ME Research UK
The Gateway
North Methven Street
Perth PH1 5PP

November, 2007

Dear Lynne

Following on from our letter of thanks for the recent donation to ME Research UK from the VegEPA for ME Scheme, I thought I’d write a more personal note with information that you could share with your membership which has been the bedrock of the incredible £13,700 donated from the scheme to date.

Medical research is expensive - one medium-sized clinical trial can cost £300,000 and can possibly have an inconclusive result - and, in an ideal world, we would have ring-fenced money from the MRC available to researchers for true biomedical investigation of ME/CFS. Until that day dawns, the onus is on charities like MERUK which has a specific research-centred remit to fund pilot or seed-corn investigations in the short to medium timescale and, resources permitting, the occasional medium sized project. The resulting publications from such projects helps to build critical mass in the scientific literature and the data obtained can form the basis of researchers’ subsequent applications to major funders such as the MRC. Fortunately, support is increasing, and we have recently been able to action new funding for the three projects below which have yet to be formally announced:

1. Non-invasive structural and functional neuro-imaging in ME/CFS (Professor Basant Puri, Imperial College London). Happily, agreement has now been reached for the resumption of this important study, and the revised investigation will begin shortly, with funding from ME Research UK, the charity ME Solutions and the MRC Clinical Sciences Centre at Imperial College London. The recent announcement read:

We are delighted to announce that the study, “Non-invasive structural and functional neuroimaging in ME/CFS” will be resuming shortly. The revised investigation is jointly-funded by the charities ME Research UK and ME Solutions, and the MRC Clinical Sciences Centre (Imperial College London).
The lead researcher and grant-holder, Professor Basant Puri of the MRI Unit, Hammersmith Hospital London, will examine twenty-six patients (fulfilling the 1994 CDC Diagnostic Criteria and the Canadian Consensus Criteria for ME/CFS) and 26 age- and sex-matched healthy controls over the course of 18 months, with recruitment beginning shortly. Each person will undergo a full medical history, a full physical examination and MRI scanning. Generalized linear modelling will be used to analyze the statistical relationship between clinical symptomatology and the imaging parameters.
Given that central nervous system symptoms are part of the ME/CFS spectrum - and are indeed as characteristic as the post-exercise malaise, myalgia or the myriad of other symptoms that people experience - the main objectives of the investigation are to assess the nature of any cerebral and cognitive neuropsychological changes in people with the illness and the relationship of these to clinical symptoms. These may reveal underlying anomalies that could lead on to a large programme of research.
We very much appreciate the considerable interest of the patient body in this project. Our concerns are that the project has the opportunity to proceed as speedily as possible and, as such, we would appreciate that inquiries to Hammersmith are made only where absolutely necessary.

2. Study of single nucleotide polymorphisms within CFS-associated human genes (Dr Jonathon Kerr, St George’s University of London). We are delighted to have been able to contribute a substantial amount to the next phase of Dr Kerr’s work on gene expression profiles in people with the illness, and further details will be announced shortly. This funding is in addition to that already awarded to this group by MERUK and the Irish ME Trust, for work comparing the gene signature in ME/CFS patients to that for veterans of the first Gulf War.

3. Exercise tolerance in patients diagnosed with ME/CFS (Professor Brian Macintosh & Dr Eleanor Stein, University of Calgary, Canada). The aim of this pilot study is to examine 24-hour recovery from a post-exercise challenge test, comparing Canadian criteria-defined patients with healthy controls. It might be that dual incremental exercise tests separated by 24 hours may be a useful method for diagnosis of this condition.

Those projects which we have already announced can be seen here http://www.meresearch.org.uk/research/projects/ongoing.html and at present there are three new projects undergoing peer review assessment.

All of our financial support comes from ground-level fundraising by patients and their families and friends, so we are very grateful for the donations that the VegEPA scheme has made to ME Research UK’s research projects. We would be delighted to see some of your members at our International Conference on ME/CFS Biomedical Research http://www.meresearch.org.uk/newhorizons2008.html, jointly hosted with the Irish ME Trust, on Tuesday 6th May 2008 at the Wellcome Trust Conference Centre, Wellcome Trust Genome Campus, Cambridge, UK.

Dr Neil C. Abbot
Director of Operations
ME Research UK
The Gateway
North Methven St
Perth PH1 5PP, UK