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

This is especially good to know:

 

I'm now pretty convinced that you're right on this. Have heard from someone else who ended up much worse after following the advice from that clinic, and they were moderate/severe initially. They were very scathing of the way they were 'treated'.

 

I'm a little late to noticing this new BACME position paper, but a few brief comments:

BACME should be challenged to explain what they understand to be "the biological aspects of ME/CFS" - I'd expect a vague statement about abnormal stress responses or similar such handwaving. They do not describe how an understanding of the current biomedical literature would inform the practice of CBT.

This is mere casuistry - note the "inflexible" and "primary" qualifiers. Deconditioning was never considered to be primary. The psychosomatic model held that ME was the perpetuation of the symptoms of an initial insult or trigger by psychological factors, including the patient's false illness attributions and beliefs - a psychoneurosis, to use the old-fashioned word. Deconditioning was always seen by the proponents of these theories as secondary to the psychosomatic process.

Impossible. Until group-level differences between ME patients and healthy controls are clearly delineated - until there is a reliable biomarker - the individualisation of care is meaningless with regard to the "underlying biological processes". I think that what they really mean here is that some patients may need more tailored psychological or physiotherapy-based interventions, but there is no good evidence for any of these to begin with.

 

Indeed.
BACME supports the delivery of flexible, person specific programmes that take into account the underlying biological processes.

Impossible.

This isn't even the newly discovered motte and bailey fallacy, just plain old talking out of the backside.
There is this thing in chess where you have to move a piece to stop being got at by the other person, knowing that it will allow them to get at something else. It must feel a bit like that I think.

 

now the NICE guidelines are out it is pretty obvious that BACME had some kind of preview of the contents.

 

From the quick response from SMC too, I would suspect a briefing prior to guidelines release

 

I have no doubt that those of BPS leaning were feeding back to their colleagues throughout the process, and the BPSers probably trying to exert influence the other way where they could.

 

I agree. I'd be flat out astonished if they werent.

 

re BACMEs use of 'cause' (deconditioning model).

I found this slide from NHS Oxford on the 3 Ps which seems to illustrate BACMEs approach.

 

Do you notice most of the things listed are patient blaming. I don't think NHS Oxford should help these patients, they've obviously brought it on themselves

 

If anyone has the time/energy, I think it might worthwhile to go over the guidelines and make sure that this 3Ps model cannot be applied to them otherwise we could be looking at more of the same treatment, just worded slightly differently.

 

I used to get very frustrated when Charles Shepherd used to use these 3Ps when explaining ME, even though he was using different factors, not deconditioning.
No competent doctor would explain cancer in this way.

 

I wasn't aware he was a boardmember.

https://twitter.com/user/status/1327546312762515457

 

hmm
https://www.nbt.nhs.uk/our-services...romeme-service/cfsme-rehabilitation-checklist

eta:
https://www.nbt.nhs.uk/our-services...ndromeme-service/chronic-fatigue-syndromeme-3

 

List of current BACME board members:

https://www.bacme.info/sites/bacme.info/files/BACME Board Members Oct 2020.pdf

 

also works for Hazel O'Dowd
https://www.nbt.nhs.uk/our-services/a-z-services/pain-clinic/pain-clinic-team