* Valerie has asked IiME to encourage as many ME
sufferers as possible to send her their personal story plus photo as she
believes it is an important way to use our collective voice and allow others to know that people with ME are not isolated to one area - that it
is global problem. IiME are happy to collate these stories, print them and send them to Valerie* On their website ( click here) Invest in ME wrote:
Valerie Moody is a courageous and determined lady
from Co Donegal.
Valerie has had ME for thirty years - the last nine
years bedbound.
Despite this Valerie believes it is still important
to use what we have got and try to bring about change and, like us, she believes
that if we want to bring about change then we have to do it ourselves.
Valerie has helped IiME in the past and contributed
to the costs of the CAWG meeting last year in London [ 1]. This
made it possible for IiME to even attempt to achieve this in collaboration with
the Alison Hunter Memorial Foundation of Australia.
Valerie is now arranging another ME awareness and
fund raising event entitled
"ALL THINGS BEAUTIFUL"
on 22nd JUNE
2013 at her home Momeen St Johnston, Co Donegal . between 2pm and
5pm.
As she has done previously all funds raised in
Sterling will be given to Invest in ME and in Euros to Tom Kindlon's Irish
ME/CFS Association.
The event is in a number of parts.
The opening is being performed by a government
official. Minister Dinny McGinley TD has agreed to  come and open the event and he
has even rescheduled governmental overseas meetings so that he would be able to
attend. Minister McGinley came to Valerie's home almost two years ago to launch
her book and it is impressive that there now exists a continued representation
especially in government.
There will also be a coffee afternoon and music.
Valerie will also hold an ME Information corner and
intends to put up on a wall all the stories which have been collected so that
other people could read them and, in a more personal way, identify with us are
real people with a real illness.
It will be an opportunity for the community to get
together and enjoy each others' company to see and bring about awareness of
ME.
The idea would be to get as many "important" people
as possible to come and get photos. So Valerie is contacting ME support groups
to see if they could send a representative to be there with him.
It would be a good opportunity to impact and use our
voices together so that people see that there are other people with the illness
and that we are trying to help ourselves - and Minister McGinley is an official
in the Irish Government and "although one man cannot change policy we can plant
the seed for change".
Valerie has asked IiME to encourage as many ME
sufferers as possible to send her their personal story plus photo as she
believes it is an important way to use our collective voice. This would also
allow others to know that people with ME are not isolated to one area - that it
is global problem.
IiME are happy to collate these stories, print them
and send them to Valerie to avoid her doing more work than is necessary as this
would be easier for her and the items would be ready to pin up.
IiME will be sending material to Valerie for display
and distribution - along with any stories we can pass on.
These stories may not get much publicity but Valerie
believes that we can still plant the seed and when ME does come up at
governmental level in the future there will be someone with an awareness of the
effects of ME and will hopefully be on our side. By so doing the general public
will be able to identify with our plight in a more personal way and be able to
see that people with ME are real people with a real illness and had lives before
ME devastated them.
If you would like to contribute to this with your
story then please send in, via email if you wish, your story with a photograph.
We will print these and/or send them to Valerie.
Our email address is - info@investinme.org
Our postal address is -
Invest in ME
PO Box 561
Eastleigh
Hampshire SO50 0GQUK
The venue for the event is at Valerie's home - a
farm. Valerie had 300 to 400 hundred people at her house for tea at the last
book launch that she performed and she is hoping that there will be a good
attendance this time.
She is hiring a marquee for the tea and music this
year.
Valerie explains that even if we educate the people
that come to the venue it is still raising awareness and that perhaps when
people do take ME they will at least be treated with respect and dignity by the
people around them and that they will not always have to defend themselves
against misperceptions and misinformation while waiting for a cure.
Thank you
from Valerie
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