Awareness Month - May 2007
This is the second ME
Awareness Month which Invest in ME has participated in
as a charity and, if the spirit of the International
ME/CFS Conference which was just held in London, is
anything to go by then we should have an eventful month
With the first of the
month's ME/CFS conferences already behind us we look
forward to the other events in May which will raise
A reminder that our flyer for ME
Awareness Month is available from the
ME Awareness Month page
- the theme -
Energising ME Awareness.
We have again asked
Google to honour people with ME by making a
see here. Let's see if the biggest search engine
around can find it in its collective heart to spare some
time for those who seem not to be visible to many people
deciding research funding and healthcare policies.
everyone organising or participating in any awareness
event the best of luck.
All at IiME
Dr. Ian Gibson's
Inquiry group is scheduled to meet to discuss revisions
to parts of his report. This was announced at the
International ME/CFS Conference in London.
Norway - the
The applause which
was given to the Norwegian ME Association at the
International ME/CFS Conference in London is hopefully a
sign of the significance and recognition of the news
from Norway on the initiatives being taken there (see
here). IiME are attempting to get Minister Sylvia
Brustad and Dr. Ian Gibson to meet and re-inforce all of
the positive recommendations from both initiatives.
Visit to MRC
be meeting up with the MRC soon to discuss issues
relating to ME and biomedical research. This follows on
from contacts made prior to the International ME/CFS
The research proposal to provide two UK centres for full
body analysis of people with ME, with Dr. Byron Hyde and
Professor Malcolm Hooper, is continuing. We shall
provide more details when we can although this is
obviously not a project which will be completed without
a good deal of preparatory work.
Raising ME Awareness in Spain
Clara Valverde has provided us with additional
information from Spain, in the form of a powerpoint
display. We show it
Clara reports from Catalonia where,
until a few years ago, the illness wasn't even
recognised. The problems encountered by Clara are
similar to those in other countries and it, again, is
only because of ME patients that any publicity is
generated for the illness.
An illuminating slideshow from a
dedicated and determined group of campaigners.
Hopefully many will have noticed the first Journal
of IiME on the web site. Our hope is to supplement
the newsletter with this publication as often as we
can - but at least four times a year.
The publication will be free from our web site. We
also hope to raise funds to print it and distribute
it to healthcare staff.
Our thanks go to our
contributors who helped augment the conference pack
for delegates at the International ME/CFS
Conference. New to the version of the Journal on our
web site is the article from Professor Colin
Blakemore of the MRC which came too late to be
included in the conference version.
The Journal is currently
and the Quotable Quotes Booklet
still available - the
QUOTABLE QUOTES ABOUT ME/CFS booklet.
Compiled by Margaret Williams it costs £3.50 plus
postage and packaging and is available
here. This is a limited run so please order now.
An ideal present for anyone needing
to perform research, compose letters or verify
International ME/CFS Conference Review
International ME/CFS conference is over. The
2nd International ME/CFS Conference 2007 was
completed at the beginning of the month.
Delegates and presenters from USA, Canada,
Europe and South Korea attended and created
a special atmosphere which is a credit to
people with ME, their carers/parents and
those researching/treating the illness.
conference review pages are now available
with a gallery already present from Regina
Clos, from Germany -
that good and useful connections have been
made - researchers discussing collaboration;
ME Support groups discussing joint ventures
and campaigns; carers and parents sharing
experiences. The conference, held over two
days, was another special event.
Thank you to those ME
Support groups who facilitated the
attendance of local GPS and healthcare
support staff at the conference. We hope
these links will continue at a local level
and would be keen to hear from anyone of any
results experienced from the conference.
Invest in ME are producing a DVD of the
International ME/CFS Conference and we hope to
make it available in early June 2007. The DVD
should have all of the presentations from both
days of the conference.
We also have a surprise in store with special
interviews with several of the presenters.
The interviews were conducted by Professor
Malcolm Hooper who, besides a full day of
discussions and presentations, also managed to
use his vast knowledge of the subject area to
quizz selected speakers.
We'll leave the rest as a surprise for now.
Register your intent to purchase the Conference
Use the conference
review links below to visit review pages.
from the Conference
Thanks to Susan for reminding us of Professor Malcolm Hooper's riposte to those
who believe ME is all in the mind - "Offer
them a blood transfusion". It
was, indeed, brilliant.
Thanks to Rebecca who gave us this encounter
from the conference -
any doctor look at the facts and
doubt it is a physical disease. And
yet...there was a least one doctor
there who still was a Wessley-schooler.
On the second day, I sat next to
this man and when I told him I had
ME/CFS he told me to try deep
breathing techniques and asked me
if I was a person who had a lot of
self-doubt...... so...you can lead a
fool to facts, but you can't make
which takes us in nicely to the next
and finally a Horse Story
Something, perhaps, not directly related to ME but
perhaps interesting for those interested in associations
between chronic illnesses - although this article refers
to horses. Bill O'Gorman has provided this article
concerning Lyme Disease and the performance of race