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

dave30th said:

Trial By Error: Interview with Jonathan Edwards about "Therapy Guide" from British Association of Clinicians in ME/CFS | Virology Blog​

By David Tuller, DrPH The British Association of Clinicians in ME/CFS, known as BACME, defines itself as “a multidisciplinary organisation providing informa ...
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Very good interview, thank you both.
 
Concentric_Spiral said:
Was wondering more about guiding therapists to be as understanding and supportive as possible with clients who have ME/CFS.
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I think people might have been caught in the semantics.

If they really want to understand, I would suggest spending some time here with a very open mind about perhaps being wrong about a lot.

The three factsheets are a good starting point for basic knowledge, but are not supposed to be guides for clinicians.
 
Utsikt said:
I think people might have been caught in the semantics.

If they really want to understand, I would suggest spending some time here with a very open mind about perhaps being wrong about a lot.

The three factsheets are a good starting point for basic knowledge, but are not supposed to be guides for clinicians.
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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.
 
Concentric_Spiral said:
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.
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Ah, for psychotherapists? There’s nothing available that I know of yet but @Joan Crawford (co-author of this open letter) has been working on guidelines for the british psychological society.
More info in this thread
https://www.s4me.info/threads/uk-br...ce-on-me-cfs-deadline-9th-october-2024.39995/
 
I get why people are scared of saying they don’t know. It can be hard accepting there are no answers. It can be difficult for your own ego to say it when people come to you for answers as the expert in a field. But it’s a necessary step on the path to finding those answers. Not knowing is how we gain knowledge and learn. And it feels like we need a lot more people in the world of ME/CFS to admit they don’t know, from those running clinics to those running charities and advocacy groups.
 
Concentric_Spiral said:
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.
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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.
 
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