An Open Letter to BACME re ME/CFS Guide to Therapy 2025

[Concentric_Spiral]

That does sound exhausting and frustrating!

If they read the three factsheets they should probably be able to get some kind of understanding of accessibility, etc., and understand that any kind of psychosomatic approaches should be avoided.

Other than that, I would maybe try to look for a couple of written accounts of patient testimonies that (importantly) don’t include unfounded claims about pathology etc.

My therapist knew nothing about ME/CFS or LC, and said so, and she let me tell her what I needed. I had digital sessions and when I get worse she offered to let me split up the session and only charge me for the time spent over months (and not the whole hour for every started session). When she made suggestions for things to do she was clear that I had to say if it didn’t fit my circumstances.

I think most of that is just basic human decency and I’m not sure I would have stayed with her if she didn’t do those things. But I recognise that I might have gotten lucky and that shopping around might not be possible or easy.

Thanks!

 

[MrMagoo]

Yeah those documents are amazing! I could use something similar but geared for therapists. It's exhausting trying to explain the psychological landscape of having ME/CFS to a therapist. Not exactly the same as the physical side of things. E.g., what it's like having a syndrome that many people deny exists. What type of things can be helpful/unhelpful, how to make therapy more accessible, etc.

Oh wow yes that is something that’s needed.
I imagine there’s similar scenarios (not necessarily health) say for example if you’re wrongly convicted, or wrongly identified as a bad person on social media or the press. There are loads of scenarios where the majority of society think you’re a liar/delusional and you aren’t, but can’t prove it.