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By Alan Cocchetto, NCF Medical Director © 2015

From Fall 2015 Forum

When I joined the ranks of the NCF in 1997, I never imagined that I would still be plugging away, some odd 18 years later, writing occasional columns like this one. One phone call to Gail Kansky, back in ‘97, did it for me and I climbed on-board. What the heck was I thinking? It must have been a weak moment or better yet, perhaps it was because I was ticked off about this disease and the lack of true progress being undertaken medically speaking. I remember spending a week at the Cleveland Clinic in the early 90’s, where I had been diagnosed, and commenting to one of the doctors, “How can this disease be so bad yet there is so little known about it?” Back then, I had been told that the Cleveland Clinic was seeing 300 newly diagnosed cases per month; certainly enough to support an entire medical staff.

Well, just like many of you, I am very sick of this disease due to the simple fact that it invades and impacts all aspects of everyday life. Let there be no mistake, this feels like death warmed over. Fatigue, that’s a laugh. This is more like a toxic poison that will cripple you. Like you, I have observed immense suffering in my fellow patients during my 25 plus years with this disease. I have lost close friends who have died from this disease and I have come to realize that, “This has been a journey through hell!”

Ironically, as our disease knowledge has evolved, I have also come to realize that, “This has been a hell of a journey!” As the NCF’s Medical Director, I have one of the best seats in the arena and because of that privilege, I have watched as the NCF has made a huge effort to undertake the necessary research to prove cause and effect and to create a good working model or road map for this complex disease process. As a result, what do I really think? I believe that, “We are living a miracle in progress.”

All that any patient truly desires is to get better or at the very least to have a chance to do so and to subsequently move on with their own lives. Here at the NCF, we recognized early on that without engaging in the right kind of scientific work, this would be an impossible dream to achieve. Well, I believe that all of us who have worked at the NCF for so very long on this can now see “the light at the end of the tunnel.” Those who choose to believe us with an ounce of faith will move forward while others who choose otherwise will unfortunately continue to live as they currently do. It is that simple.

Paradigm shifts in medicine and disease are not easy things and we believe that our findings will be received with the usual skepticism. Fortunately, scientific truth will ultimately prevail!

What do I mean by this? First, I do believe that we will achieve a very good working model for this disease and that this is based upon very sound scientific research. Next, I do believe that we will have a unique identification test for this disease and that this is based upon the underlying disease process which will be fully identified. Most importantly, I believe that we will identify targeted and applicable clinical therapy for this disease. Our efforts into understanding the underlying disease pathology will pay important dividends as would be expected. As such, NCF staffers are looking forward to a very productive and telling year ahead!

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606