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

Dx Revision Watch said:
is signed "BACME Board".
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Could be that the S and K society doesn't feel represented by the BACME board's position so only shows the part of a text we don't know for which purpose it was created and to whom it was addressed.

I realize there are issues with BACME too, but I think we don't know their position on the final guideline -- so please don't let the K and S Society spread confusion.
 
The BACME position statement from last November is pretty dreadful.
https://www.bacme.info/sites/bacme.... on the Management of ME-CFS October 2020.pdf
They have simply replaced the deconditioning model with the equally unevidenced 'dysregulation' model, and replaced GET with fixed increments with this:
BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline.
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They go on about rehabilitation and individualised therapy and seem to be claiming it is effective treatment.
 
Simbindi said:
Is any other patient group a member of BACME?
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I haven't been able to locate a list of members. In 2018, BACME reported that it had 131 members, according to the Minutes of a General Meeting held in Liverpool in March 2018.

According to the MEA:

"BACME (The British Association for CFS/ME) is a group that comprises health professionals working in the hospital-based NHS referral services for ME/CFS and several patient representatives. The ME Association is not a member of BACME."


@MSEsperanza

If you are concerned that this may not be an official BACME statement, you could contact BACME at info@bacme.info and request clarification.

If you don't plan to do this, let me know and I will contact BACME for clarification.
 
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https://measussex.org.uk/about-us/30-years-plus/

(...)

"Over the years we have served on a number of national and local committees and working groups including the CMO’s and the MEA’s and we continue to work with NHS Specialist CFS/ME Service teams and national bodies including BACME and CFS/ME Research Collaborative."

(...)

"British Association for CFS/ME (BACME) Chair – Anna Gregorowski

"Many Congratulations to the Sussex and Kent ME Society on their continued success in making such a positive difference to the lives of those who suffer with ME/CFS and for the way they support professionals working in ME/CFS services in Sussex, Kent and indeed the UK. As Chair of BACME, I am thankful to Colin for his ongoing support, the way he consistently shares information regarding latest research and developments in the ME/CFS field and for the balanced views of this society. I look forward to continuing to work collaboratively with the Sussex and Kent ME Society and am sure they will continue to flourish in their exemplary work."
 
Dx Revision Watch said:
https://measussex.org.uk/about-us/30-years-plus/

(...)

"Over the years we have served on a number of national and local committees and working groups including the CMO’s and the MEA’s and we continue to work with NHS Specialist CFS/ME Service teams and national bodies including BACME and CFS/ME Research Collaborative."

(...)

"British Association for CFS/ME (BACME) Chair – Anna Gregorowski

"Many Congratulations to the Sussex and Kent ME Society on their continued success in making such a positive difference to the lives of those who suffer with ME/CFS and for the way they support professionals working in ME/CFS services in Sussex, Kent and indeed the UK. As Chair of BACME, I am thankful to Colin for his ongoing support, the way he consistently shares information regarding latest research and developments in the ME/CFS field and for the balanced views of this society. I look forward to continuing to work collaboratively with the Sussex and Kent ME Society and am sure they will continue to flourish in their exemplary work."
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Interesting that in this statement they refer to ME/CFS, rather than the usual CFS/ME, which of course is their very name embodies. The two different acronyms typically identify which side of the BPS divide .
 
https://www.bacme.info/sites/bacme.info/files/BACME CIO Constitution January 2021.pdf

THE CHARITABLE INCORPORATED ORGANISATION CONSTITUTION ADOPTED ON (date) OF THE BRITISH ASSOCIATION OF CFS/ ME (BACME)
Date of constitution (last amended): 06 January 2021

9 Membership of the Association

9.1 The subscribers to the constitution are the members of BACME (a) Eligibility Membership of the BACME is open to UK-based healthcare professionals, researchers and patient representatives involved in the diagnosis and/or treatment of CFS/ME using clinically effective practice. Members must support CFS/ME services to deliver clinically effective treatment that is consistent with NICE and RCPCH guidelines or updated best available evidence, promote, support and share audit and evaluation information among CFS/ME services including encouraging the use of available tools to benchmark services and support research for individuals diagnosed with CFS/ME.

Individuals not meeting these criteria and with a specific interest in CFS/ME can apply to join BACME providing they agree to uphold clinically effective practice and the terms of the constitution. Each membership is for a single and separate individual. Membership of the BACME is open to anyone who is interested in furthering its purposes, and who, by applying for membership, has indicated his, her or its agreement to become a member and acceptance of the duty of members set out in sub-clause (3) of this clause.

A member may be an individual.
 
MSEsperanza said:
Could be that the S and K society doesn't feel represented by the BACME board's position so only shows the part of a text we don't know for which purpose it was created and to whom it was addressed.

I realize there are issues with BACME too, but I think we don't know their position on the final guideline -- so please don't let the K and S Society spread confusion.
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this is not the first time that the Sussex ME Society has been the ones to release news on BACMEs behalf; they (BACME)first introduced their new guidelines for Severe ME through this group before.

