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

[Hutan]

Virtual event
ME/CFS Clinician Reflective Practice Networking Group

Is that safe from patients and from professors and colleagues who write letters?

Pretty safe I think. You have to be a member of BACME to attend. If you are working in the NHS you can become a member; if you aren't then you have to make an application which is considered by the Board. It's 35 pounds per annum to join.

But ..... if any forum members who are across the issues discussed in the open letter are eligible to join, I'm sure we could shout them the 35 pound. It certainly would be great to have someone turn up and challenge the cosy belief seemingly held by most BACME members that they are doing something useful.

 

[hotblack]

Maybe someone will bring the Edwards, Bull and Crawford open letter to their zoom meeting and if so - I really hope they start proper reflection. One can only hope. Sigh.

Thanks for the context @hibiscuswahine it’s a useful perspective. I wish it were going to be such a session with useful reflection, but from everything we’ve seen that seems unlikely. The organisation has sadly never shown willing to engage despite many genuine attempts from people. At an individual level from patients but also at various people and organisationsgoing to them and presenting. I remember a good presentstion from Chris Ponting not that long ago.

Peer review is a small group of specialists who get together, usually monthly, and talk about a case that is troubling them in terms of diagnosis, treatment, relationship with client, carers, their families, government agencies etc. Our colleagues are usually very frank and often challenging especially if they suspect unprofessional behaviour is starting to occur and usually and a valuable resource of knowledge and experience

My concern is precisely that this format and framing will be used not to reflect but to paint themselves as fighting to do good against adverse circumstances and result in another round of attacks on patients, organisations working for change and all the good work people have been doing. Because this is what we have seen repeatedly and they seem to get a special seat at the table with government and influence with the NHS above and beyond what others do.

 

[JellyBabyKid]

The organisation has sadly never shown willing to engage

Because there is a belief mismatch; they think we are genuinely delusional and don't understand that we are not unwell and therefore need to be helped, not enabled, and they have had academic training so know far more than we do and need to be imparters of wisdom.

It is hierarchical and centering academic theory and qualifications over lived experience as a form of knowledge.

They refuse to let go of the idea that we know more about our bodies and experiences.

 

[Jonathan Edwards]

But I wouldn't necessarily see this announcement as particularly noteworthy. Reflective practice is part of Medical practice. As a former consultant in psychiatry, I took part in regular peer review groups, it is a college requirement for the maintenance of vocational registration.

I sense a big difference here though.

We’re looking forward to connecting with you and providing the opportunity to share reflections that support both your practice and wellbeing.

These sessions are not intended to be critical or analytical. They are intended to support practice, through reflections. The antithesis of good ongoing educational practice.

 

[hotblack]

It is hierarchical and centering academic theory and qualifications over lived experience as a form of knowledge.

They refuse to let go of the idea that we know more about our bodies and experiences.

To be fair, that’s very common in medicine and I expect because it is largely right. Most doctors do know more about their patients bodies than a patient’s ‘lived experience’. That is why we go to doctors, why we go to experts of any sort. Which works fine nor slly but obviously not when things go wrong, as in our case.

I dislike the term being used because it likely won’t help us convince other medics and the problem is I think less that lived experience is better than academic theory and qualifications and more that they refuse to look at the evidence and refuse to admit they may be wrong. They put their lived experience above our lived experience but also above the data and scientific method.

Lived experience can also be used in a very dismissing way. I’ve had it done to me. And I’d like to see less focus on it and more on the evidence. Not to say what we have all experienced is not important in terms of framing how we have been treated, but I think it’s better as a supporting aspect not the main argument. And isn’t what those representing us should focus on IMHO.

 

[JellyBabyKid]

They put their lived experience above our lived experience but also above the data and scientific method.

Yes. That's a better way of putting it.

It is a refusal to let go of the belief that "this works, we know It works" in the face of all evidence, not only to the contrary, but of actual documented harm.

Ironic; the false belief issue isn't with patients.

 

[hotblack]

Ironic; the false belief issue isn't with patients.

Absolutely.

 

[Robert 1973]

Ironic; the false belief issue isn't with patients.

Yes. I’m also mindful that there may be BACME members reading this thread who interpret everything we write as confirmation of their belief that it is our beliefs which are at fault – and that Professor Edwards is not only encouraging those beliefs but instilling them.

If that is so, Hello and welcome to the forum. Please read the references in the open letter to BACME and explain to us what you think the authors have got wrong.

FWIW, I used to believe that CBT/GET must help some people with ME/CFS. I couldn’t believe that so many resources could be poured into these NHS services unless there was some evidence that the therapies helped some people diagnosed with ME/CFS, even if they didn’t help me. But then I studied the evidence and I changed my mind. As far as I’m aware there is no reliable evidence that CBT or GET or similar interventions which aim to rehabilitate patients help anybody diagnosed with ME/CFS, even when very loose diagnostic criteria are used.

