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

PhysiosforME said:
here's the direct link to our blog page https://www.physiosforme.com/post/bacme-position-paper-our-statement
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Thank you. I appreciate your emphasis on the need for evidence to back up the BACME statements. The shouldn't be allowed to get away with making unevidenced statements about treatment.

I fear that will continue, even with the new NICE guideline. If that includes any element of 'therapy', whether behavioural management or psychological 'support' or adjunct, that would leave the door open to the psych and other therapists going on doing what they do now and claiming they are using individualised person centred care by specialists in treating ME, or something equally unevidenced.
 
Invisible Woman said:
I wonder if that's the difference - if you are at the more severe end of things he assumes you should be able to push your way through?
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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 does not support the use of inflexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS.
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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.
BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model.
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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.
BACME supports the delivery of flexible, person specific programmes that take into account the underlying biological processes.
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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.
 
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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.
 
Sly Saint said:
now the NICE guidelines are out it is pretty obvious that BACME had some kind of preview of the contents.
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I agree. It's plain as day they knew in advance and geared their statement accordingly.

@adambeyoncelowe, @Keela Too, @saranbonser is the NICE committee aware of this? If so I wonder if they can make a direct approach to BACME and ask for the source of their information. I know you won't be able to discuss whatever is done here. Just alerting you for information.
 
Trish said:
I agree. It's plain as day they knew in advance and geared their statement accordingly.

@adambeyoncelowe, @Keela Too, @saranbonser is the NICE committee aware of this? If so I wonder if they can make a direct approach to BACME and ask for the source of their information. I know you won't be able to discuss whatever is done here. Just alerting you for information.
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From the quick response from SMC too, I would suspect a briefing prior to guidelines release
 
Sly Saint said:
re BACMEs use of 'cause' (deconditioning model).

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

View attachment 12507
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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.
 
Sly Saint said:
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.
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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.
 
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