United Kingdom: ME Association news

Discussion in 'News from organisations' started by Peter Trewhitt, Feb 8, 2021.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,506
    https://twitter.com/user/status/1861390187323851032



    Dx Revision Watch @dxrevisionwatch

    @MEAssociation
    Your AGM is scheduled for 9th December. Membership has yet to receive notice. There are only 12 clear days before the 9th. Does the Board of Directors intend to proceed with an unconstitutional meeting and an unconstitutional postal ballot?


    Will the Board of Directors issue a statement on its intentions for this forthcoming AGM?
    12:42 PM · Nov 26, 2024


    Image ALT Text:

    The MEA's governing document, the Articles of Association, stipulates:

    Notice of General Meetings

    "33. An annual general meeting must be called by giving at least 21 clear days’ notice in writing. . .These notices must specify the place, date and time of the meeting and the business to be discussed. Notice of the meeting must be given to all those members entitled to receive it and to the reporting accountants or auditor of the company.

    The membership has yet to receive notice of the AGM.

    The Chartered Governance Institute clarifies:

    https://cavs.org.uk/wp-content/uploads/2021/06/virtual-and-hybrid-agms-a-guide-for-charities.pdf

    "Note that ‘clear days’ means that the day on which the notice is given (or deemed to be given under any notice provisions in the governing instrument) and the day on which the meeting takes place are excluded. Failure to observe the required notice period will render the meeting invalid."

    ----------------------------
     
    Last edited: Nov 26, 2024 at 1:40 PM
    bobbler, Hutan, MEMarge and 6 others like this.
  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,506
    I'm given to understand that the magazine has not been delivered today.
     
    Kitty, bobbler, Hutan and 4 others like this.
  3. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,504
    Location:
    Aotearoa New Zealand
  4. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    1,251
    Kitty, bobbler, Hutan and 1 other person like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    55,656
    Location:
    UK
    https://bsky.app/profile/mayalindemannrn.bsky.social/post/3lbteqexpfs2n
    Post on Bluesky:
    @meassociation.bsky.social
    epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this “The few baying for blood” MEA can’t help but show contempt for the ME community.
    The post includes a screenshot of a reply from the MEA which says:
    Replies on Bluesky are assuming Caroline is the magazine's editor Caroline Cavey.

    So the MEA gets it badly wrong again, insulting people with serious concerns as 'baying for blood'.

    Unbelievable.
     
    EzzieD, Kitty, Missense and 14 others like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    4,048
    Location:
    UK
    I agree, this is awful. This idea of needing 'balance' reminds me of the false balance we had for years of having climate-change deniers up against climate scientists every time that climate change was discussed on the news. The MEA seems to be seeking to balance a BPS view with a biomedical one.
     
    EzzieD, Missense, Kitty and 11 others like this.
  7. Fainbrog

    Fainbrog Senior Member (Voting Rights)

    Messages:
    268
    Location:
    London, UK
    Un-bloody-believable. They are going to try to ride this out, despite over 1000 people adding their names to a very measured letter.
     
    EzzieD, Missense, Kitty and 9 others like this.
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    4,115
    If this reply is by the Magazine’s editor it repeats the Chair’s failure to understand what is going wrong, reinforcing the concern that the issues with the MEA are systemic.

    It hints at a potential contempt for people with ME echoing their failure to address our concerns about Sarah Tyson’s comments here.

    [edited to add final sentence]
     
    Last edited: Nov 26, 2024 at 8:57 PM
    EzzieD, Missense, Kitty and 9 others like this.
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    4,115
    This could reflect a problem of a small number of people in control for a long period, when it becomes ‘THEIR’ organisation and any criticism is seen either as a personal attack or reflecting the critics’ personal failings.

    Undoubtedly the MEA has done a tremendous amount of good and a relatively few people within the organisation have historically done an immense amount hard work. However that alone is not sufficient when to the general public the MEA is seen as the voice the ME community in the UK.
     
    Saz94, EzzieD, Kitty and 11 others like this.
  10. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,506
    Is the MEA not active yet at @meassociation.bsky.social.
    There is an account with 106 Followers but no posts.
     
    Kitty, MrMagoo, bobbler and 2 others like this.
  11. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights)

    Messages:
    891
    Location:
    South West, UK
    WOW.
     
