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 this disease. 

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 here].

Details of our speakers are available here [click here].

A conference leaflet is available to download [click here] along with other conference documentation.

Newslet link

Recently 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 link

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 

Newslet link

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 here].

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.

Newslet link

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 advertised this.

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.

Newslet link

Short entries from earlier in 2013

• Funding for Biomedical Research into ME

• Christine's Legacy

• The PACE Trial recovery rates

• NIH State of Knowledge Report

• Let's Do It For ME - Funding for ME Research

• Debate on Atos Work Capability Assessments Useful Links

• Call For Trials to be Reported

• Biomedical Research Collaborative Meeting -  Crowdsourcing for ME

• ME Chat asked us to highlight their ME Awareness Leaflet - click here

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