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United Kingdom: News from BACME - British Association of Clinicians in ME/CFS
- Thread starter Sly Saint
- Start date
Sly Saint
Senior Member (Voting Rights)
Tuesday 10th August
6-8pm
The new NICE guidelines are going to be published on the 18th Aug. Presumably the final draft will already be known by the time of this event so it will be interesting to know what they are planning and how they will 'adapt' current treatment practices; will they stop using CBT/GET or just call it something else.
I'd like to be a fly on the wall in that discussion. I suspect it will be all about preserving their jobs and making as little change as possible to services.
@PhysiosforME and @Joan Crawford are you able to join BACME and attend the event?
@PhysiosforME and @Joan Crawford are you able to join BACME and attend the event?
InitialConditions
Senior Member (Voting Rights)
It would be good for someone to join for this reason. This is open to all clinicians; it's not a closed event only open to BACME members.
Joan Crawford
Senior Member (Voting Rights)
Thanks for posting I should get a chance to pop along.
As an aside: I'm involved in my NHS trust's long Covid response. From my experience so far I can see that the respiratory physios and AMPs (senior physios who screen patients for rheumatology, surgery and chronic pain clinics etc) are getting well up to speed on ME and long Covid - the Physios for ME site and information is being read and understood. And the respiratory physios are well aware of the different subgroups of pwLong Covid (those with post ICU symptoms, those who were often more mildly affected by Covid but who have gone on to develop PEM etc and so on).
More helpfully it'd be good to know what biomed research is being done, by whom and where. And how will success be measured? And if that yields very little - what'll happen then? If a vacuum forms (as it did with ME, ditto GWI) then that'll be moment the BPS brigade could step in.
As an aside: I'm involved in my NHS trust's long Covid response. From my experience so far I can see that the respiratory physios and AMPs (senior physios who screen patients for rheumatology, surgery and chronic pain clinics etc) are getting well up to speed on ME and long Covid - the Physios for ME site and information is being read and understood. And the respiratory physios are well aware of the different subgroups of pwLong Covid (those with post ICU symptoms, those who were often more mildly affected by Covid but who have gone on to develop PEM etc and so on).
More helpfully it'd be good to know what biomed research is being done, by whom and where. And how will success be measured? And if that yields very little - what'll happen then? If a vacuum forms (as it did with ME, ditto GWI) then that'll be moment the BPS brigade could step in.
This is good news. Thanks.
Suffolkres
Senior Member (Voting Rights)
Well, BLOWME.... from BACME
Source: British Association for CFS/ME (BACME) Date: August 2021
URL: https://www.bacme.info/sites/bacme.info/files/BACME An Introduction to Dysregulation in MECFS.pdf An introduction to dysregulation in ME/CFS
Source: British Association for CFS/ME (BACME)
Date: August 2021
URL: https://www.bacme.info/sites/bacme.info/files/BACME Post-Exertional Malaise.pdf
Post-Exertional Malaise
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Sly Saint
Senior Member (Voting Rights)
https://www.bacme.info/sites/bacme.info/files/BACME An Introduction to Dysregulation in MECFS.pdf An introduction to dysregulation in ME/CFS
"
The following document is reproduced with kind permission from the team at
The Yorkshire Fatigue Clinic:
Dr Sue Pemberton, PhD, MSc, BHSc, Dip COT MRCOT, Therapy Director
Dr Vikki McKeever, MB BS MRCGP General Practitioner with Special Interest in ME/CFS
Joseph Bradley, BSc OT, MRes, MRCOT Clinical Specialist Occupational Therapist
Some additions have also been made by
Dr Pete Gladwell PhD MCSP Team Lead Bristol M.E. Service, North Bristol NHS Trust, BACME trustee
Anna Gregorowski RSCN, B Sc, MA, Consultant Nurse, TRACCS, UCLH, BACME Chair"
It would be interesting to see what additions BACME have made
the yorkclinic website:
http://www.yorkshirefatigueclinic.co.uk/services
pdf on information on the dysregulation model
http://www.yorkshirefatigueclinic.c.../05/18/theory-model-nov-2020_[9279]-12628.pdf
"
The following document is reproduced with kind permission from the team at
The Yorkshire Fatigue Clinic:
Dr Sue Pemberton, PhD, MSc, BHSc, Dip COT MRCOT, Therapy Director
Dr Vikki McKeever, MB BS MRCGP General Practitioner with Special Interest in ME/CFS
Joseph Bradley, BSc OT, MRes, MRCOT Clinical Specialist Occupational Therapist
Some additions have also been made by
Dr Pete Gladwell PhD MCSP Team Lead Bristol M.E. Service, North Bristol NHS Trust, BACME trustee
Anna Gregorowski RSCN, B Sc, MA, Consultant Nurse, TRACCS, UCLH, BACME Chair"
It would be interesting to see what additions BACME have made
the yorkclinic website:
http://www.yorkshirefatigueclinic.co.uk/services
pdf on information on the dysregulation model
http://www.yorkshirefatigueclinic.c.../05/18/theory-model-nov-2020_[9279]-12628.pdf
InitialConditions
Senior Member (Voting Rights)
Coincidentally, I have just posted a blog on this very topic. See thread here: https://s4me.info/threads/blog-bacm...anticipation-of-updated-nice-guideline.21784/
rvallee
Senior Member (Voting Rights)
Even when they try to just copy the language they can't do it because they don't understand what the words mean. I guess there is some progress in that they use PEM, rather than their usual post-exercise fatigue. But they use it to mean the exact same thing, because they have no idea what they're doing and never listen or pay attention to a damn thing.
