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?