Research Colloquium 2015
Invest in ME announced its plans for IIMEC10 - our tenth
International ME Conference 2015 - for Friday 29th May 2015
We also announced our fifth research Colloquium preceding
the conference for Thursday 28th May 2015.
The trustees have decided, after consultation with our
Advisory Board, to extend the research Colloquium to two
days, and the event will now be Wednesday 27th May to
Thursday 28th May.
This was the format that was employed in our 2012 Colloquium
- the Clinical Autoimmunity Working Group meeting [Clinical
Autoimmunity Working Group (CAWG) [
meeting in 2012.
Both events will be in London and we now have interest from
eight countries in participation and we continue to build
international collaborations to discuss and resolve this
The IIMEC10 celebrations will include a pre-conference
dinner following the research colloquium and the full day
conference itself - for the tenth year in succession taking
place in the heart of Westminster.
Ten years of of researchers, clinicians, healthcare
professionals, patient groups, patients and the media being
able to discuss, network and debate.
The conferences have made patients into partners in research
– something which is been ongoing and has been happening
regularly since the early IiME conferences.
Invest in ME/UCL Research
New Research Study
Having reached our initial target for the
IiME/UCL Rituximab trial, and with the preliminary B-cell
study in progress, Dr Jo Cambridge produced a project status
has formed a good working relationship and initiated
state-of-the-art research with worldclass researchers who
are the most experienced in the world in this area.
Following discussions within our Advisory Board on future
directions then we announced earlier in the month our
intention to fund a PhD studentship.
We have asked our supporters again to help us enable this
We are happy to accept pledges as well as actual donations.
As part of our objectives to form a solid base of biomedical
research we are committed to making this additional research
possible as it will secure the research we need into this
disease and will also
reinforce our plans for a Centre of Excellence for ME.
An update on this has now been produced for Invest in ME by
Dr Cambridge and describes the intentions with this research
Rituximab Web Site
UK Gut Microbiota Research Update
Our Biomedical Research Foundation Project
at IFR/UEA, the UK gut microbiota study, is now ending its
The foundation project was
devised in 2010, long before it became fashionable as an
area of research for ME, and was galvanised by the
launch of the Let's Do it for ME (LDIFME) campaign in
2011 to help the charity with fundraising. It took us
and our supporters three years to reach the first
funding target of £100 000.
We used Dr Lipkin's (Director
Centre for Infection and Immunity at Columbia
University) quote a year ago when the project began ["I
think the gut microbiome is going to be where the action
is (in ME)" - Lipkin
Presentation CDC Conference Call 10/9/2013 ]
We are pleased to see this
research being performed by a world class research
establishment at the Institue of Food Research/UEA in
Norwich Research Park.
The research team has
provided an update on the current status of his work -
After getting the first
project up and running it has been easier for the
charity to plan for follow on projects. The forming of
our Advisory Board as mentioned in our previous
newsletter has been very helpful. The charity has been
discussing with our advisors and we have provisionally
agreed with UEA the creation of two new PhD studentships
for this research in the research park which will cement
the foundations of biomedical research into ME for the
next three years.
A project description is
being formulated to complement the foundation project
and the charity has agreed to fund these subject to peer
The strengthening of the
research base and the continuation of the biomedical
research into ME work that has been started has been a
priority for IiME.
We are also agreeing with
IFR/UEA the funding of new intercalating medical
students who would spend time at Oxford university in UK
and Cornell University in New York, USA in ME related
research projects. This would mean that the charity is
funding three medical students to perform biomedical
research into ME - thus allowing real knowledge of the
disease to be spread around medical schools.
Our objective has been,
since 2007, to establish high-quality international
collaboration to resolve this disease - we are the
on the way to achieving this.
Possibly the two most important research
projects for ME in the UK"
Old (New) and New Research
from Dr Kerr and Professor Marshall-Gradisnik
Dr Jonathan Kerr was a regular presenter at our early
conferences but moved on from ME research. A paper from Dr
Kerr's research has , however, just been published.
J Clin Pathol doi:10.1136/jclinpath-2014-202597 -
Use of single-nucleotide polymorphisms (SNPs) to distinguish
gene expression subtypes of chronic fatigue syndrome/myalgic
encephalomyelitis (CFS/ME) - Nana Shimosak Jonathan R Kerr
Abstract - Aims
We have reported gene expression changes in patients with
chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
and the fact that such gene expression data can be used to
identify subtypes of CFS/ME with distinct clinical
phenotypes. Due to the difficulties in using a comparative
gene expression method as an aid to CFS/ME disease and
subtype-specific diagnosis, we have attempted to develop
such a method based on single-nucleotide polymorphism (SNP)
Abstract - Conclusions
This study provides evidence that human SNPs located within
CFS/ME associated genes are associated with particular
genomic subtypes of CFS/ME. Further work is required to
develop this into a clinically useful subtype-specific
Meanwhile Professor Sonya Marshall-Gradisnik's research,
presented at our IIMEC9 conference (and the embargo of which
caused a slight delay in our conference DVD delivery), has
now been published .
Abstract - Background
MicroRNAs (miRNAs) are known to regulate many
biological processes and their dysregulation has been
associated with a variety of diseases including Chronic
Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). The
recent discovery of stable and reproducible miRNA in plasma
has raised the possibility that circulating miRNAs may serve
as novel diagnostic markers. The objective of this study was
to determine the role of plasma miRNA in CFS/ME.
