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

Is the BACME 2019 published Survey on our NHS crap service provision on here somewhere?

* Any reference( and post 2021 NICE Challenge to their web information?)- East Midlands Chronic Fatigue Syndrome/ ME Network
https://em-edsupport.org.uk/Page/21314

PDF | Chronic Fatigue Syndrome - A Young Person's Guide

PDF | Chronic Fatigue Syndrome - Informatio for Teachers

PDF | Chronic Fatigue Syndrome - NHS Information for Schools and Teachers



* Chronic Fatigue Syndrome/ ME Service
https://www.uhdb.nhs.uk/service-chronic-fatigue-syndrome/

 

I see it is and it was not well received here on S4ME......!

 

Is the BACME 2019 published Survey on our NHS crap service provision on here somewhere?.... Yes it is, and I am revisiting this with some urgency....



* Any reference( and post 2021 NICE Challenge to their web information?)- East Midlands Chronic Fatigue Syndrome/ ME Network
https://em-edsupport.org.uk/Page/21314

PDF | Chronic Fatigue Syndrome - A Young Person's Guide

PDF | Chronic Fatigue Syndrome - Informatio for Teachers

PDF | Chronic Fatigue Syndrome - NHS Information for Schools and Teachers



* Chronic Fatigue Syndrome/ ME Service
https://www.uhdb.nhs.uk/service-chronic-fatigue-syndrome/

 

I think a proper investigation into the type of CBT that has been and continues to be offered is required. There needs to be a check to see if it’s appropriate for biological causes.

 

The rest of the post has moved but it had more detail of what it related to as a comment. I meant that 'false belief CBT' or in fact CBT that has any biopsychosocial or tendency to 'stick' personality suggestions on people isn't far from the false memory implanting issue that constituted a wake-up call moment in psych a few decades ago.

Of course CBT has no place at all for ME. It never has. The fact that they insisted on it even being mentioned near the guideline was game-playing based on 'in case they might have other things'. If they did then the ideal would be someone who was properly good at that and both understood ME (and its biological limitations such as needing to keep it short and avoiding brow-beating someone with cognitive fatigue) but also had nothing to do with the gaslighting of that old CBT - as ethically they'd be inappropriate to be put near someone who their prior practice harmed. But clearly rather a lot will potentially use this to not update from the nonsense harmful stuff.

I also think, reading this 'profile' that all CBT needs an investigation aside from this (ie ME-separate) anyway - because I get the impression that sneaking in stuff like assumptions about personality and directing people towards 'certain memories' might be a habit in some that constitutes to me a major ethical issue, potential for harm.

https://www.bbc.com/future/article/20161003-would-it-be-ethical-to-implant-false-memories-in-therapy

 

BACME has a new and updated website: https://bacme.info/. It's an improvement on the old one, and includes some new content (but nothing of note).

They are also advertising their November 2022 conference: https://bacme.info/event/bacme-2022-conference/. Non-BACME members can attend, but it's a paid event.

 

Monaghan and Strain seem like a bit of progress.

I still don't trust them one bit.

 

There is hardly any good information on this website.

 

I missed that there is a conference programme posted on the site. It would be good to get someone from @PhysiosforME or likewise to attend, and report back if possible.

 

the 'services map' seems to work on this new website.
I haven't looked through all the entries but there is this one
Bath Specialist Paediatric CFS/ME Treatment Service

https://bacme.info/services/bath-specialist-paediatric-cfs-me-treatment-service/

pushing FITNET-NHS and yet "We believe that all clinical care should have an evidence base. We therefore only offer treatment that has been recommended by NICE. The service has close links with the University of Bristol, which conducts research in to the causes and treatment of CFS/ME."

also, although there is no mention of it here, Bristol is currently collaborating on the LP research in Norway, and Bath have form with LP (SMILE etc).

are Doctors with ME aware of the conference? @EducateME

 

South Tees Hospitals NHS still links to this:
https://www.nbt.nhs.uk/sites/defaul... Therapy and Symptom Management in CFS ME.pdf

https://www.southtees.nhs.uk/resources/bacme-guidelines-for-therapy-and-symptom-management/

(I haven't checked to see which others also still have this link.)

