By Abbie Cornett,
A Chance to Participate in a Gene Study for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Patients with chronic illness frequently feel as though their bodies have betrayed them, leaving them with little or no control over their health. And, when it comes to treatment, they often feel as if they are outside looking in on a medical system they rely on to survive.
One way patients can contribute to the treatment of their and others’ diseases is to participate in research studies. In these studies, patients can regain some control over their illness by helping science improve current treatments, learning the contributing factors that led to their disease and helping pave the way to a cure.
Recently, IG Living became aware of a large gene study through the Institute for Neuro Immune Medicine (INIM) for people diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Dr. Nancy Klimas, director of INIM, explains the goal of the study is to “better understand which gene mutations give people a better shot or worse shot at therapy.” Its aim is to collect genetic data from a minimum of 1,000 ME/CFS patients (and preferably more than 10,000 patients).
To participate, patients can email MECFSGenes@Nova.edu to have a personalized, encrypted link to a secure website emailed to them, which will explain how to proceed. A pre-screening questionnaire consisting of 11 questions will determine if patients are eligible. If eligible, patients will complete an additional two surveys and will be asked to upload their genetic data to the study’s website. Genetic data can come from any public genetic testing site, including 23andme.com, Ancestry.com, Family Tree DNA, Gene by Gene, Pathway Genomics, GeneSight and any genetic test conducted by patients’ physicians.
We encourage anyone with a diagnosis of ME/CFS to contact INIM. Or, if you know someone who has this disease, we ask you to please share this information. There is no cost to participate, except for the genetic test. In addition, all communication is conducted via a secure email server, and no travel is necessary. For more information, go to www.nova.edu/nim/research/mecfs-genes.html or www.igiveforkids.com/events.html