BACME were previously closely affiliated with AYME, from memory their (BACME) funding was processed through them , (its in one of the minutes of meetings posted somewhere on the forum).
AYMEs Medical Adviser was Esther Crawley, who is also one of the Sussex and Kent ME Societys medical advisers.

I think BACME are just biding their time to see which way things go. That way it's a win-win situation for them.

If they were really behind the new guidelines they should have spoken out by now, as theoretically they are the main people who will be charged with implementing them.
 
Sly Saint said:
this is not the first time that the Sussex ME Society has been the ones to release news on BACMEs behalf; they (BACME)first introduced their new guidelines for Severe ME through this group before.

BACME were previously closely affiliated with AYME, from memory their (BACME) funding was processed through them , (its in one of the minutes of meetings posted somewhere on the forum).
AYMEs Medical Adviser was Esther Crawley, who is also one of the Sussex and Kent ME Societys medical advisers.

I think BACME are just biding their time to see which way things go. That way it's a win-win situation for them.

If they were really behind the new guidelines they should have spoken out by now, as theoretically they are the main people who will be charged with implementing them.
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The other thing to remember is that not all statements of support or opposition are published publicly. What a group says behind closed doors can often be surprising.
 
BACME said:
Members must support CFS/ME services to deliver clinically effective treatment that is consistent with NICE and RCPCH guidelines or updated best available evidence, promote, support and share audit and evaluation information among CFS/ME services including encouraging the use of available tools to benchmark services and support research for individuals diagnosed with CFS/ME.
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'clinically effective treatment' - er, what? There isn't any. What we need is compassionate and accessible care and support, and symptomatic treatment to help coping with symptoms.

'support and share audit and evaluation information among CFS/ME services including encouraging the use of available tools to benchmark services'
So how come Graham's research showed there is no audit of long term effects and harms in most clinics?
And how come they let Chalder, Wessely et al publish unchallenged their abysmal biased attempt to show their clinic is effective?

BACME is part of the problem if this is the sort of stuff they're putting out.
 
Trish said:
'clinically effective treatment' - er, what? There isn't any. What we need is compassionate and accessible care and support, and symptomatic treatment to help coping with symptoms.
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Yes, that was my immediate thought - by this criteria they shouldn't have any members, hence not exist at all. However, it is feeling more and more like we are in an alternate reality so perhaps we need to learn the laws of this one...
 
From ME Association on Facebook:

Code: 
https://www.facebook.com/meassociation/posts/4308399339217691


Dr Charles Shepherd adds the following under the BACME post:

"BACME is the organisation that represents health professionals who work in the hospital based clinics and services for people with ME/CFS

It is very encouraging to see that BACME are willing to work with implememtation of the new NICE guideline

The source of this information is the Kent and Sussex ME Society:

https://l.facebook.com/l.php?u=https://measussex.org.uk/british-association-for-cfs-me-bacme-august "​



 
Further comments on Facebook from Dr Charles Shepherd:

ME Association
Hi Peter. I have come to the same conclusion as yourself - the statement indicates that while BACME have some reservations about the new guideline (which we all do) they are willing to implement the recommendations (which is obviously good news). The Kent and Sussex group have placed the BACME statement in the public domain on their website - so I assume that this has been done by permission of BACME. I cannot see a statement from the group on the delay. Dr CS MEA

----------------------

ME Association
And yes, it does seem to demolish any claims by the Royal Colleges that the existing ME/CFS referral services are either unable or unwilling to implement the new recommendations re CBT and GET. Which is more good news....CS
 
I don't read it as good news necessarily. It's just BACME positioning themselves to make slight tweaks to their terminology (dysregulation instead of deconditioning, and activity management with gradually increasing activity instead of GET), and to keep doing exactly what they do now.
 
Trish said:
I don't read it as good news necessarily. It's just BACME positioning themselves to make slight tweaks to their terminology (dysregulation instead of deconditioning, and activity management with gradually increasing activity instead of GET), and to keep doing exactly what they do now.
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Completely agree.

On the other hand though, if BACME are publicly stating that they are prepared to work with the guidelines, even if their fingers are crossed behind their backs as they say it, then it does weaken the "well, the clinics won't support it argument".

The only thing that's for sure, no matter what happens with the guidelines we'll still have our work cut out for us.
 
Ariel said:
I am afraid I don't understand what BACME do exactly but is there any hope of organizations becoming more supportive over time?
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I think with decent NICE guidelines there is potential for this. Many professionals may not have wanted to join this organisation because their terms state they expect members to support the implementation of the (2007) NICE guidelines and the RCPCH guidelines (which Crawley must author). A decent NICE guideline for ME/CFS could actually change this organisation in the future to become something much more aligned to patient ME groups' needs.
 
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