It is with sorrow that I have to write this letter.  Due to auto accident injuries, I have been much more severely impaired, and unfortunately I'm not getting better.  As a result, I had to step down from the Director's role.  This will necessitate changes in the organization that Diane will discuss in her message.

In looking back, I can't believe that it has been 20 years since I started this journey --my how time flies!  I have dedicated those years to educating, supporting and empowering people with CFIDS and FM.  I've committed over 50,000 hours to building and growing this organization.  They were hours very well spent.  This commitment has been a labor of love-- always challenging and never boring.  I believe we are all the better for it.  I leave with a sense of pride in all we have accomplished over these 20+ years.  I can only hope that others will step forward and take up the mantel to help sustain our great organization.

When we started the first support group in 1983, I had no idea what this organization would grow into.  These illnesses did not even have names, let alone any treatment options then.  Now Mass. CFIDS/FM Association is the oldest patient support organization in the country.  We expanded into a support group network in 1984, and started our education programs, something very dear to my heart.  Ironically, we were still an informal organization in search of a name for our illness.  It was then called the 'disease of a thousand names:' post-viral fatigue syndrome, chronic mono, neurasthenia, Icelandic disease, myalgic encephalitis, fibrositis etc. 

In January of 1985, the publication of the, then, seminal article in JAMA finally gave our illness a new name (at least for the eighties)-- Chronic Epstein Barr Virus (CEBV).  That moved us to formalize our statewide organization and name it the Massachusetts CEBV Association.  We also started our highly-acclaimed newsletter, The Update, in 1985-- continuing our mission of providing quality medical information to our members, the medical community and the general public.  We then added our information line and lending library, followed by our physician referral and disability guidance.  In addition we developed innumerable special programs over the years to better serve our members.

Our advocacy and public awareness campaigns followed at the state, regional and national levels.   We were founding members of the first national CFIDS advocacy campaign, CACTUS.  Our organization has pioneered many critical issues through our advocacy campaigns over the last 20 years --giving voice to those with CFIDS & FM.  Our support group network has expanded to the largest network in the country – over 30 support groups throughout New England.  We have reached out to many thousands of people with CFIDS and FM in New England and around the country. 

I want to thank all of the wonderful people, present and past, who have made this the great organization that it is, and that I know it will continue to be.  They are too numerous to mention, but I would like to especially thank our President, Diane Turner.  She has made invaluable contributions to our national advocacy efforts, public awareness campaigns and fundraising.  Her leadership, spirit and determination as President the last two years have inspired us, and allowed us to stay the course over these challenging times.

Thank you all so much for your continuing support over the years.  You will be in my heart forever!

Warmest wishes for health and happiness in the years ahead,

Bonnie Gorman RN
Founder