloody mess'. But if I were trying to work out what to do following these comments I would end up confused as to whether something was being recommended or not. I think I might feel completely at sea.

If I was asked what to suggest about getting help from health care professionals with how to manage the illness I would probably say:

Studies of specific therapy regimens like CBT and GET suggest that they are useless or worse than useless. Moreover, they suggest that the therapists who use these techniques really do not know what they are doing. Probably the best thing to do is to try to find other people with ME near you and see if they have found someone who has helped them find a good coping strategy. That might be someone in an NHS CFS/ME service unit who actually does understand what people need or it might be someone independent with useful experience.

 

We've been trying to get AfME to understand this point but they refuse to retreat from their "well some of our members say that GET/CBT are of benefit so we must say the same" position.

 

Can you be more explicit, or possibly extend to a Limerick?

 

And no apology for enabling and abetting PACE. Action For ME really should take responsibility for that at this stage.

 

Is this a possible article idea?

 

Who the hell is funding AfME?? Surely not patients???? I am relatively new to the scene but I am learning....but I am confused as to where they are getting their funding from?

 

Sadly, yes. I have spoken to AfME members who ME patients and they seem outraged at the the whole CBT/GET/BPS business.

When you point out the role AfME play, I 've gotten the "oh, I can't be bothered with the politics" response.

 

A lot of newly ill patients get directed to them, and AfME is very pro-active with fund-raising so can attract people unaware of the problems with them.

 

Possibly. But I'm so far behind in all the pieces I should be writing!

 

I have been 'exposed' to the phrase "pacing up" at a pain clinic - whose approach to pain management was along the lines that pain is not important and means nothing, ignore it, drop your medicine and do GET and CBT and back then, there was also a new revolutionary approach to pain management - mindfulness (which nobody at the clinic knew what it was but were promoting it anyway).

There was a sheet with various exercises to do each day for a week (leg lifting, arm lifting, that sort of thing) and one had to write in it how many repetitions they will do each day. At the bottom of the sheet, there was a line with a big title PACING. One was supposed to write there how they will increase repetitions of each exercise the following week.

I took this up with the clinic, saying pacing is not increasing exercise and the word was misleading: increasing exercises is GET, pacing is doing what you can when you can. They claimed their language was perfect, that I was not understanding the word 'pacing' and then, at the end of the debate, they told me triumphantly and as if I was the most stupid person on the planet that increasing exercise really was pacing - "of course it's pacing, pacing up!"

(ETA: missing word)

 

When you are "not bothered with politics" and you are in a field that is very political, you are a tool to be used in politics by whoever wants to use you.

 

Yep. I've lost friends by pointing this out.