The 12th Invest in ME Research Conference June, 2017, Part 2
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Irish ME/CFS association seeks Irish young people (13-25) with M.E.

Discussion in 'Action Alerts and Advocacy' started by Esther12, Apr 13, 2012.

  1. Esther12

    Esther12 Senior Member

    (Please re-post to where there might be Irish young people with M.E. or parents. Thanks)

    I sent this out to younger members of the Irish ME/CFS Association and their parents on Wednesday night. So far, one parent has said she hopes to write something as well as another parent saying her teenage son hopes to do something: so I thought I'd try my luck elsewhere also.



    [If you don't have time to deal with this, feel free to send it on to your mum/dad/child if you think they might be interested]

    As you may have seen, we are holding a free seminar for young people with ME (13-25) and their parents on May 12, International ME/CFS Awareness Day.

    Venue: Grand Canal Hotel, Grand Canal Street, Dublin 4.

    Time and Date: 2pm Saturday, May 12 (International ME/CFS Day)

    We're currently writing a press release to draw attention to this event and also the illness in general.

    Generally in press releases one tries to have some quotes from people. Unfortunately, although I became ill at 16 and have been severely affected since the age of 22, at 39 I'm way past the right age. So I'm looking for people to help (with quotes), either young people and/or their parents.

    Note, you wouldn't have to use your full name for this if you didn't want to - a first name could do the job. We could even use a pseudonym, although that is slightly less preferable. We currently don't have many young members: I think we have one person who is 17 this month, three more who are already 17 and maybe 15 more under 26.

    So if you could write maybe 3-10 sentences about the illness, that'd be great. For example, why you don't like it in general and/or one/a few things you can't do (or can't do as much as you'd like) and/or annoying symptoms and/or anything else you wish people knew about the illness e.g. just because you look ok, doesn't mean you're not feeling ill or whatever.

    Parents can write something similar and/or how it is hard to see it happen, or perhaps about the effect on yourselves and the family or whatever point(s) you'd like to make.

    Anyway I'm in a bit of a hurry as ideally I would like to get this press release out early next week as I want to give as much time as possible for the media to bite. Also I want to send a press release out for the Dr. Austin Darragh talk on May 26 (which would also mention the other ME Awareness Month meetings around Ireland) but have a gap between the two press releases. So comments before on or before Saturday, April 14 would be great. However, that is probably very ambitious and probably any comments before midday, Monday (April 16) will be fine. Comments after that might still make it.

    I don't expect to be overrun with comments.

    We probably won't send a similar press release for a good while again as the media likes new angles, so even if there are similar meetings, we might not get this opportunity to highlight the problem of youth with ME in the media soon so it would be good to make the most of it. Also, if we get few people to this meetings, that will probably make our mind up not to have a similar meeting for a good while.

    Anyway I'll stop there.

    If you want to ask me about this, feel free to send me an e-mail or leave a message at 01-2350965 and I can ring you back.

    Thanks for your time,

    Tom Kindlon
    Irish ME/CFS Association or if you prefer, (but that's slower)
  2. Dolphin

    Dolphin Senior Member


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