Have you recovered from ME/CFS? If so, the ME/CFS/CFIDS International Recovery Register would like to hear from you...

Here's a recent press release from insightmatters.com

New Approach to Chronic Fatigue Syndrome Research

"Studying health instead of disease."

That's the motto of a key international study being conducted into the devastating illness known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. This little understood disease has no known cure and often strikes people in their prime, leaving many debilitated for several years or even decades.

Says the study's author, Stephanie Thompson, Director of Insight Matters in Australia, "Decades of research and millions of dollars have gone into studying the cause of this debilitating condition in the hope of finding a cure, but still we don't have a clear answer. It seems to me that an equally if not more important question is now to ask "What has caused the people who have recovered, to recover?"."

Thus was born the ME/CFS/CFIDS International Recovery Register, an online questionnaire for gathering data from recovered patients.

Thompson makes the point that medical research often misses key information by looking in the wrong place. "Scientific study of the mechanisms and pathogenesis of disease is interesting and very important, but not more important than the grossly neglected field of recovery research", she says. "What chronically ill patients really want to know is how to get better. No-one's been following recovered patients. They just get better and quietly disappear."

This is a disease close to Thompson's heart. As a Psychologist with a passion for Medical Psychology, she says that this study actually has little to do with her profession. "I understand research process and how to measure human experience, hence the questionnaire, but the main driver is having someone close to me who's suffered from CFS for over a decade."

In fact, until very recent times, ME/CFS patients have often been brushed aside by doctors, effectively accused of psychological malingering. "It's certainly not all in their heads!", says Thompson. "Some of these patients are almost laid to waste by physical symptomatology, and there are plenty of biochemical markers that we now know about."

The Recovery Register collects comprehensive data about ex-patients' symptoms, remedies which they tried but failed, and details of their eventual recovery.

To complete the ME/CFS/CFIDS Recovery Register recovered patients should go to:

http://www.insightmatters.com/CFS_RecoveryRegister.htm

The author of the study, Stephanie Thompson, can be contacted by email:

stephanie@insightmatters.com