If you think I’m wrong, please engage with us and provide us with the evidence that contradicts the content of the open letter. As a patient, all I am interested in is the truth – whatever that may be.

At times during the 34 years that I’ve been unwell I’ve tried to convince myself that it is my beliefs and/or behaviours that are perpetuating my illness but it has only ever made me worse.

Many patients have been on similar journeys – challenging our beliefs to such an extent that we have been prepared to accept that we might be deluded in some way, which in many cases has led to a significant worsening of symptoms and disability following increased activity.

If only BACME members were willing to demonstrate even a fraction of such commitment to challenging their beliefs we would surely be closer to the truth and the type of service provision that is needed.

[edit: typos]

 

[Kitty]

FWIW, I used to believe the CBT/GET must help some people with ME/CFS.

I suspect that for some mild and moderately ill people, it may appear to help at first.

When I'm coming out of a flare there's a point at which starting to push through will make me feel much better, cognitively and physically. It's relief to be able to move around, to get out of the house.

It took bitter experience to learn I had to tread carefully and stop at the first sign of major PEM, because that's exactly how a so-called boom and bust cycle starts. Momentum can mask some of the lesser PEM effects, at least for a while. Then of course I'd be flat on my back again.

The trouble is that it can take two or three months to play out, by which time a clinic would have discharged me as substantially improved. If enough people arrive at a clinic at a point in the cycle when they can achieve temporary improvement, it might appear to work. But unless they have self limiting post-viral fatigue, it won't last.

This is what makes me suspicious about the reason the clinics came to offer a fixed number of sessions only. In any other NHS service you'd go back if you experienced a relapse, and you wouldn't have been discharged in the first place if you if you'd failed to improve. The absence of follow-up appears calculated to make rehab clinics look successful by exploiting a feature of milder disease. Light the blue touch paper, then stand well back.

 

[MrMagoo]

Also humans can endure terrible neglect, abuse, pain and so on. Look at people who have been held captive in prisons, or kidnapped and chained up for decades being abused daily.
Just because people can use some “mind over matter” to force themselves to get through hideous daily pain, punishing mental strain and still put on an act that things are ok because life as they know it, and hope for the future disappears if they don’t, doesn’t mean they should.

 

[bobbler]

Exactly, as former longstanding of BACME former volunteers Trustees look to be moving on, like Ceri Rutter...

Time to put their narrative straight.. ??

They are a trade organisation for HCPs, to serve members, not to embrace 'Lived Experience' not patients or their carers!!!

That goes against co production principles enshrined in the 2014 Care Act!

I'm trying to understand BACME a bit more and looking at the following document: https://register-of-charities.charitycommission.gov.uk/en/charity-search?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=2&p_p_state=maximized&p_p_mode=view&p_p_resource_id=/accounts-resource&p_p_cacheability=cacheLevelPage&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_objectiveId=A16505135&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_priv_r_p_mvcRenderCommandName=/full-print&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_priv_r_p_organisationNumber=5150906#:~:text=Conference is,the relief of sickness by

Which is a few years out of date as it is the annual report up to end Mar 2024.

Under the section on governance it confirms process for selecting trustees. And what positions are in organisational structure:

The Board has a Chair; Deputy Chair; PPI Lead; Education and Training Lead; Editorial Lead; and Treasurer. During this time period there were 4 PPI trustees including the PPI Lead and

There isn't an end to this sentence on the document (bottom of page 9)

But I noticed here they have 'PPI trustees'

Does this mean that all pwme that they use as PPI have to be trustees?

There is a list of what boxes one must tick to be a trustee which seems to include agreement with BACME constitution and being a professional in one of the areas or..

"In the case of patient and carer representatives, trustees must have direct personal experience of the condition, either as a patient or carer and be affiliated with an ME/CFS service delivering care in line with BACME objects."

 

[Trish]

Your link doesn't work for me. I googled Charity Commission BACME and got straight to their page.

The BACME website gives information about board members, what BACME does etc.

 

[bobbler]

Your link doesn't work for me. I googled Charity Commission BACME and got straight to their page.

The BACME website gives information about board members, what BACME does etc.

I’ll look back at the link when next on laptop (I thought it seemed an annoyingly long url when I posted it) as it’s there - it was something that came up via search for certain terms rather than via their website - I’m glad if those same documents are also available to access as I’ve found the bacme site itself has a lot under membership only access.

This was posted in response on another thread and has moved but was mainly focusing on that it seems rather unusual that their PPI ie ‘patients’ are trusteees . In response to the suggestion of one might be moving on its context as to what might be involved with replacing them.

