Friends and neighbours!
Marghe, Helen, Tommi, Alessandra, Edouard, Ian and I will be running the Royal Parks Half Marathon to raise money for a charity that is leading the charge to fund and facilitate a strategy of biomedical research into ME.
As some of you know, my sister Manon suffers from ME (Myalgic Encephalomyelitis). The symptoms range from severe exhaustion after minor physical effort, like walking up stairs, to a complete inability to move or speak necessitating feeding by tube.
ME is poorly understood and research into its causes is severely underfunded. (It's estimated that 15-30 million people worldwide suffer from the condition - the disease affects around three times as many people as HIV.)
Though progress is being made, this progress is only possible with the support of donations. With little to no government funding, the research landscape in the UK and the the rest of the world is almost exclusively funded by voluntary donations.
Where the research is headed:
- Researchers are working to understanding the biology of the disease. For example, by figuring out which chemical steps in ME patient’s energy creation process do not function properly.
- Woking to find treatments and cures. There are some promising drugs in early stage trials. One of the leading researchers is Professor Ron Davis who played a key role in the Human Genome Project and now heads the Stanford Genome Technology Centre - Professor Davis has a personal stake in this – his son is affected so severely by ME that he is unable to move and is fed intravenously. Spurred by his son’s condition, Professor Davis is now leading the End ME/CFS project in the USA which is cooperating with other researchers globally.
While the various researchers are making progress and believe it should be possible to find a cure in our lifetimes, this will only happen if their research is funded. At the moment they remain chronically under funded.
Some more detail on Invest in ME Research: Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS). The charity is run by volunteers - patients or parents of children with ME - with no paid staff. Overheads are kept to a minimum and all funds raised go to promoting education of, and funding for, biomedical research into ME.
Their current focus:
- creating solid foundations for a research programme on ME
- solving scientific questions relating to ME
- finding treatments that are based on research evidence
- raising standards on all levels of patient care
- facilitating European and international collaboration
Some of Invest in ME's current projects:
- Centre of Excellence: A UK/European hub for biomedical research into ME
- High-quality biomedical research from top researchers in the leading European research park, complete with university and university hospital
- A clinical trial which will raise the profile of ME and achieve scientific objectives
- A GP fellowship to educate GPs and create champions in clinical care for people with ME – that will continue as a regular feature of the Centre PhD students introduced to research (3 per year for 5 years) as part of the five year plan to implement the Centre
- A scheme for medical students to be involved in research into ME at the Centre which allows them to have a sound knowledge of ME that will influence their peers and take that forward in their careers.