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

I bet you are X

 

Long Covid Groups on Twitter have picked up on this, so I expect they will be contacting them.

 

Sorry to be That Person but it is MELN = ME Local Network

ME Local Network (MELN) is a national network of local support groups of people living with ME/CFS (and carers). We aim to strengthen the relationship between national charities, organisations and local groups, to ensure that the grassroots voice is heard.

“Local ME patients’ groups” here means groups run by and for people with a diagnosis of ME, CFS, ME/CFS and/or fibromyalgia and/or Long Covid or whose symptoms meet the diagnostic criteria of the NICE guideline NG206 on ME/CFS; and whose membership is drawn primarily from a particular geographic area within the UK.

It started in 2021 to bring together local groups as there are as so many people doing amazing work at a local level and we clearly needed to be working together.

There is a separate Local ME message board who are a different and unrelated group.

 

I think it is going to take a lot more than a letter.

I am aware that there are various conversations going on about this, and I am being necessarily vague in that.

The problem is, as I understand it, is that it requires trying to change an idealogy and that BACME completely believe that they are absolutely the experts on ME/ CFS because of their education and having studied it.

Forgetting what Michael J Fox says
"The people living with the disease are the experts"

We are fundamentally on opposite sides of the debate and they have the power and their careers and we have... False illness beliefs, as far as they are concerned

 

It is a Zoom conference so you could register and then listen to the sessions that are most interesting. I couldn’t find any info on whether they will be available after the day to watch but I would imagine they should be.
I imagine they will be assessing each registration but as “clinical professionals” you should be ok

 

It may happen eventually.

If any of the current promising-looking research works out, presumably the normal process begins: replication > drug trials > larger treatment trials > rollout.

At this point it would probably be integrated into mainstream NHS services. If an existing specialism or -ology has experience managing people taking whatever class of drugs is involved, it would be most cost-effective for them to treat pwME too.

At which point, pwME get to rejoin the human race and BACME and their questionnaires become irrelevant.

That's what I'm hoping, anyway.

 

Further info about the conference, including participant bios:

https://bacme.info/wp-content/uploads/2022/08/Programme_final2.pdf


Looks as though wilderness adventures is no longer there...

 

Who are WA or what is wilderness adventures, re all this?

 

Tyson and Gladwell appearing to talk about PROMS…

 

Per the original draft programme for the one day conference, this was an option for one of the workshop sessions during the day:


Workshops repeated (2 sessions)

1 Delivering NSS & DHSC recommendations

2 Dysregulation

3 BACME severely affected guide.

4 Long- Covid CYP & Adults

5 Outcome measures

6 Care & Support Plans

7 Moving NICEly

8 Mindfulness



1. Anna Gregorowski & Christine Oliver

2. Dr Vikki McKeever

3. Ceri Rutter

4. Dr Terry Segal Plus TBC

5. Dr Pete Gladwell-Clinical Specialist Physiotherapist & service lead Bristol M.E. Service.

6. Marina Townend – Specialist ME/CFS Occupational Therapist & Hereford & Worcester service lead

7. Jess Sands & Julia Sands IPSE Adventure therapy

8. Fiona McKechnie- ME/CFS Specialist Occupational Therapist, MSc in Mindfulness approaches




Seems to be promoting walking/hiking as good for health and wellbeing.
Also Jess Sands is apparently aka as Jessica Bavinton of Vitality 360 and part of Committee producing the old NICE GDL.
https://me-pedia.org/wiki/Jessica_Bavinton

After protest letters this session seems to hae been removed from the list of workshops

 

Link to a general participant info leaflet:
https://static1.squarespace.com/sta...86222/1588514370267/Info+for+participants.pdf

Have no idea how this relates to pwME

 

Their "Theory of Change Model"
https://static1.squarespace.com/sta...1592424257950/Theory+of+Change+ipse+model.pdf

 

Ah, thank you @MEMarge!

 

I’ve often thought why is it, that people with ME just don’t go outside more, and do all that communing with nature and forming deep and meaningful relationships with others in adventurous physically demanding situations stuff.

I’don’t know it’s just weird isn’t it, that they either seem to restrict themselves to occasional outdoor pursuits or are just not getting involved at all.

I mean, why wouldn’t you, a sick person, wanna engage in such deeply rewarding and health promoting behaviours as these.

So deeply strange, I can’t get my head around these people sometimes., can you?

 

Ha ha ha ha
That’s made me feel happy I can no longer work
I no longer need to take part in such psychobabble “away-day” offerings

 

Pre-recording of the DecodeME presentation to be delivered at BACME conference on 16 May 2024

 

Thanks for sharing this. If anyone has other pre-recorded sessions please share them. We need to know what is being said in these meetings, to prepare our strategies and stay sane.

 

Is anyone in this discussion attending today's meeting? If so, it would be wonderful if you could download or screen-capture the presentations so the rest of us can see what BACME is sharing.

As a carer for a young person with ME, I am desperately fighting to avoid the deconditioning and other nonsense that passes for "therapy" these days. I had never even heard of BACME until yesterday (I'm ashamed to say) so playing a bit of catch-up here and hoping to get as much information as possible in our struggle.