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

Rhonda Knight is described as:

"Rhonda Knight BACME Trustee and Patient Representative", as co-author of the BACME PEM leaflet.
Her description per the Trustee leaflet, does not say that she has ME/CFS

"About Rhonda Knight
BSc, PG Dip. Dietetics, PG Dip Counselling, RGN (retired), PGCE
Rhonda was a senior lecturer in Adult Nursing at the University of the West of England in Bristol after working as a senior nurse specialising in working with people with dementia and their families in acute medicine, and is now a service user representative. Since her retirement from the university, she has been co-opted as a volunteer at North Bristol Trust, where she co-facilitates the MBCT programme as well as many other projects, education/training and research that needs the participation of a service user, both in the hospital trust and at the university."

I have no doubt that the patient/carers are carefully selected.....
 
From: Dr. Marc-Alexander Fluks


Source: British Association of Clinicians in ME/CFS (BACME) Date: October 23, 2023 URL: https://bacme.info

BACME 2023 National Services Survey Report ------------------------------------------

The BACME team are pleased to announce publication of the 2023 National Services Survey report. The report is now available to download from the BACME website or using this link:

https://bacme.info/wp-content/uploads/2023/10/BACME-National-Services-Survey-Report-Oct23.pdf

This has been a big project and has led to us being able to provide a very comprehensive view of the current provision of specialist ME/CFS care in the UK.

We are grateful to all the individuals and organisations that have supported us with this piece of work including with the development of the survey and providing feedback on the report.

We have highlighted BACME's key recommendations at the end of the report and these align with the actions listed on the DHSC interim delivery plan report. The top priorities for the clinical community are: * To support improved awareness and education across all medical, social care and welfare services * To expand the provision of specialist training about ME/CFS * Increase the medical involvement in specialist ME/CFS care to facilitate improved access to diagnosis, investigations, new treatments and clinical research. * Increase the provision of specialist care across the UK and for children and young people and people who are severely affected

We are keen for this report and the recommendations to be circulated widely so it can be used to increase and improve the provision of specialist care to people with ME/CFS across the UK.

If you would like to provide any feedback on the report please get in touch at info@bacme.info

Kind Regards

Dr Vikki McKeever BACME National Services Survey project lead

Anna Gregorowski BACME chair

The BACME National Services Survey team
https://twitter.com/user/status/1716819539034620227
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This report is discussed in United Kingdom: BACME 2023 National Services Survey Report
 
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From: Dr. Marc-Alexander Fluks

Source: British Association for CFS/ME (BACME)
Date: November 16, 2023
URL: https://bacme.info/


BACME Severe ME/CFS Shared Clinical Practice Guide
--------------------------------------------------

The latest edition of guidelines for clinicians managing those affected severely by ME/CFS is now available here,

https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf

https://twitter.com/user/status/1725481693887316235
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Dolphin said:
From: Dr. Marc-Alexander Fluks

Source: British Association for CFS/ME (BACME)
Date: November 16, 2023
URL: https://bacme.info/


BACME Severe ME/CFS Shared Clinical Practice Guide
--------------------------------------------------

The latest edition of guidelines for clinicians managing those affected severely by ME/CFS is now available here,

https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf
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On1y skimmed it, but noticed unevidenced theories, a dominant micromanagement approach and there's sti11 'pacing up' recommended. So not something I'd be using with any hea1thcare professiona1s.

Sti11 using termino1ogy 1ike 'negotiating [a management p1an]', with hints of patient b1aming (reasons given for why patients may not want to engage with therapists etc.).
 
I read some of the guide. At first I thought it was pretty good on management of severe and very severe ME/CFS because it includes some of the stuff from the NICE guidelines about needing low sensory and accesible care, side rooms in hospitals, and some needing feeding help including tube feeding.

But you're right, @Simbindi, I was dismayed to see unevidenced theorising and the pacing up style of management. They have not let go of the delusion that if you increase activity and exposure to sensory stimuli in small enough increments negotiated by the therapist with the patient you can somehow trick the body into improving its functional capacity.

And they only tell upbeat stories of individual patients who have improved and attribute this to the therapists' intervention and patients following their advice. What they don't mention is those who follow exactly the same advice and get sicker.

I have no idea who their patient advisors on this are. I'm sure they mean well, but perhaps it's inevitable that people chosen by a therapist group to advise are from among patients who have been fortunate enough to improve, and attibute it to this approach.
 
Trish said:
But you're right, @Simbindi, I was dismayed to see unevidenced theorising and the pacing up style of management. They have not let go of the delusion that if you increase activity and exposure to sensory stimuli in small enough increments negotiated by the therapist with the patient you can somehow trick the body into improving its functional capacity.
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Yes. On the one hand ME/CFS is understood to have natura1 f1uctuations over time (both short term and 1ong term) but then any improvement is put down to therapist intervention and patients comp1ying with micromanagement.

