Action for ME: Our new years resolutions

Andy

Andy

Retired committee member
Now that 2018 has come to an end here are some of the things that we have achieved over the last year:
New_Years_-_2.png

continues at https://www.actionforme.org.uk/news/new-years-resolutions/
 
Trish said:
Is it just me being grumpy when I say I hate information laid out in that style with pointless boxes and pictures and colours scattered over the page?
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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.
 
DokaGirl said:
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?
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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.
 
Wonko said:
So no new years resolutions from AfME then, not a one.
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It is odd that an article on New Years Resolutions spends 50% of its length telling us about what they did last year. But, if you click through, there are some resolutions:

"However, there is so much more that we want to do. Here are our new year’s resolutions:

Improve
  • increase practical support for people with M.E. by linking them with local volunteers
  • offer more children and young people with M.E. the opportunity to connect with others affected by the illness through online platforms and face to face meetings
  • develop targeted resources, informed by people with M.E., to ensure that they and their families have the information and support they need.
Inspire
  • work collaboratively with education, health and social care professionals to ensure they have access to training, resources and high-quality information about M.E. and its impact
  • work with M.E. support groups to enhance influence and increase understanding at a local level.
Invest
  • working with people affected by M.E. to ensure their voices, views and experience play a lead role in driving research forward
  • investing in the futures of children and young people with M.E. by increasing volunteer opportunities to develop new and existing skills."

There are some good things there, but my impression is that it's very much aligned with a 'helping PwME help themselves at least cost to the government' philosophy.

For example, under 'Improve', it's not about ensuring PwME get access to government funded practical support, but instead about putting them in touch with volunteers. So rather, than focusing on rights to care, it places the onus on PwME to be the type of people who deserve the optional care of altruistic volunteers.

And that last aim under 'Invest' - I'm not clear if children and young people with ME are going to be given chances to volunteer in order to develop skills or if healthy people are going to be given chances to volunteer to up-skill children and young people with ME. Either way, it's not about getting government to fund anything and it seems a bit odd that 50% of the 'Invest' aims are about up-skilling exhausted kids.

In fact, under 'Invest', there's nothing there about lobbying the government to dedicate more resources to research. They suggest they will help ensure our voices are heard, but it sounds a lot like it's up to us sick people to get on and drive research forward.

Also, has no one told them that aims without something quantifiable are as worthless as, well, something quite useless? With nothing concrete, it all becomes an exercise in nice words and sentiments, with no accountability.
 
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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.
 
"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(?)
 
Numbers registered with forums are very misleading. This forum has about 1500 registered, the majority of whom never post on the forum. I think we have about 2 or 3 hundred fairly active members. And the longer a forum goes on, the more non participants will accumulate on their lists.

I joined the AfME adults forum a year or two ago. It seemed to consist of a very small core group having virtual coffee mornings together, a few sharing their experiences of trying herbs and supplements, and a single thread where people could post, but did not discuss, research news. They were welcoming when I introduced myself, but I found no threads of interest to me, so I gave up.
 
Sly Saint said:
"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(?)
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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?
 
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.
 
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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
 
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Sly Saint said:
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. "
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Yes. The GP info that requires revision and contacting GPs who have undergone these modules to ensure they are aware of the dodgy info.
 
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