Let's Do It For ME Statement
The Let's do it
for ME campaign was launched by a small group of people with severe ME in
July 2011 in support of the proposal by innovative and forward-thinking
UK-based charity Invest in ME to establish a centre of excellence for ME
based in East Anglia and the first of its kind in UK/Europe, combining
translational biomedical research with patient care and education and
training for medical professionals, in collaboration with international
researchers and like-minded ME organisations across the world.
We are keen to
help progress research and treatment, not only to benefit ourselves as
patients, but also to avoid losing another generation to the ravages of this
disease. We have no more time to lose.
We wished to
assist in a practical way by raising the £100k needed to fund the foundation
project to get the research strategy underway in Norwich.
delighted to receive supportive comments for our Guest book or by other
means, from some of our MPs, the Countess of Mar and Jane Colby, Executive
Director of The Young ME Sufferers Trust. At the 8th annual Invest in ME
international conference in May, Dr. Ian Gibson announced that we had
reached our initial fund-raising target, which means that we had raised
£100k in under two years.
This is no mean
feat, starting from scratch from our homes and beds, with no campaign budget
We could not
have achieved this without the tremendous efforts of a wide range of
supporters, from very severely ill survivors to wonderful willing wellies.
We are genuinely
delighted and appreciative of any types and all levels of support, and there
have been too many ingenious, innovative, creative, generous, courageous and
inspiring ideas, events and contributions to mention them all individually
here, some are featured in our blogs and main websites and please do let us
know if you'd like yours added.
hail from all corners of the UK, Europe, Canada, USA, Australia, NZ, and
over 3500 votes in April won Invest in ME 1st prize of £2000 in The Big
Break contest run by Direct Debit.
involved is a volunteer and every penny raised goes to the Biomedical ME
prizes or similar resources are donated.
Members of the
planning group run the campaign websites and on-line shops, organise ME
Awareness events such as The Big Sleep for ME, designed to be accessible to
people of all ages and levels of illness severity and launched in 2012,
ongoing fundraisers such as the 1st of each month One Day-One Pound and
Small Change to Change M.E, the Christmas card competition, calendars,
summer quizzes, card sales, stalls, supermarket and church collections.
proactively help to organise or support other patient initiatives that
include Invest in ME, such The Big Shave 2013 and Walk for ME.
This is all done
painstakingly between us over the course of days, weeks, months as and when
illness allows and we are ever grateful for all help and support.
Jacqueline Rayner is a founder member of our planning group. She had been
planning with her friends and colleagues at Big Finish Productions to
produce a charity audio play for download in aid of Invest in ME, based on
the character of Bernice Summerfield: Many Happy Returns.
Not content with
that, producer Scott ran the Edinburgh Marathon for Invest in ME, writer
Simon donated funds from his choir, and others working on the project have
done more besides.
You can see some
of these lovely people in our Bear Meets gallery on the main Let's do it for
At the same
time, planning group member and writer Barnaby Eaton-Jones reworked his
play, Running To Stand Still, in aid of our cause and again, everyone
involved gave generously of their time and talent.
Mama Chill decided to proactively support Invest in ME in her awareness
raising and by donating proceeds of downloads and joining the team. Her ME
Awareness track is based on the original “I Can't Stand The Rain”, and her
new track, “Don't Say Nuthin If It Ain't Worthwhile” was released for May
Awareness. There are various other artists, writers, musicians,
photographers, supporting the charity.
Make ME Crafts
exploded onto the scene last year and is proving hugely popular, with an
ever-expanding team producing an impressive range of arts and crafts
available all year round.
Katie summed it
up with this comment:
“Big thank you
to Jon because you have brought the community
really positive, everyone is happy making and doing things they enjoy and
its all going to hopefully find what is going on with our bodies !! Sooo
happy to be a part of this XD xx”
of our planning group featured alongside an advert placed by IIME to raise
awareness of the foundation research project.
previously crocheted soft wool blue awareness wristbands for IIME and her
grandparents hosted a coffee morning in aid of our cause.
decline in her health, Rosa was moved to a nursing home, and fed by
She chose to
mark her 21st birthday by raising awareness and funds for our cause. The
staff at the nursing home joined in with a pyjama day with all proceeds to
Rosa's appeal. Goodwill messages were posted across the social networking
sites and some people used Rosa's photo as their profile picture for the
day. Her mother said that the appeal passed all their expectations. Having
contracted ME at 8 years of age, Rosa's story epitomises the indomitable
spirit of the majority of people of all ages with ME, as well as the spirit
of our campaign.
