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/
 
Suffolkres said:
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/
Click to expand...
I see it is and it was not well received here on S4ME......!
 
Jonathan Edwards said:
We have based our interventions to date on this original research andour experience tells us that they work. However, these Interventions have been embedded at Vitality360 within a multidisciplinary approach and not used in isolation.

What we have learnt from the research and our experience is that by embarking on an individualised programme of graded exercise or activity, people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment.



This sort of talk should be open to legal challenge. It is either fraud or incompetence.
As I pointed out at the NICE committee, it is completely impossible for therapists to know that their treatment works without controlled trial evidence. The effects documented in PACE are FAR TOO SMALL.

Individualisation means the opposite of evidence based treatment. It means doing whatever you fancy. Yes, I do think these people are stupid. They leave me with no alternative.
Click to expand...



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/
 
bobbler said:
I meant a proper investigation into whether this type of CBT should ever have been offered and is harmful - doubly bad that the cause is biological.
Click to expand...

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.
 
livinglighter said:
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.
Click to expand...

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
 
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
The Bath Specialist Paediatric CFS/ME Treatment Service can provide assessment, diagnosis and treatment programmes for children and young people aged 2 to 18 years old who live anywhere in the UK. The team comprises specialist Consultant Paediatricians, Psychologists, Physiotherapists and Occupational Therapists, and offers individually tailored treatment packages.

We accept referrals from across the UK, and currently offer the opportunity for CFS/ME treatment without the need for travel within the FITNET-NHS Trial (subject to specific criteria). ALL referrals should be made via the NHS e-Referrals system – Enter Post Code BA1 3NG : Children & Adolescent Services/Neurology/Paediatric CFS Service
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.
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. This means that all the treatment offered by the clinical team is based on the most up-to-date research results.
Click to expand...
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).

InitialConditions said:
It would be good to get someone from @PhysiosforME or likewise to attend
Click to expand...
are Doctors with ME aware of the conference? @EducateME
 
InitialConditions said:
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.
Click to expand...
Yes would definitely be good to hear about these presentations, seems like they are attempting to move with the times, interesting to hear what these initiatives in different locations involve.

something mentioned there about co production which I know nothing about but I think @Suffolkres has mentioned
 
South Tees Hospitals NHS still links to this:
https://www.nbt.nhs.uk/sites/defaul... Therapy and Symptom Management in CFS ME.pdf

Guidance for therapists covering the provision of therapy for CFS/ME. This includes a
list of resources (available on the website BACME.info) for use in therapy, as well as
guidance on support and supervision.
It does not replace specialist CBT and GET training (recommended by NICE and available at
www.PACEtrial.org). It represents
pragmatic recommendations from experienced clinicians to guide practice when
seeing adults with CFS/ME, where specialist CFS/ME CBT and GET therapists
are not available/appropriate.
It is informed by these approaches.
Click to expand...

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.)
 
Sly Saint said:
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
Click to expand...

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...
 
NelliePledge said:
Yes would definitely be good to hear about these presentations, seems like they are attempting to move with the times, interesting to hear what these initiatives in different locations involve.

something mentioned there about co production which I know nothing about but I think @Suffolkres has mentioned
Click to expand...

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

Click to expand...
 
Tom Kindlon said:
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
Click to expand...

This is from their mailing list. Came the other day.
 
Daisy said:
December 2022 Guidance for Primary Care https://bacme.info/wp-content/uploads/2022/12/BACME-Primary-Care-Guide-to-MECFS.pdf
Click to expand...
Just started reading it. The symptoms section puts far too much emphasis on fatigue, even describing PEM as an increase in fatigue that may last a few days and may be accompanied by other symptoms.
Post-Exertional Malaise In ME/CFS the key feature of the fatigue is that there is a clear activity related pattern. This is often referred to as Post-Exertional Malaise (PEM) or Post-Exertional Symptom Exacerbation (PESE). This is where there is a clear relationship between normal everyday activity levels causing a disproportionate escalation in fatigue which does not improve with rest and is slow to recover over several days. For some people the fatigue escalation can occur during or soon after stopping an activity but typically the significant escalation in fatigue is delayed and may occur hours or days after the activity which triggered it. This delayed escalation in fatigue is often accompanied by immune system mediated symptoms such as generalised flu-like malaise, tender lymph nodes, sore throats etc. Many patients also experience an escalation in other symptoms as well such as pain, headaches, brain fog, nausea, and sensory sensitivities.

Patients may not have recognised the delayed post-exertional pattern and may report a chaotic and fluctuating picture of better and worse days. Often what is happening is a ‘Boom and Bust’ cycle whereby they push themselves to do more on a better day then feel more ill the following few days and are forced to reduce their activity levels due to the escalation in symptoms. Prompting patients to keep an activity/fatigue diary can help them to identify if this PEM pattern is present.
Click to expand...

Not good enough.

They are still very keen on their 'dysregulation' and HPA axis stuff, linking to their article about this:
https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf

Page 12
Disruption to the normal sleep cycle can mean sleep is no longer restorative and hence why recovery after activity is compromised.
Click to expand...
Er, what?

Having said that, a lot of it is actually not too bad. They do emphasise pacing and trying to keep activity low enough to minimise PEM, though they can't resist suggesting pacing up as a possiblity.

Interesting that they place diagnosis, information about management, ongoing care and regular (annual) reviews squarely with primary care, not ME/CFS clinics.
 
Suffolkres said:
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...
Click to expand...
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.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom