[CFS-L] Quotes sought from Irish young people (13-25) with M.E. and/or their parents (for a press release in advance of a free seminar)

[Tom Kindlon]

Subject: Quotes sought from Irish young people (13-25) with M.E.
and/or their parents (for a press release in advance of a free
seminar)

(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.

Tom

--------------

[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.
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
tomki...@oceanfree.net (tomkindlon @ oceanfree.net) or if you prefer,
in...@irishmecfs.org (or info @ irishmecfs.org) (but that's
slower)