Action for ME: Our new years resolutions

Now that 2018 has come to an end here are some of the things that we have achieved over the last year:

continues at https://www.actionforme.org.uk/news/new-years-resolutions/

 

Unfortunately it' s trendy and beloved of graphic designers for the past 4 years. Most government, quango and somevthird sector reports have this presentation .

It can impart figures in a way that makes them easier to grasp . However it always seems like i am back in primary school when i look at this format.

 

I'm not clear on the current status of Action for ME, partly because of memory problems.

Is this group totally in support of ME as biomedical? Did this group previously support GET/CBT for ME?

 

So no new years resolutions from AfME then, not a one.

 

I think you can be forgiven for being a bit unclear about AfME, their status and aims. They spent much of the past giving one impression while actually doing something quite different.

They say they support biomed research for ME, yet continue having very close ties with BACME and others who have strong BPS leanings.

Their advice sheets have had some dubious recommendations too.

 

Thank you @Invisible Woman. My recollection wasn't off base.

Cheers.

Happy New Year to All!

 

Heres a better resolution, shut down.

 

In addition to the other problems people have noted to them, and related, is that I just don't think the people at Action for ME are competent. I'd assume that they're well meaning, but easily manipulated by those who have other priorities than improving life for PwME. Even their priorities that sound good for next year... I'd wish Action for ME were not involved with them.

 

I didn't know Phil was on their board (or maybe I did, and just forgot) - no offense Phil!

 

"More than 2780 people are registered to use our three peer support-forums";

hmm still a sore point for me as I was thrown off for only posting stuff about research, and 'challenging posts' on PACE and Crawleys research (most of which was deleted by the moderator).

wonder if I'm still 'registered' tho(?)

 

You probably still are registered, if their forum software is anything like ours. I also wonder if they are counting the inevitable spammers as well. That figure, of 2780, isn't that impressive, in my opinion. We've only been open 14 months and have over 1500 accounts registered (spammers and all). Yes, you can argue that we are more an international organization than AfME are, but how long have their forums been up and running?

 

yes, that was set up shortly before my 'departure' as a sort of concession. Something I suppose.

 

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

But:
"
The impact of our work so far
In July 2015 we sponsored Webinars for GPs to run a pilot webinar on M.E., led by
Dr Hazel O’Dowd, Clinical Champion for CFS/M.E. Services for Avon, Gloucester,
Wiltshire and Somerset. This attracted more than 150 GPs and had its running time
extended by an hour to accommodate the many questions they asked."

"
We are building on the success of our innovative
employment support pilot, Support, Empower and
Employ people with M.E. (SEE M.E.), to improve
outcomes for people with M.E. and the
professionals working with them."

"
We have sponsored four webinars for 500 GPs and
continue to develop this longer-term programme."

"
We are developing our Online M.E. Centre to share
evidence-based information and the experiences of
people with M.E., and ensure that this effectively
reaches healthcare professionals to improve
outcomes for those they support."

(which evidence-based information?)

"
We will invest in the futures of children and young
people with M.E. by increasing volunteer
opportunities to develop new and existing skills.
• We will train and support children and young
people to be peer-supporters and moderators on
our forums.
• We will provide support for children and young
people to lead and contribute to our children and
young people’s magazine Cheers, our online forums
and other peer support services. "

eta: In theory getting children 'involved' might seem like a good idea; but given both AfME and AYMEs track record, it smacks a bit of indoctrination/enrollment.

 

I think their success of last year was low, their aims for this next year is low also.

Taking in Ayme allows them to puff up the portfolio with some support stuff for children , take that out and what of real substance is there, especially to drive change from the establishment on areas such as service provision and research funding or anything else they’re complaining to WHO about .

It’s all vague to Me in essence, yes we hope our leaflets will reach even more people , we will give a voice to patients on areas we will act, very limited ....(which probably just means working with the PAG for the CMRC).., we will inspire... really?

Being fairer facilitating peer support, offering opportunities for education (but what is being said) and so on aren’t not valuable but it’s not about getting radical change in how ME is perceived, educated, supported professionally and researched

 

Yes. The GP info that requires revision and contacting GPs who have undergone these modules to ensure they are aware of the dodgy info.

 

The other day upon the stair
I met a man who wasn't there.
He wasn't there again today.
Oh how I wish he'd go away.