Since the December
Newsletter was published there have been a few developments for IiME. Our
community has expanded due to more awareness of our existence. Special thanks to
those who have introduced us to so many more people from around the world.
ME Awareness is the
theme of this month's newsletter. The year of 2006 could be the most defining
yet for the ME community. The Gibson Inquiry will be reporting this year. Our
aims of education about, publicising of and lobbying for awareness of Myalgic
Encephalomyelitis are encapsulated in the ME Conference 2006 in London on ME
Awareness Day.
The conference has
attracted wide interest and we hope we are able to see Pwme at the event,
although it is appreciated that this will be difficult for many. See news later on regarding
this event.
For 2006 to be a pivotal year for ME means that,
unfortunately, the ME community has to convince people to listen. This
means constantly using every means possible to attract attention and
raise awareness. The
ME and My MP campaign is still going and MPs should
be one of our first targets for support. We have also added a page on the Tayler family's experience to raise more funding for
biomedical research.
One of IiME's objectives is for adoption of the
Canadian guidelines for clinical diagnosis of ME. Recent additions to the
documentation has resulted in a more condensed overview of these criteria which
will make it easier for healthcare staff to use. The new link is added to
our Info Centre Guidelines
page. The overview of the Canadian Consensus Documents has been co-written
by Dr. Bruce Carruthers. Dr. Carruthers will be at our London ME conference in
May.
The
Invest in ME
site has been viewed from an increasing number of countries (indicated by the flags below). Although it is
wonderful to be connected with so many contacts from other countries the flip side to this is a
more sombre realisation that ME knows no boundaries and is affecting people
around the world. We hope we may link up with
other international and regional organisations. The more we co-operate and join
forces the more focused our efforts can become.
In the December Newsletter we mentioned our
regional contacts - Flora McKenzie, Debbie Hughes and Audrey Irving. We
would also like to add this month Carol Ashcroft who is covering the
north of England and Anne Gosling who is in Dundee. We feature our
regional contacts on the
web site.
In the meantime, if you would like to help us as a regional
contact please write to us via
this link.
A new year and a new logo. In line with
our belief that funding for biomedical research is the only way to find a cure
for ME
we have wrapped a double-helix around our organisation's name to produce
our logo. The
double-helix logo will now appear more frequently on all of our publications
and on our web site.
The Invest in ME conference in London on
12th May has attracted a great deal of interest - not only from within
the UK but also from several other countries. We have delegates
attending from several countries in Europe and have had interest also
from USA and Canada. One of our main objectives is to attract as
many
healthcare professionals as possible and we are
pleased to announce that the conference has been awarded the maximum Continuous
Professional Development (CPD) points by the Royal College of Paediatricians
and Child Health and we'll shortly have that confirmed by other Royal Colleges. This allows healthcare staff to attend and
claim the course as part of their career development. Educational and social
services staff may also gain from this.
So, for those in the UK, please urge your GP, or paediatrician or local ME Centre staff to fill in an
application form and attend and listen to the latest on clinical diagnoses,
research trends and educational considerations from the people best
placed to know.
The venue is One Birdcage Walk, Westminster, London, and a registration form
(online or downloadable) is available
here along
with more details on the conference and presenters. A downloadable pack of
documents will be available soon.
We are also pleased that Dr. Betty Dowsett is to attend the conference, as an honorary guest.
Our events database is available for all groups and organisations and individuals who are interested in fund-raising for biomedical research into ME. The Events calendar has been updated for 2006
and it is there for everyone to use. If you know of events planned to
support education on ME or fund-raising for biomedical research then please
contact us with any news or information. Look in the Events page - see
here.
In last month's
newsletter we were waiting for ITV to give permission to publish a series
of programmes covering the effects of ME on severely affected patients. Invest
in ME has now been given that permission. The programmes contain interviews with ME sufferers
in Hampshire as well as an official from the regional ME centre.
Shocking, tragic and
necessary viewing for your MP, GP, paediatrician or anyone interested in ME and
the effect it can have on us all. View it here.Also included in these programmes is an
interview with Dr. Jonathan Kerr.
