Two years ago, a study found a link between XMRV, a retrovirus, and Chronic Fatigue Syndrome. A recent article in the Wall Street Journal examines the conflict that exists when patients become advocates, pressing government officials and campaigning to press scientists and governments to get busy on researching a cure. Scientists are warning that in some instances, patient advocates rushing research can backfire.
In the case of CFS, conflicting studies, labs that have not found a single case of XMRV in CFS patients or healthy patients have led to a storm of controversy.
But scientists do not have the same sense of urgency as do patients and their families. Patient pressure brings attention to diseases that might otherwise languish, without the fierce spotlight of internet and media attention.
For more than 25 years, the patient community has tried to push forward more research, in an effort to locate a cause to this insidious condition that has cost scores of patients their livelihoods, their homes, their families and anything else significant to them. Studies have estimated the cost of CFS to be approximately $ 7 Billion annually.
While this particular article closes with the tale of a patient advocate and a scientist coming to realize that they are indeed on the same side, the controversy over CFS continues. And as long as there is even a hint that CFS is not a disease caused by a physical ailment, our battle to represent CFS patients against long term disability insurance companies that seek to deny or delay benefits will continue.