Abstract - Conclusion
Our study is the first to identify circulating miRNAs from
CFS/ME patients and also to confirm three differentially
expressed circulating miRNAs in CFS/ME patients, providing a
basis for further study to find useful CFS/ME biomarkers.
1. Brenu EW, Ashton KJ, Batovska J, Staines DR, Marshall-Gradisnik
SM (2014) High-Throughput Sequencing of Plasma MicroRNA in
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. PLoS ONE
9(9): e102783. doi:10.1371/journal.pone.0102783 [click
IiME suppporters continue to inspire with their fund-raising
and awareness projects.
We have previously written about Mike Shepherd's plan to run
the North Pole Marathon in April 2015 to raise funds for
Invest in ME [see
This will be quite a challenge for Mike and involves a
gruelling training schedule - and supportive family. You can
support him here http://www.justgiving.com/Mike-Shepherd or
just raise awareness via sharing the link.
Mike Harley (who led the amazing
92 in 92 event which visited all 92 football league
clubs) is also planning an extreme marathon - extreme in
terms of numbers -
click here - by attempting to
conquer Europe by running a full marathon in every country
in the EU (currently 28 in total). In this we will ask our
European ME Alliance colleagues for support.
Survivor Marathon Page
to the magic of Facebook I have been back in touch with a
childhood friend who I have not spoken to in over 25yrs (who
knew I was that old!!) Sadly she suffers with ME and even
though we made contact in April this year but due to the
debilitating illness she has we are yet to meet up in
person, and she only lives 7 miles away!
I am lucky enough to be able to attempt 120 obstacles
over 42km so I can raise some money to help fund research
and treatment then maybe one day she will be well enough to
Some fundraising news from the Let’s Do
it for ME blog
selection of fundraising news from the Let’s Do it for ME
From ME to You, With Love -
new website launched! By Louise Harding
“Since the book 'From ME to You, With Love'
launched in May, it has done incredibly well. Almost 250
copies have been sold, and the amount of money donated to
Invest in ME is now around £300 so far. The book is
available either in paperback or on Kindle.”
I swam the length of Coniston,
all 5.25 miles of it! By Sarah Loveland
“On Saturday the 6th September
Sarah Loveland swam the length of Coniston Water, all 5.25
miles of it, for Invest in M.E.
Sarah is a so-called ‘wellie’ but she has
friends with M.E.
Over the past year, her eyes were opened to
what a debilitating illness it is as she read stories of
individual challenges to raise funds, such as one person
walking to the garden gate. This inspired Sarah and she set
her swimming challenge, Sarah decided that if courageous
people with M.E could challenge themselves to raise funds
then she could swim the length of the lake for them. By
trade I’m a photographer at Sarah
Loveland Photography and this was only her second year
of open water swimming. Last year when I started I wasn’t
very good and I could only do half a length of the pool
front crawl. I built that up to complete several one mile
events. At the start of this year 5.25 miles seemed
impossible but I was determined. Stubborn, determined and
perhaps a little but crazy!”
Fundraising for ME! By Jane Hurst
“I have suffered with this horrible illness
– ME – for over 16 years. I also have Dysautonomia, and was
recently diagnosed with Elhers Danlos Syndrome. I have too
many symptoms to list, most of them invisible, but the
symptoms that cause me most distress are the severe chronic
pain and the disabling and very uncomfortable
circulatory/cardio vascular problems. I spent the first 2-3
years of the illness completely bed-ridden & all of the past
16 years housebound (mostly bed-ridden) but due to the pain
I experience now I am unable to lie down and sitting down is
too painful a lot of the time, so life is extremely
difficult, having to stand hunched over my bed for hours
each day even though this causes me to feel very faint &
exhausted. I try to be positive but if I’m honest most days
are nothing short of an endurance. This is also the case for
many of my fellow Severe ME/EDS sufferers.”
We thank all the great supporters of IiME who have set up
Just Giving pages to raise funds for our work. Please
support these events as much as you can. Even if you cannot
afford to donate you can help by highlighting these great
Christmas cards 2014
The 2014 Christmas card competition has closed and Julia
Cottam and the
team have again produced some fantastic results which will
once again raise the profile of ME as well as potentially
help raise vitals funds for biomedical research into ME.
We are just deciding the format and sizes of the cards but
we have already decided the price and these can be seen on
our Christmas 2014 page.
We also still have some Christmas cards over from last year
which are available - including the Independent Newspaper's
Indybest Christmas card winner
by Julie-Ann Gylaitis.
We have reason to hope that permanent change is on the way
thanks to the efforts of IiME supporters.
The new research we have been able to initiate independently
has real possibilities to change the way ME is perceived by
the medical profession and the general public and we know
this is already influencing what is happening elsewhere.
During all the years before IiME could initiate this
research we, along with other individuals and organisations,
had to campaign and lobby to try to break the stalemate
which establishment organisations had quite happily allowed
One of the most notable advocates has been Margaret
Her factual commentaries on what has been happening with ME
have been indispensible. Margaret Williams's articles have
empowered patients to challenge dogma and poor science and
overcome the inaccuracies and policy-based evidence making
which has been allowed to exist regarding ME. An enormous
debt is owed her - something which will become more and more
apparent as time passes and change is made.
We are no great seekers of awards but there are few with
better credentials for deserving worldwide recognition than
(An example of
MW's articles - THE
IMMUNOLOGICAL BASIS OF ME/CFS: what is already known? A
compilation of documented immune system abnormalities in
ME/CFS from 1983-2011 - is in the Journal of IiME Volume 6
Issue 1 2012 http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%206%20Issue%201.pdf )