Suzy Tayler's story is highlighted in the Meridian interviews. Her
family embarked on an extended fund-raising drive last year culminating in over £8000 being
raised for biomedical research.
With ME Awareness Month
just a few months away just another reminder that we would like to compile a listing of stories relating to
ME. How you were diagnosed, the treatment and experiences you have had, the
perception of others etc. We have two categories - persons with ME (pwme) and
carers/parents of pwme.
If you would like to share your experiences then please
contact us
and let us know about you.
The gallery of stories for
pwme is
here. The gallery of pwme parents/carers is
here.
Watch this space over the coming months for guest
speakers.
Dr. Vance Spence and Dr. Betty
Dowsett will be contributing articles to the Invest in ME site. We also have one
or two interesting items coming up in the future. Our Guest Speaker page is
located here.
Submissions have been entered for the deadline
set by Dr. Ian Gibson's Inquiry into ME. We had contacted Dr. Bruce Carruthers
in December to ask if he had submitted anything for the Inquiry. Dr. Carruthers
managed to submit information in time for the deadline - a valuable act for the
ME community. Now we await news on the nominees for the committee examining the
evidence submitted and interviewing interested parties. See
here for news on the inquiry.
Links to recent articles by Professor Malcolm Hooper have been added to the site.
More and more articles are appearing which link many illnesses, among them ME,
with vaccines. We hope to be publishing more on these topics in the coming weeks
as it is something which more researchers are discussing.
We have an article on the HHV6
virus which is also being linked to cases of ME. A recent discussion on a notice
board was picked up and looked interesting so we created an overview. We later
discovered a more in-depth article by Cort Johnson so we have also included a
link to Cort's site.
Read more here.
Alice Burchfield contacted us recently regarding the FINE trials. If you ever
worried that sorely-needed government funding for biomedical research might be
being wasted or that the Medical Research Council might be looking the wrong way then don't stop worrying. Read Alice's
story
here.
At the time of writing the status of the EDM
260/260A in parliament stood at 210/19. We have further contacts from MPs - some
good, some less than good.
Anne Widdecombe had previously responded to
our letter by signing EDM 260A. Norman Lamb (MP for Norwich)'s office has
offered the possibility of tabling questions in parliament relating to ME. Although we are bound to be met by the same off-the-shelf answers normally provided
by the government minister concerned it is still worthwhile keeping this
pressure on. The ME and My MP campaign was started to attempt to make it
easier
to coordinate efforts to make MPs more aware of the issues with Myalgic
Encephalomyelitis. We aim to write to five MPs per week asking for their
support. Keep a regular eye on our
campaign page and consider writing to your MP - we have a template letter on there to help you.
We'll add your experiences to the responses gallery.
One thing MPs will learn is that we're not going
away until ME is dealt with seriously in the UK. Eventually we will be in contact with every single MP.
We have to work together to be able to win this
fight for publicly funded biomedical research into ME. So IiME is going to
highlight what other groups are doing in the UK and how we can we work together.
The first in our series puts the focus on the ME
Support Norfolk group. Go to our groups page
here to see details of MES-N. This page
will contain other groups over the next few months.
We have the same wish to be in contact, and hear
about other groups around the world. So we shall be storing information and
links to the other groups campaigning for the same issues as us.
On our links page (click here) we have links to some
areas which might be of use. One of these is LocalME,
run by Connie Nelson. This is an interesting and friendly board where you can gain a lot of
information, help and awareness of what is going on. Connie invites everyone to
join the ME community here. You can sign up using
this link.
To subscribe just give your name and local group details in the email.
LocalME is meant for local support groups and
everyone is welcome.
We had contacted Dr. Bruce Carruthers
in December to ask if he had submitted anything for the Inquiry. Dr. Carruthers
managed to submit information in time for the deadline - a valuable act for the
ME community. Now we await news on the nominees for the committee examining the
evidence submitted and interviewing interested parties. See
link to the home page. Read more on
