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

My GP also says ME and in my experience those who don't say it don't understand it at all. It's really dismaying that it's getting worse, to now just being referred to as "chronic fatigue" by a lot of the younger doctors. I hope there is a strong education effort.

 

To be pronounced Bam! - 'eck! (heck)...

Cross posted with @Hutan!

 

I was thinking they couldn't use BAME - which would be the simple choice - due to its meaning as "Black, Asian & minority ethnic".

 

Or the British Association of Clinicians for ME/CFS (stays as BACME)?

 

Therapists come under clinicians I think. Moreover, it would do no harm for BACME to include all clinicians.

Therapist organisations are pretty much by definition professional self-help groups. What is needed is an organisation that is centred around learning rather than meal ticket. In rheumatology we moved from the British Association for Rheumatology and Rehabilitation to the British Society for Rheumatology specifically to abolish a purely professional body and to make it a place for learning - for science in effect.

 

It's about a decade since any of my clinicians referred to it as anything other than CF. Thats every specialty - dermatology, neuro, gynae, GP, ANPs, nurses, all of em. It really gets up my nose, but when you try to correct they just give you a sneer or a withering look.

 

What we need is a new NICE guideline to be developed and published ... why has no one thought of that I wonder ...

 

Enough of those and you'd get a Norwegian guideline.

 

Yes. At least I did now it just seems the norm for me.

Due to my personal situation when I first got sick I had the "through the rabbit hole experience" of one day being my usual self and the next , by virtue of a few simple letter added to my medical records, discovering it meant I was viewed & treated as a completely different person.

First of all most of the health care professionals I met steadfastly refused to take me seriously and gave me the distinct impression I was an hysteric. Of course it's impossible to deny you're hysterical without sounding defensive and hysterical. Then I was presented with questionnaires with questions like -

Do you feel that no one understands you?

Yes - then you are obviously have some mental health issues and so we are right.

No - then you feel I understand you perfectly and therefore I am right and I think you have mental health problems.

Frankly, they made me doubt my own sanity. Then I copped on and realised that none of this was about me, it was all about someone else's agenda. Just because you're paranoid doesn't mean they're not out to get you and all that.

Edit - typos

 

the formation of the CCRNC
(CFS/ME Clinical and Research Network and Collaboration)"
" it was the precursor to BACME"


(https://meassociation.org.uk/2010/0...ing-role-of-new-body-for-mecfs-professionals/).


https://me-pedia.org/wiki/BACME

(mepedia info is out of date)

 

I'm probably misremembering, but I thought BACME was formed after the first English and Welsh clinics were funded in c.2005. It was basically all the founders of those clinics who came together to form BACME to represent their interests.

But a quick Google suggests it was formed in 2009 (Tuller) or that it was formed prior to 2007, since it was a stakeholder during the development of CG53.

So maybe someone else knows which story is true?

 

https://web.archive.org/web/20101211083628/http://www.bacme.info/aboutbacme/

 

Wow. It's actually hard in most circumstances to miss 100% of your objectives.

But of course those are for show, the organization is a lobby group that exists to promote the interests of its members, nothing else. I don't think it can be reformed into anything useful.

 

I think this was in the first flush of enthusiasm - right before "austerity" came in with the new Government in 2010 and before everything in the NHS, that wasn't so before, was fractured into separate competing cantons by the 2012 Health & Social Care Act. In 2009 I think it was envisaged that there would be one stop shop clinics created around the UK which from the point of GP referral would do the whole bundle of assessment, diagnosis, treatment (such as that might have been !) occupational support etc.

I think it's important to remember that a lot of our (UK patients) current difficulties are part of a decade long decline in NHS ambition.

 

Whether it can be reformed or not I don't know. What I see is a group NHS professionals organising in a way that's appropriate to the development of a service that was being sought by their employer., career development is key part of that - why should to workers not organise to have (from their perspective) better services, better training and better careers.

If there is to be any improvement in the way the NHS deals with ME/CFS, there has to be some common understanding about the needs and expectations of staff who will be providing services. There isn't suddenly going to appear a whole new group of super ME/CFS friendly doctors, nurses and therapists and having good relationships between bodies representing staff and ME/CFS patient advocates will be a necessity in bringing about any change that we might want.

 

Yes. The change to Clinical Commissioning Groups across the country increased the already existing 'postcode lottery' in the availability of treatments and funding of many conditions, not just ME. Most of the public still do not understand what has happened in the NHS and why there is such a variation from area to area.

https://www.nhscc.org/ccgs/