The Unsung CFS Heroes and Heroines (part one)
Research Study Participants
By John Herd
September 12, 2010
Throughout the history of CFS there have been many CFS patients who participated in research studies and off-label clinical trials. They are unsung heroes and heroines who have contributed significantly to the legacy of what we know about the illness today. The scientific progress has moved forward in part upon their backs.
It is fair to say that desperation to get better, even partially better, has driven some people to take part in research and clinical trials. But so too have many of them wanted to contribute to moving the science of understanding and treating CFS ahead.
Participating in medical research studies often comes at a cost on many levels. Sometimes it is relatively negligible, a mere needle stick to contribute blood. Other times it involves consuming significant amounts of one’s very finite physical energy and economic resources to participate. Some studies have risked causing patients’ health to decline temporarily or even for relatively longer periods of time. In the case of blinded studies, patients have participated knowing that if they receive a placebo there would be no health benefit at all. Participating is medical studies has quite literally in some cases turned some patients’ lives upside down because it has required them to move to where the studies have taken place.
In all cases patient participation has contributed to moving the science ahead, helped reveal where the science needs to head, and in other cases where it should not go.
There will be many more such patient heroes and heroines in the months and years to come. I applaud them and those whom have come before.
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