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

So this suggests maybe a precursor group could have been a CG53 stakeholder before the two groups became BACME?

The Clinical Network Co-ordinating Centres National Collaborative certainly sounds like something that would represent the interests of the clinics that had been set up ~2005-2006.

It may be that both stories of their origin are true.

 

see also this thread
https://www.s4me.info/threads/bacme-website-changed-members-area.7068/

 

Yes that was my thought. There's also this: https://wmmeg.weebly.com/uploads/4/...llaborative_conference_programme_oct_2007.pdf

 

really? maybe that's different usage. I consider nurses, therapists etc also to be clinicians.

 

Copied from UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Have we got this (I'll remove if we have).

BACME Press statement:

https://www.bacme.info/sites/bacme.info/files/BACME Press Statement NICE Guideline publication Oct 2021.pdf

The new NICE Guideline on ME/CFS was published on 29th October 2021
This is BACME’s response to the publication:

October 2021

BACME welcomes the new NICE Guidance on ME/CFS in the hope that this will support continued progress in improving the quality of life of all people who have the complex illness ME/CFS.

Clinicians working in NHS specialist ME/CFS services strive to provide high quality care and support to people with ME/CFS while recognising that there is still a long way to go with our understanding of the condition and we do not yet have a robust evidence base on which to guide treatments and therapy approaches.

The new NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise. The guideline has also clarified the use of the term Graded Exercise Therapy (GET) and, in a change from the previous guideline, it has now restricted use of the term GET to describe therapy programmes based on treating deconditioning. The symptoms of ME/CFS are not caused by deconditioning.

This guideline marks the move away from using GET programmes for treating ME/CFS. This is a move the majority of BACME members working in NHS specialist services have already made. BACME welcomes the fact the new NICE guideline specifies that clinicians from all disciplines delivering care to people with ME/CFS should have specialist knowledge of the condition.

BACME continues to support research which aims to provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.

BACME recognises the importance of providing confident support to people with ME/CFS now and would like to see increased investment in specialist service provision to ensure equitable access for all people with ME/CFS.

BACME will use the new NICE guideline as a foundation on which to build further clinical guidance on the delivery of care to people with ME/CFS and work to ensure that the patient story is heard and embedded in the future of ME/CFS care.

 

Copied from UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

It seems there is a new BACME members survey - the one cobbled together in August when the pause was announced.

 

Old BACME document still being linked to on NHS CFS Services websites

"
Once a diagnosis has been made, patients should be considered for further evaluation to
see if they would benefit from the evidence based treatments (CBT – cognitive behaviour
therapy and GET – graded exercise therapy). Where these specialist services are not
available, rehabilitation using those principles (as described later in this guide)."

https://www.southtees.nhs.uk/content/uploads/BACME-Guide-5815.pdf

Southtees NHS site not updated still offering GET/CBT.
https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/the-cfs-service/

 

Not sure whether that has been posted yet elsewhere:

BACME member survey presented at the October 2021 Round Table with NICE:

Members Survey on the delivery of therapy within specialist ME/CFS services and the
journey to publication of the new NICE Guideline on ME/CFS (October 2021)

Link to PDF:

https://www.bacme.info/sites/bacme.info/files/BACME Members Survey re NICE Guideline paused publication Oct2021 .pdf

(The BACME website is recommended in the member briefing of the Royal College of Paediatrics (RCPCH) )

(Edited to fix link to the RCPCH / added link to forum thread ).

 

This was the survey Dr Phil Hammond shared on Twitter saying it was a pre-guideline survey showing that GET was not really widely used in clinics, until I told him it was actually a post-guideline survey, and that the pre-guideline survey (BACME's previous survey of clinics, from 2018) evidenced widespread use of GET!

 

This comment is interesting in two respects:

Despite these therapies being recommended in the 2007 NICE Guideline, many clinical staff are aware of research developments revealing more about the underlying physiological processes and have listened to feedback from patients indicating that these approaches are not always suitable and hence they have moved on to look for other approaches that may help.

Firstly, it acknowledges that therapists are getting negative feedback from patients about use of therapies.

Secondly, and disappointingly, the rationale for change is not what it should be. Research developments have told us nothing about the physiology that tells us how to treat people.
Rather than changing practice just based on local feedback, health care professionals should have been aware of the lack of evidence for useful efficacy from PACE in the first place, and more recently, aware of the publications critical of PACE.

 

My first take home is that for the UK specialist services GET was already on the way out before the NICE guidelines were published, though we don’t know how much this was happening because it was observed not to work within clinical practice or because of the developing recognition of just how weak the research evidence for it is or in anticipation of the new guidelines.

Also it would seem that some form of ‘pacing up’ is being intentionally undertaken by many services, even though it has no published literature in terms of service evaluation, single case histories or more importantly research evaluation. This is particularly concerning given in general these services do not record reasons for drop out or treatment refusal, do not undertake any long follow up and have no robust system for recording harms. Is it ethical to introduce nationally a new therapeutic intervention without any research under pinning or recording of harms?

• Are patients being ‘paced up’ informed of the distinction between pacing as a self management tool to minimise the negative consequences of over exertion and using pacing to achieve a perceived ‘stable base line’ from which to increase activity levels?
• Are patients given the tools to distinguish between an initial uplift in activity levels, due to fewer crashes or episodes of PEM, that is the elimination of some negative responses to over exertion, and a ongoing recovery process?
• Are patients given the tools to distinguish between a temporary short term set back and deterioration resulting from increasing activity beyond the activity ceiling inherent in their current underlying ME?
• Are patients warned that this is an unevaluated experimental intervention that has potential risks, are they in a position to give informed consent?
• Are patients warned that involvement in a time limited therapist led intervention, ie attending a specialist service, will result changes to allow focus on the intervention, such as not doing some everyday activities, that may not be sustainable long term following discharge from the service? Are they informed that apparent short term improvement might not be sustainable when faced with the ongoing necessities of everyday life?

My personal experience of specialist service guided pacing, though over a decade ago, was to embrace it as a tool for ‘pacing up’, to act on the assumption if I could avoid any crashes or PEM I was creating a situation where spontaneous recovery would automatically occur and to continue to occur on an ongoing basis. Though this was not explicitly stated I believe the therapist, consciously or unconsciously, encouraged me in those assumptions. In effect I was engaging in a very very gradually incremented graded exercise programme. On discharge my overall activity levels were increased and PEM (though I did not know that term at that stage) was much much reduced. Though I can not unambiguously attribute my subsequent relapse a year or so later to my increasing activity levels, I am confident that a false belief that any deterioration is reversible and that recovery when it happens will be permanent has led to me making bad life and financial choices leaving me less able to practically cope with the relapses and overall deterioration that have occurred.

 

I agree this is an important issue, and would be happy to work with anyone to achieve this, though individually going beyond comments to collating larger amounts of information, adding sources and references, etc, I quickly hit my personal cognitive limits so would struggle to achieve/lead anything like this by myself.

 

Thank you for the tag - there is still so much to do regarding educating our fellow therapists!!!!!!!!

 

https://www.bacme.info/civicrm/event/info?id=15

BACME networking event: A Conversation About....NICE

 

hmmm finding that a bit unnerving

 

its this bit that troubles me most

because who's version of what happened are they going to use... I know there is a factual timeline, but the narrative can be spun in all kinds of ways & judging from previous BACME 'form' & membership, it makes me very uncomfortable imagining what kind of BS certain members may have beenpresenting to other members