Desperate need for ME research
LIKE approximately 500 residents of the borough of Hillingdon, I have the devastating neuro-immune disease myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
It is as disabling as multiple sclerosis and many people are ill for decades.
My own illness started after a glandular fever infection and I’ve been ill for six years now.
I recently lost the job I had for more than a decade because of the illness.
It can strike any racial, ethnic or socio-economic group and at any age and it often starts as a result of an infection.
There is now an abundance of evidence that the illness is biomedical, with abnormalities in multiple systems in the body, including the immune, nervous and hormone systems, as well as the heart.
There is a desperate need for more research.
Many children have the disease and some do not recover and never have the chance to complete their education, have a career, marry or have a family.
Dr Ian Lipkin, of Columbia University, in New York, an internationally-renowned researcher, called ‘the world’s most celebrated virus hunter’ by Discover magazine and well-known for helping to contain the SARS epidemic in China, is raising money for a study of the bacteria, viruses and fungi in the gut and their role in ME/CFS, using highly sophisticated DNA sequencing techniques.
He believes that the gut microbes are ‘where the action is’ in this terrible illness.
And in the UK (separately), a much-needed Biobank has been set up, the first of its type in Europe, collecting blood and tissue samples from patients.
It is led by the London School of Hygiene and Tropical Medicine, and serves as an open resource for biomedical research into ME/CFS, enabling a wide range of research studies.
Both these initiatives could lead to a desperately needed understanding of what causes this disease and to treatments.
However both are under-funded and urgently in need of donations.
I have donated to this research and I hope other readers will too, via www.microbediscovery.org and www.lshtm.ac.uk/mecfs. them encroaching on their pretty half of the borough.
Thanks to the London Borough of Hillingdon’s concept of government, we are a divided populace, a divide that will never be mended.
When we had a Hayes and Harlington Council, I can remember a well-kept and pretty London suburb full of floral parks and pretty open spaces that was the envy of many, a typical example being the yearly floral display on the south side of the Grapes Road junction at Coldharbour Lane, a veritable splash of colourful flowers, that soon to came to an end when we were kidnapped by Uxbridge.