in ME Newsletter - July 2013
Invest in ME Newsletter
IIMEC8 - Mainstreaming ME Research
The IIMEC8 conference and Biomedical Research into ME Collaborative meeting
(BRMEC) were the most successful yet.
Mainstreaming ME Research was the theme and title of the conference -
Infection, Immunity and ME - reflecting our view that ME research is finally
accepted as part of proper science and deserving of consideration for
careers in research and for funding.
There was a great sense of optimism about the future of ME research. New
researchers are learning about ME and becoming interested in this area of
medicine. The data is pointing clearly to immune system dysfunction and the
detective work is well underway to help solve at least some of the mysteries
in this very complex illness.
Many of the body's systems are involved and there is a great deal of work
for researchers from many different areas in different countries.
Diagnosis is still problematic as patients vary a lot and without careful
history taking and the right kind of questioning many treatable conditions
may be missed. On the one hand doctors need to be very careful before giving
patients an ME diagnosis and on the other hand one has more success of
treating patients successfully if the condition is recognised early. The
feedback from the events confirm IiME's views -
conference report has been written by Dr Ros Vallings -
One can also read Mark Berry's report here -
IIMEC8 Pre-Conference Dinner
On the evening before the conference Invest in ME invited Open Medicine Foundation executive director, Linda Tannenbaum, to present "There Is A Plan".
Almost 90 people heard Linda discuss OMI's plans for
Mainstreaming ME Research. The presentation in full is on our conference DVD.
IIMEC8 Conference DVD
The design and editing of the IIMEC8 conference DVD is just about
completed and is about to be produced and distributed.
Unfortunately we have had a request from Dr ōystein Fluge and
Professor Olav Mella to hold off from including Dr Fluge's
presentation in the DVD at this time.
This is because the Norwegian researchers have still not finalised
their hypotheses for symptom maintenance in ME and do not feel
comfortable with having this material distributed at this time. We
are therefore bound to honour our agreement with Professor Mella and
However, the DVD still holds a great deal of education. It was the
best conference yet.
We will retain the presentation from Dr Fluge and hope to come to an
agreement on when it can be released at some point in the future.
The DVD can be ordered via this link -
IiME BRMEC MEETING
Prior to the conference IiME and AHMF had organised and hosted the Biomedical
Research into ME Collaborative (BRMEC) meeting. This would actually be third
such annual meeting organised in London around the conference events (we held a
round-table "Corridor Conference" in 2011
and the two-day Clinical Autoimmunity Working
Group (CAWG) meeting in 2012.
We brought together 40 biomedical researchers from nine different countries to
discuss, educate, cooperate and form collaborations in the future - for the
benefit of all people with ME and their families.
The meting was a huge success with many complimentary comments being made by the
The researchers continued to network at the IiME pre-conference dinner in the
evening. There were many threads and new initiatives created by this meeting and
it justifies IiME's views that biomedical research into ME needs to be the focus
of effort and funding if we are to create cures/treatments for this disease (click
IiME continue to follow up many of the opportunities created by this meeting.
A UK RITUXIMAB TRIAL
The charity is pleased to announce that following the IIMEC8 conference events
we have started the planning for a UK rituximab trial.
In a very short time over £12000 has been raised for this trial reflecting
confidence from our supporters and reflecting the urgent need for this trial.
As soon as we are in a position to announce more about this planned trial we
shall do so - but the following statement demonstrates that we have come a long
way in preparing for this.
Well conducted clinical trials are desperately needed for ME patients and the
best evidence for a treatment so far comes from Norway and to validate this
research one needs to run trials in other countries too.
We are confident that we can complement the Norwegian research by initiating the
UK rituximab trial.
We welcome all support for this expensive, but necessary trial and feel
confident this is the correct approach.
Donations to make this happen may be made via the links on the link to the
IiME FOUNDATION PROJECT
We are pleased to announce that the funds were raised for the foundation project
for the IiME proposal for an examination and research facility in Norwich
With great help from our IiME/LDIFME volunteer supporters the planned PhD
studentship, which is looking at gut microbiota in ME patients, was advertised
The closing date for applications was 24 June and the start date for the project
is 1 October 2013. More information of the project can be
The project was also presented by Professor Simon Carding at the Invest in
ME/Alison Hunter Memorial Foundation BRMEC meeting in London prior to the annual
The situation of severely ill bedbound ME patients was also discussed by some of
the presenters at the 2013 IiME conference. Some extemporaneous notes on severe
ME from the conference, and after, are available here.
Doctors simply do not know what to do with these patients so there is an urgent
need for education.
BIG FINISH PRODUCTIONS
BLUE RIBBON FOR ME
Another Invest in ME supporter, Jessica Jade, has a novel idea for
fundraising anyone can join in.
Let's get trading!
ALL THINGS BEAUTIFUL EVENT
Valerie Moody organised a huge ME awareness and
fundraising event - 'All
Things beautiful' - in Co Donegal in Northern Ireland on 22 June 2013.
We thank Valerie and her family and friends for such great effort.
In 2011 Valerie published a book called 'Someone like ME' and Invest in
ME received part of the proceeds that Valerie raised with this
Those funds went towards helping Invest in ME organise and host the
first Clinical Autoimmunity Working Group (CAWG) meeting in London in
collaboration with the Alison Hunter Memorial Fund.
Valerie is extremely inspiring as she is always positive despite her
severe illness and looking for ways to make progress just as the young
Alison Hunter. Valerie is an extraordinary example of courage and hope.
IiME WIN DIRECT DEBIT COMPETITION
An IiME supporter has been thinking of introducing a Carer's Group for
ME. As any carer knows it is not only the patient whose life is affected
and with ME there are even less support network structures to help
patients and carers than for other illnesses.
So Invest in ME are inviting people to write to us if you would be
interested in forming this. There are many ideas which can be introduced
into this with the objective being to improve the lives of carers and
More information will be developed in the link to the right.
Contact us at firstname.lastname@example.org
if you would be interested.
We are pleased to publish a series of cartoons created by an ME patient
who wants to remain anonymous.
These cartoons have been created over time due to severe illness and
they reflect the person's own experiences of being diagnosed with ME.
These cartoons really show how an image and a few words can convey a
message really well.
It's a Funny Old World - The Absurdity of Psychiatry.
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