Which in itself isn’t necessarily all bad or good (ie there could be good versions where it means those giving input are at the top of the listening decision tree above other inputs) but it is how many, who, why and so on that relate to how representative it really is

And I thought it interesting that there were such bars involved with being PPI that are the same as trustees who are professionals and what ‘agreeing with the constituon’ is etc

Does ‘being a member of bacme for at least 6months’ before a vote also apply here?

How do these criteria limit the impact of any turnover meaning people not with the same aims/views etc in any succession should those currently doing PPI move on?

 

[Dolphin]

Neurodivergence in children and young people with ME/CFS - BACME

This webinar will explore the intersection between neurodivergence and ME/CFS in children and young people, an area that is increasingly discussed but still under-researched. It will include: A summary of […]

bacme.info

Neurodivergence in children and young people with ME/CFS​

March 17 @ 6:00 pm - 7:30 pm
FREE
This webinar will explore the intersection between neurodivergence and ME/CFS in children and young people, an area that is increasingly discussed but still under-researched. It will include:

• A summary of the current evidence and emerging research
• Reflections from professional and lived experience
• Key questions and uncertainties in this area

This webinar is not intended as expert guidance or definitive teaching. Instead, it aims to support shared understanding, critical thinking, and discussion in an evolving and complex area.

This session draws on clinical experience of working with children, young people and young adults, with transferable learning for adult services, particularly ME/CFS, Long COVID and neurodivergent presentations.

Vic Harbottle is a paediatric physiotherapist at the Great North Children’s Hospital in Newcastle upon Tyne. She works between a paediatric fatigue service, looking after CYP with ME/CFS, post COVID and other fatigue presentations, and a paediatric pain service.

 

[Dolphin]

ME/CFS Clinician Reflective Practice Networking Group - BACME

BACME is providing a safe space for clinicians to connect, reflect together on clinical challenges, share practical insights, and reduce professional isolation. Our goal for these sessions is not to […]

bacme.info

ME/CFS Clinician Reflective Practice Networking Group​

April 15 @ 9:00 am - 10:00 am
FREE
BACME is providing a safe space for clinicians to connect, reflect together on clinical challenges, share practical insights, and reduce professional isolation. Our goal for these sessions is not to provide patient-specific solutions or debate best practice, but to support one another and learn from shared experience using a reflective practice approach. Discussions should be consistent with the current NICE guidelines for ME/CFS, while recognising the complexity of real-world practice.

Sessions will be held every couple of months and via Zoom.

We’re looking forward to connecting with you and providing the opportunity to share reflections that support both your practice and wellbeing.
Add to calendar

DETAILS​

• Date:April 15
• Time:
  9:00 am - 10:00 am
• Cost:Free
• Event Category:Members

ORGANISER​

• BACME
• Emailinfo@bacme.info
• View Organiser Website

This is a members only event, please login if you wish to attend

 

[Peter T]

It is hard to imagine a group that puts out the materials BACME has being helpful arbiters for ‘clinical best practise’.

 

[Suffolkres]

Neurodivergence in children and young people with ME/CFS - BACME

This webinar will explore the intersection between neurodivergence and ME/CFS in children and young people, an area that is increasingly discussed but still under-researched. It will include: A summary of […]

bacme.info

Neurodivergence in children and young people with ME/CFS​

March 17 @ 6:00 pm - 7:30 pm
FREE
This webinar will explore the intersection between neurodivergence and ME/CFS in children and young people, an area that is increasingly discussed but still under-researched. It will include:

• A summary of the current evidence and emerging research
• Reflections from professional and lived experience
• Key questions and uncertainties in this area

This webinar is not intended as expert guidance or definitive teaching. Instead, it aims to support shared understanding, critical thinking, and discussion in an evolving and complex area.

This session draws on clinical experience of working with children, young people and young adults, with transferable learning for adult services, particularly ME/CFS, Long COVID and neurodivergent presentations.

Vic Harbottle is a paediatric physiotherapist at the Great North Children’s Hospital in Newcastle upon Tyne. She works between a paediatric fatigue service, looking after CYP with ME/CFS, post COVID and other fatigue presentations, and a paediatric pain service.

Looks like BACME are expanding their' fatigue 'empire..

 

[bobbler]

It is hard to imagine a group that puts out the materials BACME has being helpful arbiters for ‘clinical best practise’.

it feels really inappropriate to be encouraging physios to label people with or look out for things that they are not qualified for.

It would be one thing if it was an outside expert in both neurodiversity and who was properly up to speed with me/cfs telling those in BACME how they can be understanding. Along with the patients who actually are expert in it due to having had it a long enough time they have been through the nonsense 'be hopeful and push through' crap to find out what that experiment did to their body. And lived through trying different environments eg at school or work.

