UK BACME ME/CFS Guide to Therapy 2025

[Mij]

Overview of the therapy

As the remit of the guide is active therapy the rationale for the rehabilitation approach is included. The World Health Organisation has defined rehabilitation as:

"A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides people with the tools they need to attain independence and self-determination.”

The World Health Organisation considers that access to rehabilitation is a human right. The WHO “optimising” approach to rehabilitation can form part of the dialogue with the person with ME/CFS when forging a therapeutic alliance.

"Based on values and goals".

 

[rvallee]

They seem to have missed the fact that pacing up has no evidence base in trials whatever.
The basing in lived experience is pure manipulation.

Also for all its fault, and it has many, the pacing in PACE was about pacing up gradually, not the actual meaning that we patients understand and apply, and the entire message out of PACE was that it was inferior to GET. Which it wasn't anyway.

But this is evidence-based medicine, where no one has ever let a total lack of evidence get in their way.

 

[Jonathan Edwards]

2) gradual symptom-contingent pacing up was tested in PACE and failed.

I had forgotten that. So we had a trial and pacing-up was even less use than GET (if anything).

 

[Utsikt]

I had forgotten that. So we had a trial and pacing-up was even less use than GET (if anything).

I’m going off of what I remember from other people’s comments, but I’m fairly certain it was not fixed increments. I don’t know where to find the protocol to check.

 

[rvallee]

If you manage to do make sense of your body, and it isn’t «doing more will make it better», you’re told that you haven’t actually made sense of your body. Experience is only valid if it corroborates that physician’s beliefs..

Tails they win. Heads we lose. Always and forever.

Fraud is the word for this. All of this is fraudulent.

 

[hotblack]

We shouldn't underestimate the skill needed to produce a document that's complete bollocks from start to finish.

Thanks for that much needed laugh at this

I make the cost somewhere around £10-20M p.a. I think it could be quite a lot more than that but let's be conservative. Over 3-5 years that is £30-100M. Sequence ME is likely to need about £20M over that time period. Which is better value?

The point on cost and returns is definitely one that needs to be made to those commissioning services.

And perhaps that it looks like people are trying to game the system with their own measurements of success as we’ve seen done before.