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Action for ME: Our new years resolutions

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 1, 2019.

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  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    Esther12, Jan 2, 2019
    #21
    Maggie, MEMarge, TiredSam and 5 others like this.
  2. TiredSam

    TiredSam Committee Member

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    Germany
    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?
     
    TiredSam, Jan 3, 2019
    #22
    Maggie, MEMarge, ladycatlover and 6 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    14,837
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    UK West Midlands
    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.
     
    NelliePledge, Jan 3, 2019
    #23
    Maggie, EzzieD, MEMarge and 9 others like this.
  4. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    1,229
    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
     
    Cinders66, Jan 3, 2019
    #24
    MEMarge, TiredSam and ladycatlover like this.
  5. andypants

    andypants Senior Member (Voting Rights)

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    1,334
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    Norway
    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, Jan 3, 2019
    #25
    Maggie, EzzieD, MEMarge and 8 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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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.
     
    NelliePledge, Jan 3, 2019
    #26
    MEMarge, ladycatlover, Invisible Woman and 2 others like this.
  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,769
    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 ...
     
    Amw66, Jan 3, 2019
    #27
    NelliePledge and ladycatlover like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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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
    and another:
     
    Last edited: Jan 4, 2019
    Sly Saint, Jan 4, 2019
    #28
    ladycatlover, JohnM, NelliePledge and 5 others like this.
  9. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    ladycatlover, Jan 5, 2019
    #29
    Invisible Woman likes this.
  10. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

    Messages:
    57
    Location:
    Borders, Scotland
    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_scottish_borders, Jan 9, 2019
    #30
    Maggie, ladycatlover, Graham and 7 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

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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, Jan 9, 2019
    #31
    Maggie, ladycatlover, Sly Saint and 6 others like this.
  12. phil_scottish_borders

    phil_scottish_borders Established Member (Voting Rights)

    Messages:
    57
    Location:
    Borders, Scotland
    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_scottish_borders, Jan 9, 2019
    #32
    ladycatlover, Andy, Hutan and 2 others like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    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.
     
    NelliePledge, Jan 9, 2019
    #33
    Maggie, ladycatlover, MEMarge and 5 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, Jan 25, 2019
    #34
    MEMarge, andypants, TiredSam and 1 other person like this.
  15. Alvin

    Alvin Senior Member (Voting Rights)

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    3,309
    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...
     
    Last edited: Jan 25, 2019
    Alvin, Jan 25, 2019
    #35
    MEMarge, andypants, obeat and 1 other person like this.
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