London, United Kingdom (PressExposure) December 05, 2009 -- Spurred on by new research suggesting a link between Chronic Fatigue Syndrome (CFS/ME) and a new retrovirus, XMRV, sufferers have turned to Google Maps to create a global picture of the disease.
The map, http://xmrv.me.uk/me-cfs-global-map.php, has had almost 4000 hits in the 2 days since its launch. The founder of xmrv.me.uk has a personal interest in raising awareness of CFS/ME & Fibromyalgia and hopefully seeing more investment in research into the disease. His sister has suffered with the illness for the last 16 years and been bedbound, in severe pain, for the last 4 years.
Of the Google Map an xmrv.me.uk spokesperson said: "It's about creating a community. Seeing sufferers on a map brings home the fact these are real people in real pain, not just statistics."
According to xmrv.me.uk this innovative use of web 2.0 does three things: "It allows CFS and Fibromyalgia sufferers to see who in their locality is also suffering from the illness; it may help spot trends or "hotspots" where the disease is more prevalent; and it helps sustain interest in this painful and debilitating disease."
Myalgic encephalomyelitis (ME), Chronic fatigue syndrome (CFS), and Fibromyalgia (FM) are debilitating illnesses which have no cure and leave sufferers' lives in ruins. Even those with the best ability to adapt and cope often suffer from the abuse of other well-meaning people who think the ill somehow brought these illnesses upon themselves or that the illnesses don't really exist.
A new study published in the journal Science found the retrovirus XMRV (xenotropic murine leukemia virus-related virus) in 67% of patients with ME. Only 3.7% of the healthy controls studied harboured this infection. Later, the researchers reported up to 95% of patients test positive for XMRV with antibody testing.