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

[Suffolkres]

Jo and David. BACME is a charity.
Last year it's income was reported at £5000 approx.
This year over £13,000...success or what? A little help from MEA Eleros.
Showcasing their wares.

 

[hotblack]

@Suffolkres, is this from Companies House or the Charities Commission?

Looks like the Charities Commission

 

[Peter T]

Looks like the Charities Commission

Yes it was the Charity Commission (BACME entry -
https://register-of-charities.chari...rityDetailsPortlet_organisationNumber=5150906 )

Note - most recently its income seems to be exclusively membership and conference fees.

 

[AliceLily]

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 ...

virology.ws

Very good interview, thank you both.

 

[Suffolkres]

Companies House I think. Will check.

 

[Suffolkres]

@Suffolkres, is this from Companies House or the Charities Commission?

Charities Commission

 

[dave30th]

. Maybe we shall see on Monday.

what is happening on Monday?

 

[Concentric_Spiral]

Are there good guidelines for therapists who have clients with ME/CFS out there?

 

[Chandelier]

what is happening on Monday?

Post in thread 'An Open Letter to BACME re ME/CFS Guide to Therapy 2025'

Today at 4:30 PM

What's on Monday? (Sorry if I've missed that!)

A ForwardME meeting with DHSC rep.

• Jonathan Edwards

• 

 

[Jonathan Edwards]

Are there good guidelines for therapists who have clients with ME/CFS out there?

Probably not since there aren't any therapies.

 

[MrMagoo]

Are there good guidelines for therapists who have clients with ME/CFS out there?

I’ve just written one - see below

“Stop meddling and back off - you know nothing and you’re not helping”

 

[dratalanta]

The NICE guideline covers “diagnosis and management”. What additional guidance do BACME think is needed?

 

[Concentric_Spiral]

Probably not since there aren't any therapies.

Was wondering more about guiding therapists to be as understanding and supportive as possible with clients who have ME/CFS.

 

[Concentric_Spiral]

I’ve just written one - see below

“Stop meddling and back off - you know nothing and you’re not helping”

Sure, they can't cure ME/CFS. But hopefully they can be as understanding and supportive as possible.

 

[Utsikt]

Was wondering more about guiding therapists to be as understanding and supportive as possible with clients who have ME/CFS.

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.

 

[Concentric_Spiral]

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.

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.

 

[hotblack]

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.

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/

 

[Concentric_Spiral]

Ah, for psychotherapists? Here’s nothing available that I know of yet but @Joan Crawford 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/

Ah yes I meant psychotherapists. Thanks for the thread.

 

[hotblack]

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.