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.

 

[Joan Crawford]

I think it would be useful for any of us with professional viewpoints to formulate thoughts on the guide. I am expecting to feed in to the committee effort to critique it. But I am also wondering about the possibility of something beyond that. Maybe the ideal thing would be get a critique from a group of professionals with rehabilitation expertise (I am accredited but did not focus on rehab) to publish something in a journal such as BMJ. There is likely to be resistance but it may be worth a try. Ilora Finlay would be a good person to recruit but she might not want to get involved.

@Jonathan Edwards
@PhysiosforME

I have shared this thread with BPS colleagues to alert them to this publication. Should get a chance personally to take a detailed look towards the weekend. Do keep me in the loop. Thanks.

 

[MrMagoo]

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.....

Oh I’m sorry to break it to you, no they're not thinking about “patients”. The list of priorities are
1. Ensure my organisation looks good
2. Establish ourselves as experts
3. Get public sector cash
4. Sell product on basis of cost savings
5. Get accolades
6. My career/organisation improves off the back of it


It’s not actually anything to do with ME/CFS

 

[Ash]

Oh I’m sorry to break it to you, no they're not thinking about “patients”. The list of priorities are
1. Ensure my organisation looks good
2. Establish ourselves as experts
3. Get public sector cash
4. Sell product on basis of cost savings
5. Get accolades
6. My career/organisation improves off the back of it


It’s not actually anything to do with ME/CFS

We may have noticed this. While many have chosen not to, and those aforementioned could not possibly admit to as much. So for now, for purposes of securing funding for our necessary involvement supporting this project, we remain the patient.

 

[bobbler]

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.

In case it is of use I remember nosing into this one a while back and then looking at the paper that they quote at the very start and seem to base the whole theory on of 'dysregulation@ and the authors list including someone who has an undergraduate or something

https://www.s4me.info/threads/unite...tion-of-clinicians-in-me-cfs.7900/post-416025

 

[Jonathan Edwards]

I don't think we need to question every detail in the document that is so flawed from start to finish.

Oh I don't know. I am going throuh it bullet point by bullet point in the BA airport lounge. Jesus is it weird? I have a thought for most of them so far.

 

[josepdelafuente]

I am going throuh it bullet point by bullet point in the BA airport lounge.

Sounds dreamy!

 

[Trish]

Oh I don't know. I am going throuh it bullet point by bullet point in the BA airport lounge. Jesus is it weird? I have a thought for most of them so far.

I agree, it's full of weirdnesses.

I think the amount of detailed comment we make probably depends on the purpose of any document we produce.

 

[Sasha]

I agree, it's full of weirdnesses.

I think the amount of detailed comment we make probably depends on the purpose of any document we produce.

Generally, the more you say, the less people read, and the easier it is for them to focus on minor points and dodge the big ones. I favour documents that are as short as possible, in general. But I haven't even read the guide, yet.

 

[Utsikt]

Generally, the more you say, the less people read, and the easier it is for them to focus on minor points and dodge the big ones. I favour documents that are as short as possible, in general. But I haven't even read the guide, yet.

Maybe doing both?

One shorter and to the point critique, and then a detailed assessment if they just brush it off?

If this really is their crown jewel, it might be good to demonstrate just how bad absolutely everything in it is.

Or maybe some of the medically trained members could break down the types of mistakes they’ve made, showing that it’s not just about not understanding ME/CFS, but also that they make basic scientific mistakes, don’t understand how the medical system works in general, are completely detached from reality wrt how other conditions are managed, and so on.

Essentially show everyone that the emperor is in fact completely naked.