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

InitialConditions said:
Just to expand a bit; some of us in the CMRC PAG are keen to work with BACME to really drill home the message that they have to change. I think Nina Muirhead has been in conversation with them, possibly with regards to medical education.
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Is the guidance mentioned on the Position Paper thread now obsolete (from October 2020)?
It certainly needs some attention.
 
InitialConditions said:
I think it's good that Chris Ponting and Sonya Chowdhury are presenting. Clearly BACME still hasn't got the message. I will see if we can make progress on this through the CMRC Patient Advisory Group, as we have contact with Chris and Sonya.

I don't think boycotting is the right approach.
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Ok, I take your point, but I think "conflict of interest" private work or association should be flagged up as a requirement?
'Rehabilitation'/ recovery services are to be big business post/long covid.

PACE was muddied by DWP and similarly no one has dealt with Faculty of Occupational Medicine (FOM) NHS Heath at Work issue. NICE say they have no jurisdiction over NHS Health at Work!.. so who does?


http://occupationalhealthconferences.com/
RE-SCHEDULING OF OCCUPATIONAL HEALTH 2020 CONFERENCE AND EXHIBITION - update as of 1st June 2020:

After careful consideration of the situation relating to the Coronavirus outbreak, the Society of Occupational Medicine and the Faculty of Occupational Medicine have taken the decision to postpone the Occupational Health 2020 Conference and Exhibition and re-schedule to July 2021, at the same venue in Edinburgh.
Further details will be confirmed in due course.
Thank you for your understanding and continuing support.


NB It's still around......
https://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_employees_leaflet.pdf

https://www.nhshealthatwork.co.uk/chronic-fatigue.asp
 
BACME conference 2020/1 - creative approaches in CFS/ME services - rescheduled to 11 May 2021

Just a few tangential thoughts on AfME attending:

There are times to work from inside and times to not. IMO things have gone badly in the past because of a mistaken belief in compromise which is a political organisational concept.

Politicians compromise; with regards to a medical position this is not really appropriate. And that has been a problem. Compromising has only ever led to bad outcomes for PwME.

So, as long as AfME stay the course having them in a position to speak truth without being influenced to compromise is all good IMO. It may prove to be futile but worth the attempt. I would only caveat that if there is no change that one shouldn't go on pursuing things in futility but take some other tack.

The BACME crowd have too many conflicts of interest so I personally don't expect any useful change from them.
 
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Snowdrop said:
So, as long as AfME stay the course having them in a position to speak truth without being influenced to compromise is all good IMO.
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Even ignoring their long history of misguided 'compromises' with those making life worse for people with ME/CFS, would you really want AfME speaking their truth to people at BACME?
 
Esther12 said:
Even ignoring their long history of misguided 'compromises' with those making life worse for people with ME/CFS, would you really want AfME speaking their truth to people at BACME?
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I have been very critical here about many things including AfME. But my position is to take it one day or one action at a time. I think there has been real change at AfME with how they view BPS treatment of ME. If they go in with the idea of compromise then for me that will be a piece of useful data going forward as to their position.

Another way to put it is I am hopeful that AfME will take a stand for patients. I am prepared to be wrong. And if they do not as you are suggesting 'do the right thing' then I think bringing that out into the open is also a good. Of course you could question whether that would be open for us to see. I say that every time AfME or any organisation or person do something it tells us something if we pay attention.

There is no perfection. Even when on the right side of an issue errors are made. We're all human. That has to be accepted when dealing with any of this. We all just muddle along.

So as a conclusion, yes I think it is worth giving AfME the opportunity to go to the BACME thing and suss out the situation there.

It can be one way for us to (possibly) assess where AfME are at. And we must continue to do so. Always assessing with every new piece of information.

History is informative but history also evolves moment by moment.
 
One important question here would be the scope of this conference. Is it just a mutual admiration society for the CBT industry lobby that is BACME? Or does it actually involve other people that can be influenced?

Because BACME cannot be influenced, their entire thing is a denial of reality. But do they actually reach other people in such a conference? If they do, it's worth being there to correct the record, though it's only worth it if it's explicit that it is a completely different perspective that is incompatible with the very existence of BACME. Which I'm not sure they will be OK with, contrary to their empty words about being open-minded to different explanations, they are all about the one true explanation that they believe in.

Is it possible to know that? From past conferences? Frankly BACME seems like an irrelevant player in itself, trivial compared to the influence that exists in formal institutions like the way Wessely and Gerada abused.
 
Trish said:
It's good to see Chris Ponting will be talking to them about Genetics and ME/CFS, presumably introducing DecodeME.

But a lot of the topics concern me:



What's this dysregulation model? And what are 'creative' approaches to therapy? And what does trauma based CBT have to do with ME/CFS?
As for the one about ME/CFS services 'thriving'. That sounds to me like protecting their jobs.