    EzzieD, Kitty, Peter Trewhitt and 7 others like this.
  12. MrMagoo

    MrMagoo Senior Member (Voting Rights)

    Messages:
    1,251
    Yeah
    WOW
    I know I’m just a person, but I’m a person who used to have a corporate job. I just cannot fathom the emotive/personal feelings output with the MEA (and Tyson) organisations and their reps just don’t behave like that in my world! This language about people being “silly, nonsense, baying for blood” it’s wrong, it’s outdated, it’s unhelpful and unprofessional. That it comes from a charity to its so-called target demographic - sick people who have been maligned is crazy! This is the sort of naive reply I expect from the boss of small local business to a bad/unfair trip advisor review.
     
    Saz94, EzzieD, Missense and 13 others like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,951
    Location:
    UK West Midlands
  14. Nightsong

    Nightsong Senior Member (Voting Rights)

    Messages:
    667
    While looking to see if MEA had issued any further response to this I came across this Bluesky post containing an image of another curious Riley article, apparently from their newsletter way back in 1989, that I had never seen before:

    nr1988.jpg
     
  15. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,504
    Location:
    Aotearoa New Zealand
    That's an absolutely extraordinary 1989 letter from Riley.

    For those who haven't read it yet, he was claiming that within days of arriving in the warm sun and new surroundings of Australia his illness of 2.5 years was cured, and was offering his example, his "miracle" as inspiration to others. He talks of a psychological overlay, the mind directing the body to stay ill after the illness has passed. A quarter of a century later, he's still ill and still holding himself up as inspiration to the rest of us.

    "It is a vicious circle that needs beating" he says. Indeed.

    And the last paragraph:
    "But what concerns me most is this. Could there be other M.E. sufferers locked into this vicious circle and who are ready physically to be let out but are without the key that would enable them to escape that circle. The key for me has turned. Has the M.E. Association considered the possibility that it could also be a possible help to others?"

    There's a joke in there somewhere, something about the MEA showing Riley the door.

    The letter seems to have been written in response to an article in the MEA newsletter by Chalder and Butler titled 'Facing the issues'.
     
    Last edited: Nov 27, 2024 at 7:25 AM
  16. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,821
    is he suggesting everyone gets a trip to Australia at 2.5yrs?

    The ‘5 weeks since I’ve arrived’ makes it sound like he’s preaching from the other side of the world in the sunshine to everyone in the Uk he left behind ‘fir his health’ and the main lesson seems to something different to actually doing as he did?
     
    Last edited: Nov 27, 2024 at 7:36 AM
    EzzieD, Kitty, Sean and 2 others like this.
  17. obeat

    obeat Senior Member (Voting Rights)

    Messages:
    704
    MEA cannot promote both NICE guidelines and anecdotal evidence.
     
    EzzieD, Amw66, Kitty and 6 others like this.
  18. dratalanta

    dratalanta Established Member (Voting Rights)

    Messages:
    90
    “The MEA cannot listen only to the few who are baying for blood, or only to the many who welcomed Neil's editorial.”

    If true, that is very surprising. Why would “many” people with ME use their scarce energy to contact the MEA to welcome an editorial repeating advice we have all heard a million times from doctors, family, friends, total strangers and medical know it alls of all stripes? “Many” people don’t write in to Sainsbury’s to thank them for selling milk. What would be the point?

    And why are these people contacting the MEA but not commenting on social media? If there are so many of them, surely they would have no fear of pile ons? If they’re not on social media, how do they know the MEA is under pressure and that they need to express support?

    Unless of course these “many” people are mostly not people with ME at all, but people professionally associated with the fear of movement belief i.e. MEA’s friends at BACME. They have every reason to welcome an editorial which might help to prop up their broken business model a little longer, and every reason to do it privately rather than publicly.
     
    Saz94, EzzieD, Nightsong and 12 others like this.
  19. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,504
    Location:
    Aotearoa New Zealand
    https://valerieeliotsmith.com/2022/...iny-identities-revealed-in-charity-complaint/
    Worth reading Valerie's blog post about some emails from Riley. After chastising her for the 'strident' tone of her earlier blog post, Riley provides her with advice which also seems to include warm sun:
    There's a lot of irony there.
    (Edited to add: read the whole blog post - Riley's criticism seems misplaced and takes a phrase out of context.)
     
    Last edited: Nov 27, 2024 at 8:50 AM
    wigglethemouse, EzzieD, Kitty and 6 others like this.
  20. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,821
    Aren’t four of those categories basically different ways of flagging the same issue: that Neil’s article was not on?

    and i think they can assume that includes his non apology

    so then there are apparently some who have sent praise of something (Neil and his article? Or eg Charles shrpherd?)

    anyway they’ve a petition of 1000 so have they clocked (or got the petition in order to clock) is those emails are saying the same thing as tgsf petition as a whole message?
     
    Kitty, Fainbrog, Trish and 3 others like this.

Share This Page