But I have a feeling this crosses lines and if it does so then if we had a working system that should be seen as serious. It isn't healthy to be encouraging those not qualified to be going around looking for judgements in people and making them self-conscious (which in turn an unqualified person then interprets wrongly too) when they are seeking support for something else

I really think this issue of hiding all this stuff behind the term 'multidisciplinary' and nonsense to be ambiguous needs strongly bringing up.

It is really really wrong to have what ends up being a dystopia where you've schoolteachers and physios and OTs with no proper degrees or long-term experience in medicine or proper psychology that has the full background (not a niche PhD in pain management that you can call psychology but doesn't involve doing the full background that could even mean you are bringing that general full-breadth education to it) doing things that noone should be doing unless someone has asked for it and been through the proper process

- it means you are a sitting duck to people 'playing at other things' that have huge implications and, relevantly for me/cfs take a huge amount of energy and time they won't have to counter, having wandered into an appointment that on the other hand WON'T give proper support and understanding for what it's funding and title suggests it 'is in the name of'. Appointments they often can't avoid and are coerced into by circumstance.

And it is a terrifying blight and misuse of position and power for those already vulnerable to be put through.

Can you imagine having cancer and instead of being respected and treated for that you get people talking behind your back about a quirk you might have, how you interact with family, the impact of their behaviour and calling a normal reaction to what is frankly weird and so abnormal it shouldn't be happenning behaviour from such teams whatever they like (because if you aren't qualified and doing it then you don't have a license to lose and aren't being oversighted) even though obviously you are pretty ill and in a situation making you intimidated and needing focus on the answers that matter to not impose stress/be driving you mad

vs having cancer and getting treatment and those doing it are experts in the illness and cancer treatment first and foremost but to be appropriately sensitive to ND etc eg have training and advice on process, equipment/layout/spaces from autism experts and long-term patients who had eg autism and have many years of going through similar situations to make sure they have adapted their behaviour, not to label, but to make sure that it is 'autism-friendly' as much as a process can be made such.

 

[MrMagoo]

It’s basically gossiping,

 

[bobbler]

Oh and PS for most things that involve sensitivity and the true meaning of the 'holistic' word (not hurting a person in one way to supposedly help them with something else by not understanding eg what they have on their plate) most of these things do not at all require these people to label or identify (unless they themselves bring up certain issues and want a referral). Just offer options that anyone can request if they need it because after all the more exhausted someone gets eg after havnig travelled to an appointment the more eg clear communication and less sensory would be helpful to anyway. And if they have someone with a diagnosis then it should probably come with them giving a list of adaptations they would ask for too - which I'd expect would be the focus not 'different presentations' but 'different needs you should be adapting to provide'.

It seems rather back-to-front in a lot of places, everyone wants to be staring and judging as their job and making someone feel weird by calling them that whilst putting them in a weird hairs-on-back-of-neck situation instead of what is actually required of most of them which is to not be belligerent to individual differences. And to adapt their behaviour and processes to not exclude. It is like the phrase that if you make the world accessible for the most disabled then it often helps everyone, and because people get old or break their leg or want to do something with someone who has etc.

In this case there might be occasions they need to be aware of varying what they do if someone has specific needs that someone without that wouldn't find great, but a lot of these things often should just be trained in without them needing to know or label that person at all. And if they want that assessment then find an expert (and have leaflets available for them in case) and train one in ME/CFS properly with PEM etc so they can be aware of adjustments for that.

I'm sure we could come up with some ideas of what they should do differently just from our various laypersons and individual knowledge. And I'm not sure the term 'knowing the different presentations' is necessarily top of the needs to be on there to do that? 'understanding why x is an issue' might be different as long as unqualified people aren't extrapolating that to think they then have expertise in that (rather than it being said in order to encourage them to act appropriately towards people, not parrot what they think is expertise rather than 'just enough for you to understand enough you'll act better').

So it would be interesting to see which this training is.

People in more admin positions will have training in sensitivity and understanding (particularly if they have an aspect of front-line with 'customers' but also for other staff) needs in order to make processes more appropriate and be able to communicate better etc. They don't misinterpret that as anything more than bettering themselves and their behaviour, instead of thinking they are experts in 'spotting them' or should start labelling others.

There seems to be a weird thing with certain professions - maybe it comes from siphoning off how funding works if you can term someon as 'complex' thereby claiming they 'required more time' for you budget (?) which doesn't always marry appropriately anyway because the time comes often not from the person themself but the staff member acting in such a way they make said communication more difficult or string the appointment out because that person fainted due to no chair or long waits