UK BACME ME/CFS Guide to Therapy 2025

[Kitty]

now we have an 'its called rehab so it must make people better not harm them and make them worse' fallacy being dog-whistled

They need to be asked how many of the people they rehabbed maintained the improvements at six, 12 and 24 months. (Presumably they know this; people need follow-up, just as they say in their document.)

And how many people who completed their therapy returned to work, study, or whatever they were doing before they became ill, and maintained it as six, 12 and 24 months.

And how many of the people they rehabbed saw no improvement.

And how many got worse.

Until we've got that data, no one can decide whether the approach has merit. It's the absolute minimum evidence needed.

 

[MrMagoo]

They need to be asked how many of the people they rehabbed maintained the improvements at six, 12 and 24 months. (Presumably they know this; people need follow-up, just as they say in their document.)

And how many people who completed their therapy returned to work, study, or whatever they were doing before they became ill, and maintained it as six, 12 and 24 months.

And how many of the people they rehabbed saw no improvement.

And how many got worse.

Until we've got that data, no one can decide whether the approach has merit. It's the absolute minimum evidence needed.

Yes and I hope they don’t try and do the Tyson Trap of quoting endless amounts of “how to validate questionnaires” and other non-relevant red herrings.

Does this method work? Show workings.

BACME - should try backing pwME instead.

 

[Ash]

They need to be asked how many of the people they rehabbed maintained the improvements at six, 12 and 24 months. (Presumably they know this; people need follow-up, just as they say in their document.)

And how many people who completed their therapy returned to work, study, or whatever they were doing before they became ill, and maintained it as six, 12 and 24 months.

And how many of the people they rehabbed saw no improvement.

And how many got worse.

Until we've got that data, no one can decide whether the approach has merit. It's the absolute minimum evidence needed.

Yes. It would be

But I think the problem begins before lack of evidence for their practices. They're beginning something that they have no business even attempting.

Where was or is the evidence that what they do is even worth trying to do?

Who has a solid evidentiary basis for treating patients to these lifestyle and behavioural interventions, what scientific principle do they base their perception of a need for this on?

And of less consequence but further along the path, in an environment of artificially limited resources available for patient interaction and limited capacity for the patient themselves, how do they justify their approach over another one?

Perhaps one very much in the same vein, one where all the patients become [insert religious order or whatever new religious movement] and live lives based upon these teachings?

Or a rather different one, where we all get funded to be taken on a group holiday by these therapists are encouraged to drink alcohol (to build up our tolerance) and lounge by a pool, or on the beach to adjust to bright light and loud laughter and life outside our rooms and narrow existence.

Or anything else other than actual medical care.....

 

[Binkie4]

Thanks. The current version is on the BACME website. I don't know whether it's the same one you found.

https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf

Yes, this is the same document I found loaded onto the Sutton hospital website (post #127). They are both dated Aug 21, which is just after the Nice guidelines were due to be released, but were delayed by the RCP kerfuffle, eventually being released late in Oct 2021. So the Bacme material was ready to take over. Sort of "Nature absorbs a vacuum".

Nice guidelines were due to be released in mid August 2021 but were delayed. Bacme guidelines are dated Aug 2021. https://www.meresearch.org.uk/nice-guideline-11th-hour-delay/ I have no idea if the coordination was planned.