I get that many patients wi11 natura11y attribute improvements to things they may or may not have done, we can't expect 1ay peop1e to understand how c1inica1 science works (or shou1d work...). But there's no excuse for professiona1s not to ensure they understand this.

The 'graded exposure' approach has been forced on autistic peop1e (most1y chi1dren) for decades. It doesn't work, it's taken the more ab1e autistic se1f-advocates to cha11enge this on beha1f of chi1den, young peop1e, non verba1 and autistic peop1e with additiona1 1earning disabi1ities who haven't been ab1e to articu1ate the prob1ems.

Sometimes other things improve in the body that enab1es improved sensory to1erance. For examp1e, since having my cataracts done in both eyes I can to1erate 1ight much more than before. I'm sti11 sensitive to it, but don't need to be in a darkened room a11 the time. Obvious1y having these eye operations have done nothing for my other sensory sensitivities/a11ergies. But it seems having the cataracts (which wou1d have been deve1oping for years) scattering 1ight in my eyes made my 1ight sensitivities more extreme. I expect many severe and very severe ME/CFS sufferers have the same issue, especia11y if they are on steroid treatments.

It wasn't unti1 my cataracts became extreme (and I 1ost sight comp1ete1y in one eye) that they were taken serious1y by the optician/hospita1. Given how hard it is for severe ME sufferers to access opticians and how painfu1 a sight test is (with a11 the 1ights shined into the eye etc.) these comorbidities are 1ike1y to be contributing to sensory issues. No amount of 'graded exposure' wi11 improve things, what's needed is proper medica1 monitoring and care of PWME to ensure no other conditions are being missed.
 
graded exposure is so insulting. as if we havent tried it ourseleves

and in any case, i dont know about you but it works the opposite way-

when i well rested and been in silence i can tolerate quite a lot of stimulation & enjoy it. but as i begin to 'tire' it becomes more & more overwhelming causing a total crash, just completely unable to move or think or communicate.

They seem to think its like turning the 'big light on' when you've been in darkness - so it hurts cos youre eyes are not used to it.

Do they think i am a ____ 5yr old!
we are not stupid, if gradual increased exposure worked we'd all be in the light with the radio on!

I dont eed a therapist to teach me how to acclimatise my senses! it doesnt @$^£%@! work!:banghead:
 
JemPD said:
graded exposure is so insulting. as if we havent tried it ourseleves
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It's a form of ableism. I saw it a11 the time when I was working in a schoo1 - autistic and 1earning disab1ed young peop1e being forced to stay in noisy c1assrooms as they became more and more distressed. I'd make the decision to take them out when they were with me, then get in troub1e with the SEN 1ead for not being in the c1assroom for other kids (who I wasn't technica11y supporting as I was taking out high need SEN kids who were entit1ed to one to one support according to their educationa1 p1an and funding). This was before I had my own ASD diagnosis, but I understood the sensory prob1ems from the inside as I'd experienced them myse1f not just with the ME but a1so from chi1dhood. It seems those who haven't persona11y experienced the pain invo1ved just can't understand it. It used to take me a11 weekend to recover from one horrendous drama c1ass that I was put in on a Friday afternoon.
 
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JemPD said:
graded exposure is so insulting. as if we havent tried it ourseleves

and in any case, i dont know about you but it works the opposite way-

when i well rested and been in silence i can tolerate quite a lot of stimulation & enjoy it. but as i begin to 'tire' it becomes more & more overwhelming causing a total crash, just completely unable to move or think or communicate.

They seem to think its like turning the 'big light on' when you've been in darkness - so it hurts cos youre eyes are not used to it.

Do they think i am a ____ 5yr old!
we are not stupid, if gradual increased exposure worked we'd all be in the light with the radio on!

I dont eed a therapist to teach me how to acclimatise my senses! it doesnt @$^£%@! work!:banghead:
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And stupid. To have come up with the idea nevermind decide to test it you’d have to be stupid snd have a problem mindset anyway.

these behaviour management wanna-jobbers cos they don’t fancy doing the other stuff is a major issue snd it doesn’t come from good thinking but bad bigoted stuff. Psychosomatic snd all this cruel degenerative attitude used to be laughed at as a ‘subject’ they’d have to mention on a BSc because we had to know it existed to critique snd keep an eye on it as a ‘para-subject’ ie a pretended but also because it’s the old fashioned cruel thicko presumption the science of psychology was started for to improve on -it’s always harmed and never been either ‘medicine’ or ‘good for peoples mental health or health’. Just some peoples attitude to assuming if someone behaves differently then ‘just make em change by using threats and carrots etc’ and pretending that doesn’t make what that’s a symptom of much worse (and if it did change that then the issue just pops up in s different form). I don’t know how it had the cheek to invert that situation and pretend otherwise other than those who like going that sort of thing will believe what they want and see what they want ie ‘because people want to believe that what they want to do as a job is helpful’
 