Empowerment is a
key element driving the campaign and it has been very rewarding to see
children and young people in particular, as well as the very severely
affected, able to play a role in speaking out about their disabling illness
and how it is viewed and treated by society and the medical profession,
whilst taking such positive steps to raise funds for the translational
biomedical research required to bring realistic hope for their recovery,
with support of well friends and family members.
“Although it has
been a year since I was in hospital due to M.E. I am still struggling with
this awful misunderstood illness. I am still not in school and I want my
life back as I knew it. I know many other children who are suffering with
this illness too and I am in touch with them. They are also missing out on
so many things like me. This is such a great cause, raising money to find a
We have clearly
all been very busy over the past two years, so what's next?
The £100k raised
has enabled the translational biomedical research strategy to get underway
at the University of East Anglia by fully funding the foundation project on
gut microbiota in ME patients.
ME is classified
by the World Health Organisation as a neurological disease, but a body of
research points to it as primarily a disease of the immune system with
downstream effects on other systems and organs in the body and this is
consistent with "encephalomyelitis" as that means inflammation of the brain
and spinal cord and inflammation is an immune system response.
This could also
help to account for the often fluctuating nature and variable severity of
symptoms, as inflammation tends to flare and subside.
caused by a virus that multiplies in the intestine and ME has been described
as atypical or non-paralytic polio. When Jane Colby contracted ME she was
referred to microbiologist, the late Dr. Betty Dowsett, and was found to
have a virus similar to the polio virus. The majority of the immune system
is in the gut and so it makes sense for a strategy aimed at finding reliable
biomarkers for early and accurate diagnosis and effective treatment options
to begin by looking at the gut and gut microbiota and this is an approach
being taken by researchers in other countries to ME and to other diseases
that affect the immune system.
A week after the
hugely successful and productive 2013 conference, Invest in ME announced
plans for a UK clinical treatment trial of Rituximab, an immune modulating
monoclonal antibody used in treatment for autoimmune diseases and
non-Hodgkin's lymphoma and found to result in major or overall improvement
in all ME symptoms in 67% of patients in research in Norway.
points to ME as an autoimmune disease and even better results have been
achieved in follow up studies by increasing doses to create a more prolonged
other countries now need to replicate and validate this important research,
which has huge potential to increase understanding of the disease, by
studying those who respond well to the drug as well as the nonresponders.
about 70% of patients with rheumatoid arthritis.
We are delighted
that Professor Jonathan Edwards is a acting in an official capacity as
Advisor to Invest in ME on all aspects of the trial as there is no-one
better placed to do this, and we are now helping Invest in ME to raise the
funds required for the dedicated Rituximab Research Fund, which stands at
£15,000 at the time of writing.
Invest in ME has
other biomedical research and related projects in the pipeline to be
supported from the main Biomedical Research Fund and we will keep you posted
when we have news of these to share.
The charity does
a lot more besides organise and fund biomedical research and if you wish to
support the other aspects of the charity's work - their campaigning,
advocacy, education and awareness materials and the excellent conference
events, there is a general fund you can donate to.
donation options are on the Invest in ME and Let's do it for ME websites.
wonderful trustees perform their work for free, ceaselessly all year round,
sometimes around the clock and often under challenging circumstances, as ME
sufferers or parents/carers themselves, working hard to make progress in ME
research and treatment and to bring wider understanding of ME in UK into the
21st century. What they have achieved since they formed as a group in 2005
and as a registered charity since 2006 is nothing short of miraculous. They
have done much to galvanise biomedical research into ME and we are proud
to support their efforts.
We are immensely
grateful to Invest in ME and to all those who support them in their
international drive to instigate, fund, and conduct the kind of high quality
scientific biomedical research that may be translated into reliable
diagnostic biomarkers and long-awaited effective treatment options for this
organic disease and we are also extremely appreciative of everyone who
supports our campaign by raising awareness in such a variety of ways.
Wherever you are
based and whatever role you play, be it front of stage or behind the scenes
- we thank you for your support.
more here -