Eternal rebranding is the strategy. Just a fresh coat of invisible paint. Like one yellow dude said: get bent, quacks.
I note they are using ME/CFS now, not CFS/ME.
-----
The deconditioning model swapped out for a dysregulation model. Meh. Apart from any other reason, dysregulation covers an awful lot of ground, without offering much clarity or insight.
They need to stop postulating models until they have good evidence for a coherent compelling one. Especially for determining clinical and policy advice.
And they claim it is patients who have obsessive behaviour and distorted perceptions.
-----
In fairness, I think this is a critical acknowledgement and step in the right direction.
-----
The deconditioning model swapped out for a dysregulation model. Meh. Apart from any other reason, dysregulation covers an awful lot of ground, without offering much clarity or insight.
They need to stop postulating models until they have good evidence for a coherent compelling one. Especially for determining clinical and policy advice.
They are going to shoehorn 'fatigue' in there somehow.
And they claim it is patients who have obsessive behaviour and distorted perceptions.
-----
In fairness, I think this is a critical acknowledgement and step in the right direction.
Invisible Woman
Senior Member (Voting Rights)
The thing that really gets me is they way BACME & the rest of the BPS crew constantly get away with avoiding the main issue.
Here they go muddying the waters by discussing yet another hypothesis.
The original hypothesis was wrong & there is no evidence the "new" one is any more accurate. The hypothesis isn't the issue here though.
The issue is the treatment. The treatment doesn't work. In fact in a great many cases the treatment causes harm. This has now been demonstrated by multiple patient surveys including one commissioned at the request of NICE.
PACE the trial to end all trial etc. is no longer considered to provide anything beyond low quality evidence. What PACE did do was test the treatment on offer here. When analysed properly the one thing PACE proved was that this treatment does not work.
So swapping one hypothesis for another is a deliberate attempt at distraction. It's not the hypothesis that's the problem here, it's the treatment. NICE provide treatment guidelines that are (or should be) evidence driven. The underlying hypothesis is irrelevant if the treatment doesn't work & isn't safe.
Here they go muddying the waters by discussing yet another hypothesis.
The original hypothesis was wrong & there is no evidence the "new" one is any more accurate. The hypothesis isn't the issue here though.
The issue is the treatment. The treatment doesn't work. In fact in a great many cases the treatment causes harm. This has now been demonstrated by multiple patient surveys including one commissioned at the request of NICE.
PACE the trial to end all trial etc. is no longer considered to provide anything beyond low quality evidence. What PACE did do was test the treatment on offer here. When analysed properly the one thing PACE proved was that this treatment does not work.
So swapping one hypothesis for another is a deliberate attempt at distraction. It's not the hypothesis that's the problem here, it's the treatment. NICE provide treatment guidelines that are (or should be) evidence driven. The underlying hypothesis is irrelevant if the treatment doesn't work & isn't safe.
Simbindi
Senior Member (Voting Rights)
I think we (patients) should be pushing the main UK ME charities to take this issue up with BACME once the final NICE guidelines are published.
ME/CFS Skeptic
Senior Member (Voting Rights)
Sly Saint
Senior Member (Voting Rights)
I was just checking out the BACME website.
I've included the front page here just in thumbnail, because I don't want to inflict it on you if you aren't feeling up to it.
I can not think of a less appropriate front page for a professional website related to ME/CFS. I mean, on another page it has a directory of ME/CFS clinics and services for people with ME/CFS to look at, so they are expecting people with ME/CFS to use the site. Apart from the riot of colour, there are black silhouettes of people running and jumping and climbing along the bottom. At the top right are some greyed out headings in caps that are hard to read.
I'm not expecting BACME to have a drab front page with a picture of a person with ME/CFS curled in the foetal position in bed. But an explosion of colour and the very explicit suggestion that we will soon be leaping around now that we have come to the right place is very odd.
Anyway.
I've included the front page here just in thumbnail, because I don't want to inflict it on you if you aren't feeling up to it.
I can not think of a less appropriate front page for a professional website related to ME/CFS. I mean, on another page it has a directory of ME/CFS clinics and services for people with ME/CFS to look at, so they are expecting people with ME/CFS to use the site. Apart from the riot of colour, there are black silhouettes of people running and jumping and climbing along the bottom. At the top right are some greyed out headings in caps that are hard to read.
I'm not expecting BACME to have a drab front page with a picture of a person with ME/CFS curled in the foetal position in bed. But an explosion of colour and the very explicit suggestion that we will soon be leaping around now that we have come to the right place is very odd.
Anyway.
This is what I came here for:
The following statement from (or at least attributed to) BACME has been posted and discussed on the guideline delay thread:
The following statement from (or at least attributed to) BACME has been posted and discussed on the guideline delay thread:
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MSEsperanza
Senior Member (Voting Rights)
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Dx Revision Watch
Senior Member (Voting Rights)
The S and K Society is a member of BACME and BACME may have sent out this statement to members of BACME in the last couple of days. I cannot confirm that this is a verbatim BACME statement and that it will be posted on their website.
The content of the S and K Society post:
"BRITISH ASSOCIATION FOR CFS/ME (BACME) – AUGUST"
is signed "BACME Board" and displays the BACME logo.
https://measussex.org.uk/about-us/
"...The charity is a member organisation of a number of local and national committees and working groups including the NHS Kent & Medway CFS/ME Service and the NHS Sussex-wide CFS/ME Service along with the British Association for CFS/ME (BACME) and the UK CFS/ME Research Collaborative."
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