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New advocacy group starting: The ME Action Network

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, May 30, 2014.

  1. Countrygirl

    Countrygirl Senior Member

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    Sasha likes this.
  2. Sasha

    Sasha Fine, thank you

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    New one on me... looking forward to hearing more.
     
  3. Aileen

    Aileen Senior Member

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    Very poor choice of name. Here in Canada, our main patient organization, in existance for over 20 years, is called the National ME/FM Action Network. Since this new organization's name is so similar, it makes me wonder how knowledgable the people behind it are. We really don't need this kind of confusion.

    The CFIDS Association of America's name change isn't helping. With all the new ones coming on board, I don't know who anyone is anymore. Just what a bunch of people with cognitive dysfunction need.

    With all the new players in the last couple of years another new one is the last thing we need. I think we are getting too many groups with overlapping and/or competing goals. Not good. It will be a nightmare for fundraising. That is already hard enough now.
     
  4. taniaaust1

    taniaaust1

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    Ive never heard of them but are interested to find out more about them too.
    .....

    I dont see an issue in the name with the group in canada which lots of people arent aware of. The FM in the name to me really distinguishes the two apart.

    But there isnt a lot of international groups and how about big well known international ones? That still needs to occur. Ask the general public of an international ME group and they wouldnt be able to give you one. In fact most of us wouldnt be able to give one.. right now if something asked me that, I couldnt think of an answer.

    Maybe a group will form which will be more successful then those previously (at that point international groups can always end up becoming merged at a later date with the not as successful being incorpated into the successful). Two groups trying to fund raise etc or whatever for us surely are better then one.

    I personally dont like FM groups, ME can be drowned out in groups as there can be so many more in these groups with FM which is more common. (Ive had personal experience of ME/CFS group being drowned out by everyone having FM when I was at a meeting, I really felt out of place as I think there was only me and one other with ME). Im very happy when just ME gets focused on rather then any one of its symptoms dominating which FM in a name leads too.

    You think the names are too alike. I think they are quite different with one I actually wouldnt support due to its name and one I would. There isnt many groups out there at all with just ME in their name (leaving out CFS and FM) and there is a group of us who give more backing to ME groups with the focus on ME which is an illness in which no one symptom dominates.
     
    Last edited: May 31, 2014
    golden, Countrygirl and Blue like this.
  5. taniaaust1

    taniaaust1

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    Does that first link work for people? I cant get the page up and I dont do FB.
     
  6. Countrygirl

    Countrygirl Senior Member

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    Morning Tania, :) (well, it is here and the sun is shining............a miraculous event in the UK so far this summer),

    Both the links take you to a FB page, one so you can sign up and the other to read their new page. I don't know of any other links yet. Hope you ,manage to found one so you can join too.

    Power in numbers.......especially if it's global.

    C.G..
     
  7. Firestormm

    Firestormm Guest

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    taniaaust1, Sasha, Blue and 1 other person like this.
  8. Tuha

    Tuha Senior Member

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    I am also not happy that there are more an more groups/organisations.
    But I really like the concept even if I dont know too much what this group would like to do and how it will work.
    What I like is that you have to subscribe with you email adress - so on the end there will be a mailing list with potentially many email adresses. I think the email communication is the only way how to reach very quickly many patients. Many patients are members of many groups but they dont go there regulary. But almost everyone check his email almost every day.
    try to call for an action now and you will spend days just by spreading the word and you will not get many patients.
    Btw. I dont see there any international advocacy ME organisation/group which would have many members and could achieve anything by pushing with its numbers.
     
  9. manna

    manna Senior Member

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    no indication of what they're about, goals or anything..edit: oh i see something now, thanks
     
  10. Sasha

    Sasha Fine, thank you

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    If Jen Brea's in it, that's good enough for me! She's very innovative and connected, and she's got the sort of public profile in the ME world that can get other PWME on board. And she's only one of the network!

    Looking forward to seeing this get underway.
     
    Blue likes this.
  11. Sasha

    Sasha Fine, thank you

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    There's a clever thing the site does when you put your email address in - it gives you the opportunity to put in someone else's email that you want to know about the site and provides buttons so you can 'like' it on FB etc. - very good.
     
  12. taniaaust1

    taniaaust1

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    thanks, I thought I recognised her name but I still cant figure out where from seeing I only tend to nowdays hang around PR.
    ..............................

    Tuha. Unfortunately many of us dont as its just too much. I only check mine about once every 3 weeks and the only place I keep up with some is here. If I was worrying about emails, I just wouldnt be here nowhere near as much as something would have to give.

    Its very hard to unite the ME world due to things like that.
     
  13. taniaaust1

    taniaaust1

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    Countrygirl. So you have sun, while I in Australia today have had rain :)
    .....

    Well I can say that is something I certainly need. Im trying my hardest to advocate for myself and just dont seem to be effective at all, due to this, I just dont get the support I need. (example of this is my thread in the treatment section). I could do with tips and other help to be able to do this better!!. Sounds like if this group takes off it could be a great help to all the other groups out there.
     
    Last edited: May 31, 2014
    Countrygirl, golden and Sasha like this.
  14. Sasha

    Sasha Fine, thank you

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    She's the director of the Canary in a Coalmine documentary and she's also set up the 'Thrive Show', an online video programme with interviews - she did a great one lately with a key guy from the AIDS 'ACT UP' movement, and on May 12 had a panel show with Dr Leonard Jason and others (there goes my memory) on what PWME should be doing for advocacy.

    http://www.canaryinacoalminefilm.com/#!filmmakers/c1ijq
     
    taniaaust1 likes this.
  15. Tuha

    Tuha Senior Member

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    I know that for many patients it´s exhausting to check their email. Still I think it´s the most effective way how to unite the patients. I was thinking about creating such a mailing list already for a long time and when I was talking to many patients - most of them check their emails daily. With this illness we will never find the best solution for everyone. I am very keen to see what Jen will create with this project
     
    Sasha likes this.
  16. Min

    Min Senior Member

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    Thanks.

    Has this group any connection to ME Action UK does anyone know please, or does it just have a similar name?
     
  17. Firestormm

    Firestormm Guest

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  18. Aileen

    Aileen Senior Member

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    Just a group in lowly, worthless Canada so who cares, right? Those Canadians, good to lean on when you want help, but otherwise irrelevant. We got it. This attitude keeps popping up from different people on different threads. It's getting old.

    The National ME/FM Action Network is the organization that gave you the Canadian Consensus Criteria, Tania.

    And it sponsored the International conference at which the XMRV scandal blew open. And got ME officially recognized by the government in Canada. And tries to educate the Canadian politicians and public about the illness.

    And it has an excellent website where you can read and download all kinds of information. This includes educational materials for teachers and parents of children with ME.

    So sorry you didn't even bother to google the name. Nice to know all the work we've done to benefit everyone including YOU means nothing because FM is in the name. Many patients have both ME and FM. That does not make them less deserving of membership.

    Also interesting to note that someone would turn up their nose at a long standing organization and declare they are not worth supporting, yet tell us you would support a new group that is currently nothing but a name. It could be a group of bird watchers for all we know!

    :devil::devil::devil::devil::devil::devil:
     
    Last edited: May 31, 2014
    Valentijn likes this.
  19. SOC

    SOC Senior Member

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    Plenty of us appreciate Canadians, the National ME/FM Action Network, and all the hard work they've done for the benefit of PWME. :hug:
     
  20. Esther12

    Esther12 Senior Member

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    From my reading of her post, I really didn't get that Tania was being dismissive of the Canadian group or what they'd achieved.
     
    Ritto, Valentijn and golden like this.

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