Action for ME: Our new years resolutions

Hutan said:
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."
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AfME setting itself a new year's resolution to "inspire" is presumptious to say the least. The only things they inspired last year were a sense of bafflement and frustration. I notice that in their "working with" resolutions, other national / international support groups are not mentioned. Their communications officer's engagement on S4ME last year can be described as desultory at best. They seem to do their own thing according to their own agenda without reference to anybody else, and occasionally we are treated to an "announcement" which comes as a bolt from the blue and just about always inspires a feeling of dismay. They claim to collaborate, but it's always with the wrong people and with a view to enhancing their status / ambitions. I wonder, given their status oriented ambitious mindset, whether they view other patient support organisations as competition?
 
Nothing whatsoever about completely reviewing all their web materials to reflect the shift away from behavioural approach they announced in the summer. I can guarantee that in the six months they’ve had literally everything on their site could have been reviewed and either taken down or updated. This is not a six month task given they only have a small site of HTML pages and a few PDFs and videos. In my old job one of my team would have had the whole thing done and dusted within 6 months alongside other projects.
 
TiredSam said:
AfME setting itself a new year's resolution to "inspire" is presumptious to say the least. The only things they inspired last year were a sense of bafflement and frustration. I notice that in their "working with" resolutions, other national / international support groups are not mentioned. Their communications officer's engagement on S4ME last year can be described as desultory at best. They seem to do their own thing according to their own agenda without reference to anybody else, and occasionally we are treated to an "announcement" which comes as a bolt from the blue and just about always inspires a feeling of dismay. They claim to collaborate, but it's always with the wrong people and with a view to enhancing their status / ambitions. I wonder, given their status oriented ambitious mindset, whether they view other patient support organisations as competition?
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Yes collaborating mainly with the establishment
The international advocacy that they seemed to begin might be good but it’s at odds with their uk action
 
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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Amw66 said:
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.
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If this was made by a graphic designer it must be the worst one in the world. This is really badly made from a design perspective, with pixelated images, no sense of proportion, color use, or even a proper information hierarchy. It's hard to read for anyone, and colors like yellow in this context is one of the worst ones for people who are colorblind, just for starters.

It just proves that design is not something "anyone" can just do well, there is a reason people go to school for years to do it well (and sometimes not even then).
 
andypants said:
If this was made by a graphic designer it must be the worst one in the world. This is really badly made from a design perspective, with pixelated images, no sense of proportion, color use, or even a proper information hierarchy. It's hard to read for anyone, and colors like yellow in this context is one of the worst ones for people who are colorblind, just for starters.

It just proves that design is not something "anyone" can just do well, there is a reason people go to school for years to do it well (and sometimes not even then).
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. Yes and stating the obvious this goes for written content too just because anyone can get easily get online with their own website doesn't make what they’ve written easy to read, navigate and accessible.
 
andypants said:
If this was made by a graphic designer it must be the worst one in the world. This is really badly made from a design perspective, with pixelated images, no sense of proportion, color use, or even a proper information hierarchy. It's hard to read for anyone, and colors like yellow in this context is one of the worst ones for people who are colorblind, just for starters.

It just proves that design is not something "anyone" can just do well, there is a reason people go to school for years to do it well (and sometimes not even then).
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Yes, i would agree. Sadly when web design is bundled, everyone can be a graphic designer.
The Afme graphic dosn' t know whether it should be pictures or words and the compromise is not thought through.It may be part of a larger document, and in that context make more sense, but as a standalone it is poor.

Blue and yellow are often chosen as these are the the colour s that are last to go if sight is failing.

Some of the Scottish executives' report graphics are good. Colour and pictorial representation are usually well balanced. Content is sometimes more of an issue ...
 
NelliePledge said:
Nothing whatsoever about completely reviewing all their web materials to reflect the shift away from behavioural approach they announced in the summer. I can guarantee that in the six months they’ve had literally everything on their site could have been reviewed and either taken down or updated. This is not a six month task given they only have a small site of HTML pages and a few PDFs and videos. In my old job one of my team would have had the whole thing done and dusted within 6 months alongside other projects.
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I've just been to their FB page and saw a link to AYME but with the AfME logo.
This takes you to the AYME FB page, which AfME have renamed "ActionforMEKids".

https://www.facebook.com/ActionForMeKids/?ref=py_c

If you read the first posts that come up 'Recommendations and reviews':
https://www.facebook.com/ActionForM...29513&referrer=page_recommendations_home_card

it doesn't exactly fill you with confidence (see below)

they merged with AYME in April 2017 but still keep MJW as head of their childrens services.
Yet although AYME has 'ceased to be' the facebook page still uses AYME, who just share AfME posts.

eta: first AYME review
"
Anyone looking at the FITNET protocol should realise what damage this will do.
Subjecting the control group to heavy GET by any other name to skew the base line.
Seperating the parents and children in the CBT group so they can't realise the harms being done and the fact neither are happy or comfortable with the treatment.
Using participant criteria that are weak enough that it won't get real patients with real ME or even real CFS.
Delaying the final results for 6 years and ignoring that the group of people you are testing on will undergo puberty during this time that will massively change their body and responses to exercise etc.

