BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

Does anyone have access to their ‘Therapy and Symptom Management Guide’? Their website says it’s currently under review, and they’ve put up ‘Post-Viral Fatigue - A Guide to Management’ which is dated May 2020. So they’re definitely updating their content. Does anyone still have access to their old content for comparison?

 

Does BACME have a separate policy and position on other "primary fatigue conditions", which they mention in

Our Mission is to support health care professionals to develop and deliver clinically effective and holistically informed practice for children, young people and adults with ME/CFS and primary fatigue conditions.

or do they simply lump everything?

 

A Google search gives this link https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf which currently returns a 404 Not Found error, so it was there but they've removed it.

But this link, https://www.southtees.nhs.uk/content/uploads/BACME-Guide-5815.pdf, gives access to the document, although there is no indication how old, or otherwise, it is. I've also attached the document to this post as well.

 

Thanks! I had found the error page, but don’t have the skills to go find it elsewhere! Excellent work!

 

They reject the "deconditioning model of ME/CFS as a primary cause for the condition".

However GET was based on the belief that deconditioning was the cause of symptoms. Graded activity programs is how you treat deconditioning.

Presumably this means that GET is either intended to treat nebulous things like fear avoidance or treat deconditioning without pretending that patients can be cured in this way.

Now the problem with treating things like fear avoidance is that there's no evidence this is even real (in the sense that patients unnecessarily avoid activities out of an unjustified fear). It's something the CBT enthusiasts made up.

As for GET to improve fitness, the data I'm aware of points towards GET being ineffective for this purpose.

 

From Action for ME:

https://www.actionforme.org.uk/news...rMzVS3FEda79KSKN1oPnV0PbddsjaERYRmxqY9D6vylEM

 

As to why GET doesn't work, I'm not sure. My impression is that exertion, especially if repeated, causes a rapid or slow build up of exertion intolerance. A gradual increase in activity doesn't seem to prevent this. It just means it happens more slowly.

GET would work if patients consistently operated well below their sustainable activity levels or if it treated a key problem. That it doesn't work means we exclude both of these possibilities.

 

Yes. Shape shifting. The way so many powerful people and organisations do when it finally starts to dawn on them the false realities they have been pushing may be coming unstuck. Can the own up to that? No, of course not, so they instead seek to convince everyone (themselves especially) that they have been on top of it all along. You see it everywhere.

 

hmm, they still link to the awful BACME management guide on their website
(even though the link no longer works)

https://www.actionforme.org.uk/support-others/for-healthcare-professionals/treatment-and-management/

 

it's from 2015

see https://worcsmegroup.weebly.com/blog/-new-clinical-guide-for-cfsme-healthcare-professionals

eta:

 

Here is a link to the BACME guide from May 3rd 2019:

https://web.archive.org/web/2019050.../BACME Therapy & Symptom Management Guide.pdf

 

I'm pretty sure they did an updated treatment guide, didn't they? I saw one being shared by Robin Brown. It preceded this position statement.

 

I think that's the same one (ie from 2015).

you might be thinking of the one for Severe ME(?)
https://www.s4me.info/threads/new-bacme-guidelines-for-severe-me.7900/

 

it's started:

Leeds
CFS / ME Service

https://www.leedsandyorkpft.nhs.uk/our-services/cfs-me-service/

 

YES. This is the point, which needs to be reiterated again and again and again.

What BACME [edited to correct acronym] needs to explain is why they are rejecting the inflexible approach? Do they acknowledge the problems with the RCTs? Do they accept the validity of the evidence of harms? What is the evidence upon which the new watered down therapies are based?

It is certainly a step forward if they are promoting less harmful therapies. But it is also harmful to suggest that there is evidence that any therapies are effective. There is none. And promoting ineffective therapies is always harmful (regardless of whether or not they cause direct harms) because 1) it wastes money which could be spent of research and services which actually improve the quality of patients lives, and 2) it reduces the perception of the need to fund high-quality research to develop diagnostics tests and treatments.

Remember in the webinar with Lynne Turner-Stokes, Trish Greenhalgh said they would be trying to align the longcovid Guideline with the revised ME/CFS Guideline to make sure there weren’t any contradictions (see thread).

 

For anyone who missed it:
https://twitter.com/user/status/1306534615276978178

No response from SW of course.

 

Trying and doing are different things. She hasn't seen our guideline yet. Presumably, as others have said, she's waiting for the consultation draft.

This has preempted all of that, and as the link upthread from the Leeds clinic shows, the BACME statement seems to be about getting long COVID patients into NHS 'CFS/ME' clinics.

There will be a lot of funding going to whoever offers services dealing with long COVID patients. Sadly, that's a much more topical illness than ours, according to the press.

 

Yes, my error. I meant that was the date it was saved to IA. So it's dated from before that date which as you say is likely 2015.

 

Call me an old cynic – and I appreciate that you know a lot more about this than me, Adam – but I would be surprised if the eminent members of the BPS lobby haven’t got a pretty good idea of what the new Guideline is going to look like. They seem to have a pretty strong omertà, and the pro CBT/GET members may feel they have less to lose by leaking info than the others. I’m also imagining a lot of “you might think that, I couldn’t possibly comment” type conversations going on.