United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

Trish said:
The video is a talk Katie Johnstone gave to the Local ME network.
Edit: correction - the ME Local Network.

I started trying to watch this but the sound quality and my elderly hearing are such that I couldn't follow what she was saying, so I read the YouTube transcript. She picks up key point about problems with BACME's materials, particularly their claim that ME/CFS is caused by the vague term dysregulation. Also their approach to treatment being still the same as before, just with GET adapted to graded activity, with the usual find your baseline then gradually add activities, and their claim that you can overcome sensory sensitivities by gradual exposure to desensitise. And they call PEM a form of fatigue.

Here's her list of references:
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JUst a thought. One note Katie makes is that BACME's literature, specifically this 'guideline' have not been peer reviewed.

How does peer review work? Could eg someone from Workwell, someone from @PhysiosforME , David Putrino etc be asked for their review on this, and then maybe their other literature?
 
bobbler said:
JUst a thought. One note Katie makes is that BACME's literature, specifically this 'guideline' have not been peer reviewed.

How does peer review work? Could eg someone from Workwell, someone from @PhysiosforME , David Putrino etc be asked for their review on this, and then maybe their other literature?
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Then again - if someone can explain, does even a bad peer review 'legitimise' as 'been reviewed' vs 'not been reviewed' without very significant changes having to be made? which seems a terribly flawed system if so.
 
Peer-review in psychosomatics is clearly fundamentally broken, and is clearly not going to be fixed by the current generation in that field.

It is going to require an external intervention imposing adequate standards on them, and monitoring them for some time to ensure they comply.
 
https://bacme.info/event/severe-and-very-severe-me-cfs-workshop/

Upcoming event: Severe and Very Severe ME/CFS workshop

Facilitated by Dr Melissa Sargaison (specialist physician and BACME Board member), Ceri Rutter (BACME PPI Lead) Anna Gregorowski (Consultant Nurse and BACME Chair); Sue Luscombe (specialist dietician), and Helen Baxter (25% Group).

Through presentation and discussion, this workshop aims to work towards a better understanding of severe and very severe ME/CFS; help attendees recognise red flags and how to respond; and signpost to resources; We are very pleased to have specialist dietician Sue Luscombe and Helen Baxter from the 25% group share their expertise in meeting the nutritional needs of people living with severe/ very severe ME/CFS. From this workshop, there will be an invitation to join in reviewing the current BACME severe guide in a future meeting.

 
InitialConditions said:
https://bacme.info/event/severe-and-very-severe-me-cfs-workshop/

Upcoming event: Severe and Very Severe ME/CFS workshop

Facilitated by Dr Melissa Sargaison (specialist physician and BACME Board member), Ceri Rutter (BACME PPI Lead) Anna Gregorowski (Consultant Nurse and BACME Chair); Sue Luscombe (specialist dietician), and Helen Baxter (25% Group).

Through presentation and discussion, this workshop aims to work towards a better understanding of severe and very severe ME/CFS; help attendees recognise red flags and how to respond; and signpost to resources; We are very pleased to have specialist dietician Sue Luscombe and Helen Baxter from the 25% group share their expertise in meeting the nutritional needs of people living with severe/ very severe ME/CFS. From this workshop, there will be an invitation to join in reviewing the current BACME severe guide in a future meeting.
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May be of interest to @Jonathan Edwards apologies if not
 
MrMagoo said:
May be of interest to @Jonathan Edwards apologies if not
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It is of interest but I will be in Peru and I suspect I am not invited anyway.
It is interesting to see the range of people involved including Helen Baxter and Sue Luscombe, together with AG from UCLH and also MS from the homeopathic hospital. She seems to be in to Yoga (for those who haven't tried it).
 
NelliePledge said:
My mind is a bit blown
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As pointed out in a thread on Cochrane, BACME are relying just on the issue of diagnostic criteria but don’t mention the problems with the studies included in the Review relating to the use of subjective outcomes in unblinded trials, the lack of long term clinically significant improvement, and the failure to address harms.

Though BACME claim to support the NICE guidelines they do so in a way that means they can still operate business as usual.

Nevertheless, it is good they have complained, as the more Cochrane’s perfidy is kept in the ‘public eye’ the better.
 
I’ve just noticed the last paragraph of this:

“BACME is a charity that represents clinicians, specialist ME/CFS services and people living with ME/CFS ….. and calls on..”

I don’t know what technically falls under the term clinician

or if all me/cfs specialists or specialist services either agree with the specific stance or are represented by or agree with BACME

but I do have an issue with them using terms like expert in or specialist in when they then use the terms like me/cfs and would be required to understand the spirit and letter of the new guideline and be up to date and understand methodological issues for research (eg that pace can’t be cited and why and a lot of old research and even recent research using those old issues needs to be junked as not applicable and of such poor quality it shouldn’t have a voice as acts as propaganda by its presence vs accruacrly etc) but both those terms of expert or experience or specialist had been gained on old ideas that harmed and old assumptions- they haven’t been through reprogramming of those

as for representing people living with me/cfs… I think we need to discuss that here because I don’t think any of their set up shows they can say that as they don’t have an uncoercive approach (yes their communication involves coercion by reacting extremely aggressively even with threats of ‘if you criticise we will paint it as troublesome patients’ but also those in clinics have their entire survival and life held hostage by the risk of bad notes suggesting psych stories or non compliance and they’ve demonstrated that not saying the right thing is taken as ‘saying the wrong thing’ and so on) that involves listening to anywhere near a representative and not cherrypicked niche of those living with me/cfs .

I just don’t think their position of power of their staff that they shouldn’t have had meant they can be representative. And to be near saying that would require very independent oversight of a very much larger and more representative of those with experience (you can’t ask people before harm hits or whilst they are still vulnerable as they are in their system) being not just consulted but those actions and inputs actually being heard and followed?
 
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