in ME Newsletter - April 2013
Invest in ME Newsletter
Welcome to Invest in ME's April 2013 newsletter
IIMEC8 - Mainstreaming ME Research
Registration is still open for the 8th International ME Conference in London
on Friday 31 May 2013.
Since our last newsletter we have added Professor Greg Towers from UCL to
the list of speakers.
The main focus of the charity has been to improve education and raise
awareness of ME and lobby for a sound strategy of biomedical research into
To this end our 2013 conference focuses on the initiatives and biomedical
research which are underway to find the cause of this disease and produce
biomarkers for more accurate and earlier diagnosis.
The theme around the 8th annual Invest in ME International ME Conference
2013 is Mainstreaming of ME Research - reflecting our view that research
into ME has become a major area to be considered by anyone wishing to
perform at the forefront of medical research need look no further than ME.
The IIMEC8 theme focuses on infection and immunity and gives a platform to
the latest initiatives occurring at present in ME research.
The Medical Research Council (MRC) in the UK, the Food & Drug Administration
and Centres for Disease Control and Prevention in USA have created
initiatives for new biomedical research into ME. In Norway the Norwegian
Health Directorate have allocated funding for biomedical research into ME
following the 2011 double blind randomised clinical trial using Rituximab
(Anti-CD20 monoclonal antibody) by Fluge et al (PLoS 6:10.Oct 2011) to
successfully treat ME patients.
There is increasing research evidence of immune dysfunction in ME patients.
Even the UK MRC states -
"There is now preliminary evidence supporting the view that inflammatory
mechanisms in the brain and spinal cord may underlie the pathophysiology of
some severe disease CFS/ME phenotypes. Biobanks are now becoming available
and create a unique opportunity for interrogation."
We are pleased to once again be able to showcase developments around major
existing projects such as the above mentioned clinical trial using
monoclonal antibody, rituximab, to treat ME patients (Haukeland University
Hospital, Bergen, Norway) , advances in immunology (Griffith University,
Queensland, Australia) and pathogen discovery and pathogenesis (CFI,USA) and
The Open Medimcine Institute initiative OMI MERIT.
The charity is also planning on holding a researchers meeting the day before
the main conference to encourage collaborations and the sharing of ideas and
of knowledge [click
Details of our speakers are available here [click
A conference leaflet is available to download [click
here] along with other conference documentation.
Meeting with Dr Martin McShane
Invest in ME were able to meet with Dr Martin McShane – NHS
Commissioning Board Authority, Director - Domain 2-
Improving the quality of life for people with Long Term
Conditions). Read more via the newslet
A Tale of Two Collaboratives
Research into ME should be clear and obvious. This is not a new disease and
the suffering and devastating effects of the disease on patients and their
families has been chronicled for a generation.
Yet comparatively little biomedical research has been funded, no joined-up
thinking has been applied to the research and the research landscape has
remained bare - lacking agreed and correct diagnostic criteria, lacking
adequate funding and lacking correct and rational information.
In the UK two collaborative meetings for ME research are planned.
The Alison Hunter Memorial Foundation of Australia and Invest in ME are
cooperating to increase collaboration and awareness and to encourage new
researchers to the field we are arranging a research meeting which brings
together major researchers in order to crowd source ideas on ME research.
Read more via the link
IT FOR ME
The Biomedical Research Fund, which is currently dedicated toward funding of
the foundation biomedical research project in the proposal for an
examinations and research facility in the UK, has now reached £89,000.
In Norway the Norwegian ME Asssociation and The ME and You Foundation are
raising funds toward a large scale rituximab trial by Drs Mella and Fluge.
The Norwegian Health Directorate has already allocated some funding for this
research but donations from the public can help make things happen quicker.
9 million NKr is required. More details [click
Many people spend vast sums of money on unproven treatments for ME, often
without any improvement being gained. This is entirely understandable but
the only way to get treatments that help everyone safely via public health
services is to get clinical trials performed. Biomedical research into of ME
leads to better patient care and better doctor patient relationships.
Funding will usually follow discoveries but it is important that charities
keep raising funds for strategic initial projects and encourage researchers
to stay in this field.
We continue the work on initiating other trials also.
New IiME Ad in London
IiME placed another ad in London Business
Matters in January
in order to raise awareness of ME and
the charity's attempts to begin a strategy of
biomedical research into ME. The full page advert in
London Business Matters (magazine of the London
Chamber of Commerce) was the fourth time we have
Invest in ME now have
available printed copies of the International Consensus Criteria for ME -
the ICC Guidelines.
These are currently
available for £1 per copy plus postage and packaging.
"The extent of this ignorance in a doctor is just frightening.The fact they
they have not kept up their medical knowledge is cause for grave concern.
The carer of an M.E. loved one is like no other carer.
Not only is it imperative to learn about myalgic encephalomyelitis in order
to give the specialist care required for M.E. (to avoid causing them further
harm), it is also necessary to become their protector." Read more of Diane's
story - Lili
All Things Beautiful
This is the name given by Valerie Moody to her ME awareness event in June in
Co Donegal, Ireland, on 22nd June 2013.
As she has done previously all funds raised in Sterling will be given to
Invest in ME and in Euros to Tom Kindlon's Irish ME/CFS Association.
Valerie has asked IiME to encourage as many ME sufferers as possible to send
her their personal story plus photo as she believes it is an important way
to use our collective voice. This would also allow others to know that
people with ME are not isolated to one area - that it is global problem.
If you would like to contribute to this with your story then please send in,
via email if you wish, your story with a photograph. We will print these
and/or send them to Valerie.
New Research from
Increased brain white matter axial diffusivity is
associated with pain, fatigue and hyperalgesia in Gulf War Illness. PLOS
ONE. 2013; 8 (3): e58493
Rayhan RU, Stevens B, Adewuyi O, Timbol C, VanMeter JW,
Walitt B, Baraniuk JN.
The paper has also been covered in the British Medical Journal (BMJ) and top
newspapers in the US, NPR radio, television news, and specialty science
Rakib Rayhan will be speaking at the Invest in ME IIMEC8
conference in London in May.
Here are the links to the news articles:
Archive News items
Catch-Up January 13
Short entries from earlier in 2013
Biomedical Research into ME
The PACE Trial recovery rates
of Knowledge Report
Let's Do It For ME - Funding
for ME Research
Debate on Atos Work Capability
Assessments Useful Links
Trials to be Reported
Biomedical Research Collaborative
Meeting - Crowdsourcing for ME
ME Chat asked us to highlight
their ME Awareness Leaflet -
Events for IiME
The current events raising money for biomedical research into ME via
listed here. We would like to thank all those making such great efforts
to support the charity and riase awareness of ME.
IiME also have a chance to win £2000 for
biomedical research into ME via the Direct Debit competition for good
causes. One can only vote once but we would be grateful for all votes cast
via facebook -
the link is here.
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