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Simbindi said:
It's a form of ableism. I saw it a11 the time when I was working in a schoo1 - autistic and 1earning disab1ed young peop1e being forced to stay in noisy c1assroom as they became more and more distressed. I'd make the decision to take them out when they were with me, then get in troub1e with the SEN 1ead for not being in the c1assroom for other kids (who I wasn't technica11y supporting as I was taking out high need SEN kids who were entit1ed to one to one support according to their educationa1 p1an and funding). This was before I had my own ASD diagnosis, but I understood the sensory prob1ems from the inside as I'd experienced them myse1f not just with the ME but a1so from chi1dhood. It seems those who haven't persona11y experienced the pain invo1ved just can't understand it. It used to take me a11 weekend to recover from one horrendous drama c1ass that I was put in on a Friday afternoon.
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Yes. And that’s so painfully out of date. It was known 30yrs ago you don’t leave a child in a painful situation snd think you train the disable d lest the teachers don’t need to adjust a teensy bit and learn. Why they think boiling a child over ‘helps’ or is a sensible point to work from - well that was just then being stupid and focusing on what worked for them. Then refusing to accept the consequences were of their own behaviour and choices by ignoring the facts. Like the kid who breaks the toy then shouts at it for being broken.

you’d think people would have had to have become more knowledgeable and better over that time but certain sectors seem to have revelled in recidivism and gone backwards on knowledge snd brains being part of what they do in this. It sounds like the awful stupid simple to do simple does attitude taught in the sixties by certain colleges as an attitude that some thrb carry as if it applies to everything snd switched off their brain to learning anything themselves since. But who knows maybe something bad has happennef yo take the literature backwards here like the gerrymandering in me/cfs thru dodgy research standards being allowed and psychosomaticists/ behaviourists taking advantage? I’d be intrigued to know?
 
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Simbindi said:
On the one hand ME/CFS is understood to have natura1 f1uctuations over time (both short term and 1ong term) but then any improvement is put down to therapist intervention and patients comp1ying with micromanagement.
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And if the patient doesn't improve, or gets worse, then it must be the patient's fault for irrationally resisting 'treatment'.

Under no circumstances can the therapist be to blame, apart from not 'explaining the treatment' properly.
 
Dolphin said:
From: Dr. Marc-Alexander Fluks

Source: British Association for CFS/ME (BACME)
Date: November 16, 2023
URL: https://bacme.info/


BACME Severe ME/CFS Shared Clinical Practice Guide
--------------------------------------------------

The latest edition of guidelines for clinicians managing those affected severely by ME/CFS is now available here,

https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf
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I haven't read it in full myself, but trust those who have and put their comments.

Is this, given it is severe and very severe, so there is no room for 'its a spectrum' type things but they really should be getting these are people of illness levels most won't have seen before so haven't 'factored into' their models/ideology they might have as the perception of the illness, not a real big issue to the point of being a red flag?

I'm genuinely really worried that we are 2yrs in and this has been produced by people who might be allowed to not only continue in roles but now be around those who are at this level and 'speaking for' the condition.

And the making up stuff 'so that people understand' when they could have er you know ... just not had to have made stuff up so it fitted what they wanted to do (and reduced their cognitive dissonance) but actually started with the correct facts and then changed what they thought ... I mean how is it really excused with that pat cliche to themselves?

THis storytelling 'habit' of certain behavioural ideologies is a massive problem in them choosing not to be scientific or medicine. In fact they are the cause of propaganda and misinformation problem and get in the way of both evidence and clinical-based decisions. ... 'because its got to fit the story that's nice and easy to remember and repeat' and the story becomes unquestionable, even when its as made up as a mnemonic to remember things?
 
Fizzlou said:
MEAssociation looking for document feedback (FB)
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Are they giving a very decent length of time on this occasion for said feedback given it really does need to be weighted to those who have severe and very severe or direct experience of it (past and present). And given the other committments said group often has on vs 'no spare' and that the consultations just recently mean any 'support' is in a recovery period from dealing with all of that?

It would be highly inappropriate for them to move forward, as people who are claiming to be 'more expert' than e.g. govt stuff which deals with healthy general population, without having given an exemplar appropriate adjustments so that the time period and manner of doing this is accessible to the right people

And it would also be disconcerting if there aren't reassurances that such a group - who this would perhaps be a huge undertaking even then - will definitely have their feedback heeded and it isn't 'token' should they make such a gargantuan effort. And I use that phrase based on how far off this seems to be?

