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

Is the guidance mentioned on the Position Paper thread now obsolete (from October 2020)?
It certainly needs some attention.

 

If you mean the documents just linked by SlySaint, then no - these are fresh out the oven / cutting edge!

 

Oh dear.

 

Yeah. They're all six months old, but I don't expect them to change anytime soon. It is my understanding that these have been revised with the draft guidelines in mind.

 

Ok, I take your point, but I think "conflict of interest" private work or association should be flagged up as a requirement?
'Rehabilitation'/ recovery services are to be big business post/long covid.

PACE was muddied by DWP and similarly no one has dealt with Faculty of Occupational Medicine (FOM) NHS Heath at Work issue. NICE say they have no jurisdiction over NHS Health at Work!.. so who does?


http://occupationalhealthconferences.com/
RE-SCHEDULING OF OCCUPATIONAL HEALTH 2020 CONFERENCE AND EXHIBITION - update as of 1st June 2020:

After careful consideration of the situation relating to the Coronavirus outbreak, the Society of Occupational Medicine and the Faculty of Occupational Medicine have taken the decision to postpone the Occupational Health 2020 Conference and Exhibition and re-schedule to July 2021, at the same venue in Edinburgh.
Further details will be confirmed in due course.
Thank you for your understanding and continuing support.


NB It's still around......
https://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_employees_leaflet.pdf

https://www.nhshealthatwork.co.uk/chronic-fatigue.asp

 

BACME conference 2020/1 - creative approaches in CFS/ME services - rescheduled to 11 May 2021

Just a few tangential thoughts on AfME attending:

There are times to work from inside and times to not. IMO things have gone badly in the past because of a mistaken belief in compromise which is a political organisational concept.

Politicians compromise; with regards to a medical position this is not really appropriate. And that has been a problem. Compromising has only ever led to bad outcomes for PwME.

So, as long as AfME stay the course having them in a position to speak truth without being influenced to compromise is all good IMO. It may prove to be futile but worth the attempt. I would only caveat that if there is no change that one shouldn't go on pursuing things in futility but take some other tack.

The BACME crowd have too many conflicts of interest so I personally don't expect any useful change from them.

 

Even ignoring their long history of misguided 'compromises' with those making life worse for people with ME/CFS, would you really want AfME speaking their truth to people at BACME?

 

I have been very critical here about many things including AfME. But my position is to take it one day or one action at a time. I think there has been real change at AfME with how they view BPS treatment of ME. If they go in with the idea of compromise then for me that will be a piece of useful data going forward as to their position.

Another way to put it is I am hopeful that AfME will take a stand for patients. I am prepared to be wrong. And if they do not as you are suggesting 'do the right thing' then I think bringing that out into the open is also a good. Of course you could question whether that would be open for us to see. I say that every time AfME or any organisation or person do something it tells us something if we pay attention.

There is no perfection. Even when on the right side of an issue errors are made. We're all human. That has to be accepted when dealing with any of this. We all just muddle along.

So as a conclusion, yes I think it is worth giving AfME the opportunity to go to the BACME thing and suss out the situation there.

It can be one way for us to (possibly) assess where AfME are at. And we must continue to do so. Always assessing with every new piece of information.

History is informative but history also evolves moment by moment.

 

One important question here would be the scope of this conference. Is it just a mutual admiration society for the CBT industry lobby that is BACME? Or does it actually involve other people that can be influenced?

Because BACME cannot be influenced, their entire thing is a denial of reality. But do they actually reach other people in such a conference? If they do, it's worth being there to correct the record, though it's only worth it if it's explicit that it is a completely different perspective that is incompatible with the very existence of BACME. Which I'm not sure they will be OK with, contrary to their empty words about being open-minded to different explanations, they are all about the one true explanation that they believe in.

Is it possible to know that? From past conferences? Frankly BACME seems like an irrelevant player in itself, trivial compared to the influence that exists in formal institutions like the way Wessely and Gerada abused.

 

The dysregulation model is most likely a reference to an assumed dysregulation of the HPA axis, for which there are no tests available, as I was informed by Sue Pemberton, during my brief time as an outpatient at Leeds CFS/ME clinic. As to the practical application .. it will still likely be a graded activity therapy model.

Wishing you all improved health and every happiness. ☺

 

As a lot of AfMEs literature and general guidance has been created/updated with members of BACME and they have worked with BACME for a long time (particularly Mary-Jane Willows formerly of AYME) the lines between the two 'truths' are rather blurred.

 

The James Lind Priority Setting Process aims to reach as wide a rang of PwME as possible, so "advertising" it through current clinics is important to reach thosewho may not yet be part of online or other support groups.

 

Mary-Jane Willoes retired from AfME last year.

 

https://www.actionforme.org.uk/get-information/about-us/president-patrons-and-advisors/

https://measussex.org.uk/about-us/
https://measussex.org.uk/links/


Action for M.E.’s
2016 – 2021 strategy

https://www.actionforme.org.uk/uploads/2016-2021-strategy-revised-aug-2018.pdf

 

the current BACME Board
https://www.bacme.info/sites/bacme.info/files/BACME Board Members Oct 2020.pdf

some members details:

 

Is this from their website?

 

yes.

 

https://www.bacme.info/civicrm/event/info?id=11

The aims of this event are:

• To share experiences of the impact of Long-COVID on specialist CFS/ME services, professionals & patients
• To receive updates on national and local progress on the integration of specialist fatigue management pathways within Long-COVID rehabilitation services
• To receive an update on current and planned research programmes including how to be involved
• To establish useful relationships and contacts with professionals working in the field of fatigue management and Long-COVID
• To plan next steps for specialist CFS/ME services & BACME