 

https://bacme.info/services/bath-specialist-paediatric-cfs-me-treatment-service/

This jumped out at ME. My embolding,

' The service sees over 450 children with CFS/ME a year and provides a specialist service for the assessment, diagnosis and treatment of any child or young person who has CFS/ME and needs help.

We have particular expertise in helping and supporting children who are severely affected, as well as children whose case may be complicated by more than one problem.

The outlook for children with CFS/ME who access appropriate treatment is excellent, with most making a good or complete recovery. We therefore aim for recovery...'

David T... over to you!
NICE have corrected ME/CFS, so they even have got this wrong.......CFS/ME...

 

Co production came in 2016 Sustainability & Transformation programmes.
March 2016 Sustainability and Transformation Plan footprints
https://www.england.nhs.uk › uploads › 2016/02
PDF
These blueprints, called Sustainability and Transformation Plans (STPs), will be place- based, multi-year plans built around the needs of local populations


https://www.kingsfund.org.uk/topics/integrated-care/sustainability-transformation-plans-explained
STPs are five-year plans covering all aspects of NHS spending in England. Forty-four areas have been identified as the geographical ‘footprints’ on which the plans are based, with an average population size of 1.2 million people (the smallest covers a population of 300,000 and the largest 2.8 million). A named individual has led the development of each STP. Most STP leaders come from clinical commissioning groups (CCGs) and NHS trusts or foundation trusts, but a small number come from local government.

'Co production' is the new name within ICS System and under April 2022 Health & care Act!

 

Not sure where Marc got this:

From: Dr. Marc-Alexander Fluks


Source: BACME
Date: November 9 and december 2, 2022
URL: https://bacme.info/event/bacme-2022-conference/


BACME 2022 Conference: Post-Exertional Malaise and Beyond
---------------------------------------------------------

The British Association of Clinicians in ME/CFS (BACME) recently held
our latest conference which was delivered virtually for the second time.

Many of our members are missing the networking and social aspects of
in-person events but can also see many advantages to the virtual format
in terms of time, cost and accessibility.

Delivering the conference in the virtual format has led to us producing
some valuable education resources in the form of video recordings of
presentations and innovation slot presentations and these are available
to all BACME members through the members resources on our website.

We were also able to incorporate the voice of people with ME/CFS
throughout the day using a range of creative media including video
diaries and interviews, poems and music. It is clear from the feedback
received that this aspect of the conference was valuable and much
appreciated by our attendees.

If you would like to see the broad range of subjects covered then please
have a look at our Conference programme:

https://bacme.info/wp-content/uploa...ractive-Conference-Programme-without-Zoom.pdf

We have received a huge amount of positive feedback following the event.
These are a small selection of the comments submitted in answer to the
question: 'What did you like about the conference?'

The top-rated speakers and experts in the field, choice of subjects,
number of workshops and networking opportunities. Really enjoyable and
informative event which allows for networking and shared experience of
health professionals. Patient and carer opinions gave food for thought
also. Fantastic mix of speakers and workshops. Overwhelming amount of
information and discussion to process, glad they are going on website.

Mix and match of talks, workshops, break out small group and creative
sessions... but most important, patient voice and the lovely video story
and a fantastic opportunity for interaction...and that too all in a
virtual environment-too good!

Great use of patient experience of living with ME. I really appreciated
the focus on patient experiences blended with science. The patient
representation was thought provoking and emotional.

Membership of BACME is open to UK-based healthcare professionals,
researchers and patient representatives involved in the diagnosis and/or
treatment of ME/CFS using clinically effective practice.
If you are interested in becoming a BACME member then you can apply to
join through our website:
https://bacme.info/join/


Kind regards

The BACME Team

 

This is from their mailing list. Came the other day.

 

December 2022 Guidance for Primary Care https://bacme.info/wp-content/uploads/2022/12/BACME-Primary-Care-Guide-to-MECFS.pdf

 

There seems to be a focus shift over the past year or two at Bath to the more severely affected , which, given the published research , is very concerning.