Or is there an easy way where e.g. ME Association already perhaps suspect there will be serious concerns (and a lot of work) and people can do a simple few lines to say this needs to halt - what implications does this have and what 'train' is this in? ie are lots of things just going to automatically go ahead and cascade from this?
 
Pacing Strategies As indicated previously, there is no clear evidence base for the treatment of severe ME/CFS and most specialist services will adapt their approach to individual need. The initial goal is to enable individuals to find ways to better balance their activity and quality rest within their immediate limitations to establish more predictable and maintainable patterns of activity. If stability is achieved, this in due course can be followed by a slow stepwise upward grading to achieve sustainable and meaningful change, while monitoring for any change in symptoms.
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The therapist needs to help the individual consider the impact of activities such as:- talking, texting, looking, listening, washing, worrying, thinking, changing position, eating, drinking.
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avoidance of external stimuli can make matters worse in the long run and it is important that it is graded not avoided
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4.3.1 Sleep and re-establishing a diurnal rhythm
..........................Much of this work has been shown to be beneficial in chronic pain www.sciencedirect.com/science/article/pii/S1389945710000146
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Section 6: Outcome measures 6.1 Why use outcome measures? • As a therapeutic tool, to allow therapist and patient to track and reflect back on any improvements in the individual’s recovery process • To evaluate the benefits of service input, for example, to produce data to feed back to commissioners • To generate health economic data to inform decision makers within the NHS • To provide evidence to funders It is important to recognise that completing questionnaires can take a lot of mental effort for a patient who might be only able to tolerate a few minutes conversation at one time or who may have 'brain fog' which makes reading and writing difficult. Nevertheless, for the reasons given above, we suggest that all services should consider incorporating basic outcome measures into their work with severely affected patients wherever possible. Outcomes may be recorded by patients themselves (Patient reported outcome measure - PROM) or by Clinicians (Clinician reported outcome measure - CROM), though the latter can be carried out with the patient.
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6.2 PROM (Patient reported outcome measure) The BACME 2023 National Services Survey shows that there is a wide range of outcome measures being used in specialist services. Many services continued using tools included in the National Outcomes Database established in 2006, despite this central collection of data no longer being operational.

Commonly used measures include: SF36 Chalder Fatigue Scale Pain severity measure Clinical Global Impression Scale (CGI) Hospital Anxiety and Depression Scale (HADS) pHQ9 Depression Questionnaire EQ5D 5L Self-efficacy measure BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services.
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section I find most troublesome
Appendix A: Authorship and acknowledgements (Alphabetical order) BACME Severely Affected Working Group contributors Dr Hiroko Akagi, Leeds and West Yorkshire CFS/ME Service (retired) Ms Dorrett Erskine, Birmingham CFS/ME Service Ms Sue Luscombe Nutrition and Dietetic Service. Bedfordshire Hospitals NHS Foundation Trust, BACME Executive/Member Dr Clare McDermott, Department of Primary Care and Population Science, University of Southampton Ms Anne Nichol, CFS/ME Service for South Yorkshire and North Derbyshire Ms Hilly Quigley (previous member) Oxfordshire CFS/ME Service (retired) Dr Selwyn Richards Dorset CFS/ME Service Ms Ceri Rutter Plymouth and District ME/CFS group, BACME Executive Ms Michelle Selby, Dorset CFS/ME Service
Ms Mary Jane Willows, Chief Executive AYME and BACME Executive (retired)

We would also like to acknowledge and thank the additional contributions and feedback from :
BACME executive members Ms Jessica Bavington, Vitality 360, BACME Executive Prof Diane Cox, University of Cumbria, Lancaster Prof Esther Crawley, University of Bristol Ms Emma Cross, BSc Univeristy of Leeds Dr Lesley Godfrey, Priory Medical Group, York Ms Hilary Hogg, RD Lead Community Dietitian, Plymouth Dr Christine Johnson, Priory Medical Group, York Dr Vikki McKeever, Leeds CFS/ME Service, BACME Executive Prof Julia Newton, Newcastle University and Royal Victoria Infirmary, Newcastle-upon-Tyne
Dr Hazel O’Dowd, Bristol CFS/ME Service Dr Sue Pemberton, Yorkshire Fatigue Clinic, York Mr Russel Saxby, National Inpatient Centre for Psychological Medicine, Leeds (retired) 45 Dr Peter Trigwell, National Inpatient Centre for Psychological Medicine, Leeds Ms Carol Wilson, Cornwall and Isles of Scilly CFS/ME Service (retired)
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Why are MEA asking severe - never mind very severe - patients to waste non-existent resources commenting on material which disregards the NICE guidelines and is both absurd and offensive?

MEA should be providing their own rebuttals, and offering a structured way for v/severe patients - and their carers - to contribute as best they can.
 
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