Where is the recognition that there is no effective treatment for ME/CFS and they have to do a complete about turn and stop being 'creative' and start looking at patients' need for help with managing our lives?

And that means stopping all this talk of models and creative approaches, and instead provision of some good medical and support services, preferably with most of the current providers redeployed to do something useful.
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The dysregulation model is most likely a reference to an assumed dysregulation of the HPA axis, for which there are no tests available, as I was informed by Sue Pemberton, during my brief time as an outpatient at Leeds CFS/ME clinic. As to the practical application .. it will still likely be a graded activity therapy model.

Wishing you all improved health and every happiness. ☺
 
The James Lind Priority Setting Process aims to reach as wide a rang of PwME as possible, so "advertising" it through current clinics is important to reach thosewho may not yet be part of online or other support groups.
 
President, patrons and medical advisors
Our President, Clare Francis MBE, has worked closely with Action for M.E. since 1987
We are proud to count on support from five Patrons:
  • Lord Melvyn Bragg
  • Julie Christie
  • Prof Anthony J Pinching
  • Lord David Puttnam CBE
  • Alan Cook CBE
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https://www.actionforme.org.uk/get-information/about-us/president-patrons-and-advisors/

Sussex & Kent ME/CFS Society

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.

The organisation has seven honorary patrons. These are Sir Andrew Bowden MBE, Prof Anthony J Pinching, Dr Keith Hine, Mr Russell Grant, Caroline Lucas MP, Miss Jenny Seagrove and Dr Gabrielle Murphy.

Group officers have working relations and easy access to the charity’s advisors Dr Alan Stewart, Prof Esther Crawley, Dr Alastair Miller, Dr Jessica Eccles, Prof Neil Harrison and Prof Leslie Findley.

upload_2021-3-12_11-50-21.jpeg
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https://measussex.org.uk/about-us/
https://measussex.org.uk/links/


Action for M.E.’s
2016 – 2021 strategy
The impact of our work so far
In July 2015 we sponsored
Webinars for GPs
to run a pilot webinar on M.E., led by Dr Hazel O’Dowd, Clinical Champion for CFS/M.E. Services for Avon, Gloucester, Wiltshire and Somerset. This attracted more than 150 GPs and had its running time
extended by an hour to accommodate the many questions they asked.
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We will increase knowledge and understanding
of M.E. among primary healthcare professionals.
•
We are developing our Online M.E. Centre to share
evidence-based information and the experiences of
people with M.E., and ensure that this effectively
reaches healthcare professionals to improve
outcomes for those they support.
•
We will recruit a health education specialist for a
year to assist us in developing a programme of
training and development for primary healthcare
professionals so that they have a better
understanding of how to meet the needs of people
affected by M.E.
•
We have sponsored four webinars for 500 GPs and
continue to develop this longer-term programme.
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https://www.actionforme.org.uk/uploads/2016-2021-strategy-revised-aug-2018.pdf
 
the current BACME Board
https://www.bacme.info/sites/bacme.info/files/BACME Board Members Oct 2020.pdf

some members details:
Anna's professional interests include chronic
illness in adolescents; chronic fatigue syndrome (ME/CFS) and
medically unexplained symptoms (MUS
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Charlie brings over 20 years’ experience in fatigue management and
vocational rehabilitation to her role as trustee for BACME. She has
worked in the field of CFS/ME in the NHS and in New Zealand in a
mental health setting.
She is a trained NLP practitioner and also uses
mindfulness and relaxation techniques. She helps facilitate change in
individuals, encouraging recovery and believing each person has the
resources to succeed.
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Pete is a Clinical Specialist Physiotherapist in the Bristol Chronic
Fatigue Syndrome/ME Service and team lead. He also works in the
North Bristol NHS Trust Pain Management Service. Pete’s clinical roles
have included Pain Management Programmes and co-delivery with lay
tutors. He has been involved with individual rehabilitation and group
treatment in the Bristol CFS/ME Service since 2004. Pete also has a
longstanding involvement with the Physiotherapy Pain Association, in
the Chartered Society of Physiotherapy, collaborated extensively with
Action for ME, and has co-authored a report on the Action for ME 2010
rehabilitation survey.
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Beverly has been qualified for over 30 years and has vast experience
in pain and fatigue management and in training others. She works part
time within the North Bristol NHS Trust, working in both pain
management and fatigue management clinics. Alongside this she
manages Vitality360, a rehabilitation company also specialising in Pain
and Fatigue.
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https://www.bacme.info/civicrm/event/info?id=11

The aims of this event are:

  • To share experiences of the impact of Long-COVID on specialist CFS/ME services, professionals & patients
  • To receive updates on national and local progress on the integration of specialist fatigue management pathways within Long-COVID rehabilitation services
  • To receive an update on current and planned research programmes including how to be involved
  • To establish useful relationships and contacts with professionals working in the field of fatigue management and Long-COVID
  • To plan next steps for specialist CFS/ME services & BACME
 
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