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Newton Highlands, MA
Nominated by Lucy Dechene, Ph.D.
Massachusetts CFIDS/ME & FM Association
International Association for CFS/ME
The Clifford Beers Guidance Clinic
Length of Service:
More than five years
Hours per Month:
March 14, 2012
We are pleased to nominate Alan G., M.D., president of the Massachusetts CFIDS/ME & FM Association, which provides education and support to patients in Massachusetts who live with the Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Fibromyalgia, both severely debilitating and much misunderstood illnesses. Alan had been involved, off and on since 1988, with the Association, but had been inactive for a while when we called on him to help out again in 2007. A few volunteers had been maintaining all of the services for many years, but could no longer do so without additional assistance. Alan, then retired, aged 77 and a patient himself, agreed to form a committee to see what could be done, and also agreed to serve "temporarily" as President. He has spent an average of 23 hours per week working for Mass. CFIDS since 2008.
In the 4 years of Alan's leadership, the Association has developed a new website which has an international reputation for comprehensive patient information, has grown from 5 to 40 volunteers, from a handful to over 100 members with a newsletter mailing list of 690, restarted a public statewide educational lecture series and obtained a significant grant to ensure operations for at least 5 more years. He has formed close working relationships with similar patient organizations in neighboring states, and also reached out to policy makers at the national level (including Dr. Elizabeth Unger of the Centers for Disease Control) to advocate for patients with these illnesses and for better physician education.
At the same time, Alan was an important volunteer for the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, a worldwide group for researchers and physicians. As Alan has said, "Seeing the need in Massachusetts and other states for better physician education, I urged the creation of training materials for clinicians [by the IACFSME]." As a result, he has spent more than five hours a week since 2010 as a key member on an international committee developing a Primer for Health Care Professionals to provide guidance on how to diagnose and treat the Chronic Fatigue Syndrome. This has just been completed and will be distributed worldwide.
As a former medical director of the Clifford Beers (child) Guidance Clinic in New Haven, CT, he was also asked by the clinic to help write a history of the first 68 years of its existence. All of the authors expect to finish the history next year.
These activities not only have benefited the estimated 27,000 CFS/ME patients in Massachusetts, but will also help physicians and patients throughout the U.S. and in other countries. For 4 years Alan has devoted almost full time to this work, driven by a desire help the Association accomplish its mission of supporting and providing assistance to patients and their families while working and advocating for effective medical research and treatments that will both alleviate patient suffering and lead to a cure.
As Alan has said, "The three organizations I have worked with have provided much pleasure and fulfillment, working with wonderful and interesting people and accomplishing concrete results in a team setting. I feel extremely lucky to do what I have been doing. I really haven't left medicine, I am just doing something different."
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