Using subjective measures to claim recovery rather than actual ability to exercise and focus. As well as guilt trips about their emotions and claiming its negativity rather than real honest responses to the problems that they have.

The only non-subjective thing being measured is attendance at school, the rest is all subjective and useless when you are putting them through psychological manipulation."
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and another:
For an association, which is supposed to be aiding and supporting patients and their families in coping with this horrid illness, to be supporting a trial endorsed by Esther Crawley (whom I believe, apologies if I've been misinformed, to be under investigation by the GMC for negligent management of a young person with ME) which has amongst other things an exclusion criteria including: children not disabled by fatigue(?!) and is taking serious amounts of money away from research, is appalling.

Get your priorities right #AYME, you should be supporting sick children not greedy board members...

To give false hope to those families, who are not up to date with research and scam trials, by endorsing psychological therapies for a neurological illness is in itself a bit sick and I remove my support from your association
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Hutan said:
Well, @phil_in_bristol, now on the board of AfME seems both well-meaning and competent. But he's just one person and he himself said that it's early days. Maybe he or @Action for M.E. have some comments about the aims?
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Hi - and thank you! - yes i joined as trustee in late November. I am intending to join / be influential on (mostly) the Policy group, but it's early days, and I'm up to my ears right now with PAG work as well (that's the PAG to the CMRC) (just as well I'm currently unemployed, lol).

But rest assured, if I see any BPS slant or other stuff I really don't agree with, I will pipe up. That's why I applied..... at the AGM/conference in November, I spoke to many people, and no one was talking CBT or GET, i can assure you!

Esther12 - no offence taken! :)
 
phil_in_bristol said:
Hi - and thank you! - yes i joined as trustee in late November. I am intending to join / be influential on (mostly) the Policy group, but it's early days, and I'm up to my ears right now with PAG work as well (that's the PAG to the CMRC) (just as well I'm currently unemployed, lol).

But rest assured, if I see any BPS slant or other stuff I really don't agree with, I will pipe up. That's why I applied..... at the AGM/conference in November, I spoke to many people, and no one was talking CBT or GET, i can assure you!

Esther12 - no offence taken! :)
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Hi @phil_in_bristol can you get someone to enlighten us on plans for updating the website to move away from BPS slant it is a long time since the announcement in the summer and very little has changed. Meanwhile people are still using the booklets and web content including GP “education” video which is of great concern.
 
NelliePledge said:
Hi @phil_in_bristol can you get someone to enlighten us on plans for updating the website to move away from BPS slant it is a long time since the announcement in the summer and very little has changed. Meanwhile people are still using the booklets and web content including GP “education” video which is of great concern.
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Hi - I see the page https://www.actionforme.org.uk/living-with-me/treatment-and-management/ says "under review" (due to "emerging evidence"), but I agree it should have been updated by now. Can you supply a link to the GP "education" video, is it linked to from the AfME website? thanks. . .
 
phil_in_bristol said:
Hi - I see the page https://www.actionforme.org.uk/living-with-me/treatment-and-management/ says "under review" (due to "emerging evidence"), but I agree it should have been updated by now. Can you supply a link to the GP "education" video, is it linked to from the AfME website? thanks. . .
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I think I was meaning the webinars in this thread https://www.s4me.info/threads/action-for-me-gp-webinars.4993/#post-89636

The pdf documents definitely need an overhaul or taking down notably the one on Pacing which wasn’t written by/with patients but by a CFS clinic.
 
Sly Saint said:
job advert
"
Director of Operations / Deputy Chief Executive
Posted today by Action for M.E.

BS31, Bristol

£50,000 to £60,000

Full-time

About the organisation

M.E. is a serious, neurological condition that affects the lives of at least 250,000 adults and children in the UK – more than MS an... Read more

Posted on: 25 January 2019

Closing date: 24 February 2019"

full details here
https://www.charityjob.co.uk/jobs/a...r-of-operations-deputy-chief-executive/617806
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One of us needs to apply.
I don't know your labour laws in the UK but around here they would have to provide reasonable accommodations, and since they are an ME organization...
 
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