United Kingdom: BACME Guidelines for Severe ME 2019

New BACME guidelines for severe ME

"
The Sussex ME Society works for the nearly 5,000 people in the county affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome(CFS) including many people from the LGBT communities here in Brighton and Hove.

THE charity is launching new guidelines for doctors that are caring for those who are most severely affected by the condition.

The document has been produced by the British Association for Chronic Fatigue Syndrome/ME (BACME) and includes experienced clinicians involved in the diagnosis and management of patients with severe ME."
https://www.gscene.com/news/new-doctors-guidelines-for-severe-me/

https://measussex.org.uk/doctors-guidelines-for-severe-me-january/

haven't found the actual guidelines yet!

eta: given Colin Bartons track record and BACMEs I'm sure we are all concerned.
eta2: this is a bit weird tho, why are they the ones launching it?

 

The bacme published some severe ME guidance as far as a couple of years back but didn’t put them on their site for some reason. As a severe I really dont want that group launching guidelines on us. There’s been debate on them before maybe on PR, a mixed bag from what I recall.

 

https://www.leedsandyorkpft.nhs.uk/...ation-for-cfs-me-shared-clinical-practice.pdf

This is the link you posted on PR @Sly Saint ;-p

Was this an early draft ?

 

Well that sent a chill down my spine, possibly because i don’t have enough energy for fear or anger.

When i read it i thought i was reading some old guidelines but the link on their website took me to this too. So this ‘is’ the current guidelines??

And Allistair Miller is now retired from ME practice?

Please tell me i’m completely wrong and my brain fog is confusing me.

 

Phew i just clicked on a link saying ‘to read guidelines’ and that page popped up. My chill just warmed; a little.

 

Thanks for always keeping us up to date on BACME @Sly Saint .

They are a group that prefers to work from the shadows with no transparency. That alone is reason to have concern.

 

Now this has to be trolling. Is being a jerk a requirement to work in psychosomatic medicine? Who funds this fake charity?

 

no idea; it says version 1, so maybe this is version 2? still haven't found it tho'

There are several threads on the Sussex and Kent ME Society here (search sussex in thread title).

but as AfME also back BACME
"The British Association for CFS/M.E. (BACME) also publishes a therapy and symptom management guide. This practical clinical treatment summary incorporates existing tools and methodologies from specialists who work with adults and children who have M.E., and offers a consensus approach to broader treatment based on clinician expertise, patient experience and the best available evidence. It's free to download at BACME's website." (On AfME website)

I'm surprised that they are not the ones 'launching' it.

Do the MEA know anything?
@Russell Fleming

on the article it says
"The guidelines are available by calling 01273 674828"

anyone fancy giving them a ring?

eta: it just occurred to me that as BACME were previously closely aligned to AYME (there were also some financial ties) maybe (now AYME no longer exist, in name anyway) they (BACME) have joined up with the Sussex ME Society as a 'good fit'.

 

Just sent this email,

I'm going to err on the side of caution and not hold my breath until I receive it.

 

There are no valid reasons to keep medical guidelines a secret. It would show awareness that the material is problematic, which will create all sorts of legal implications in the future. Keep the pressure on, this is good.

Surely the clinics have such material as well? Probably in the same file cabinet as the "there is no disease" Christmas pamphlet. Definitely worth making requests for any and all material used in practice. There are probably policy guides used at the higher levels as well, although it will definitely take many FOI requests to get through it all.

 

Bleurgh.

 

Well, I need to wind back my cynicism somewhat as it's just been sent to me. Not read it yet so can't make any comment about the content.

 

I have read most of it; as @Trish says some of it sounds reasonable but the underlying tone seems to be very much to do with a combination of deconditioning, and Mayo clinics approach (ie seeing all symptoms as 'allergy type intolerances') combined with fear avoidance.

bits like this

are dangerous imo, as surely it should be up to the patient to decide whether or not aids are still necessary.

I also have concerns with:
"
BACME Severely Affected Working Group contributors

Ms Mary Jane Willows, Chief Executive AYME and BACME executive"

and
"We would also like to acknowledge and thank additional contributions/feedback from :

Prof Esther Crawley, University of Bristol
Dr Hazel O’Dowd, Bristol CFS/ME Service"

@Naomi10 given your past/present experience, what is your opinion of this?

 

Re paediatric categorisation above for "severe" as being ‘effectively housebound’ and the most recent paper in this thread where " severe" children attend school????
It would be good to have a consistency in being awful,but even this seems too much to ask for.
https://www.s4me.info/threads/psych...e-with-severe-cfs-me-2018-chalder-et-al.7875/