LOOKING BACK BUT MOVING FORWARD
by Alan Cocchetto, NCF Medical Director © 2008
Sometimes the day to day operations can be very frustrating here at the NCF. Why is that you may ask? Because of the need to frequently light a fire under the tails of researchers whom we have contacted for initial assessments, evaluations or other scientific activities associated with our research work. It often appears to take forever just to move one basic step ahead in our ongoing attempt to find answers for this disease. Sometimes it appears that we're trying to move a very big mountain. What adds to our dismay is knowing first hand the suffering that patients endure. Many of my personal friends have commented to me. "This disease feels like a death sentence." I have to agree. Most "well" people cannot begin to comprehend the level of impairment that these patients go through. For those patients who are either home-bound or bed-bound, medical research moves painfully slow. This is something that must change. I know all too well what a tall order this is. I have often wondered, "Are we put on this earth merely to survive day to day as best as we can?" We can do better and we must strive to do better. But how?
Some patients have commented "Hey, the NCF has come a long way! Look where you guys were, research wise, several years ago and look where you are today." Well, though this is certainly true, it doesn't play well for those who have joined our Memorial List. There is just so much lost time, so much pain and so much that's wrong with this disease that it's truly outrageous. Anyone who doesn't think so must have blinders on! And yes, there's a great deal of blame and fingerpointing that can be done but will doing so lead to the kind of change that is really required to alter the course of this disease thereby leading to vast improvements in the quality of life for all patients?
Because there are so many who are without a voice, let me voice my personal opinion here, especially given the fact that I've got an insiders view regarding the NCF's own research activity. Please allow me to not mince words.
As you may have realized from past articles in the Forum, the NCF has continually followed the medical science ad-nauseum. By doing so, this led us to fund important research projects in toxicology, virology and infectious disease. From that knowledge base, this has now led us into the world of oncology and hematology. How can this be? Simple...on the virology side, you have a virus that is very savvy. The Parainfluenza Virus-5 (PIV-5) 'SER' strain was first identified in swine and is now identified in humans. That's a zoonotic virus or one that has crossed over from animals to man. In other words, a foreign antigen. Since zoonotic viruses can be oncogenic, is it possible that this virus is oncogenic or cancer causing? You bet. Could this foreign antigen, that is perhaps cancer causing, be refractory to the human immune system? Yes again. Furthermore, could this be manifested as a direct alteration to the STAT1 protein in lymphocytes and could there be other important markers that are involved here as well? Yepper! The NCF has identified an oncogenic mechanism that appears to be at play in CFIDS/ME patients and our data is pointing to the potential development of an early hematologic malignancy as a result. Detection is not easy but what if you had an idea of what you were looking for? Could you find it then? That's where toxicology enters this picture. Sodium channel activation and malignant cell transformation play an important role in medical science. The NCF is continuing to make great strides in our understanding in this regard but there is more work to be done.
Ultimately, our intention will most likely be to put out a key position paper regarding what we know and what our research has been able to show. It will be carefully written with references to numerous papers by others in this field from around the world. Hopefully then you will begin to see how the framework has evolved and how seemingly independent work actually dovetails together in a way that serves to paint a new picture of what the disease entails. In reality, none of this should actually come as a surprise, only the manner in which it has come together.
Also, as I see it, one of the major obstacles in this disease has been the lack of involvement by certain medical specialties. For a disease that's frequently pitched by the medical community as "All in your head" should this really be shocking? Let's face it, those who are well known "experts" in this field, be they M.D.'s or Ph.D.'s or both, lack explicit training in oncology. Simple enough! When I think back to my reading of Osler's Web, sure physicians such as Bell, Cheney and Peterson made important clinical observations about their patients as any physician would who had seen a truckload of these patients. But let me ask you, are any of these physicians oncologists? Are any of them hematologists? Look at other well-known doctors in this field and you'll see that CFIDS/ME is unfortunately devoid of such training. What happens if these are just the specializations that we need for answers?
What I've learned on my own journey is that sometimes you don't have to move the whole mountain in order to accomplish your objectives. You just have to find a way around it to be successful! I think back to reading Osler's Web and, as an example, for some of the Tahoe patients to test positive for kappa-lambda light chains or for some of these patients to lack CD19 B-cells provides all of us with important initial clinical observations that shouldn't be ignored but should have, in fact, moved us in the direction of oncology! It makes you wonder why this hasn't occurred in this disease.
Let me ask all of you, "What would truly happen if our ultimate answers to this disease were to come from the oncology field?" Wouldn't there be appropriate treatments aimed at the eradication of the cancer? Wouldn't this disease then be defined differently and thus be seen in a very different light? What about patient affirmation and validation? Ask any cancer patient and they will tell you that they don't have a problem with either of those. They are treated with dignity and respect and quite frankly, that is what we, as CFIDS/ME patients, should expect from the medical community as well. As patients, wouldn't we be ENTITLED to appropriate health care and treatment that could have a dramatic impact on our quality of life? Imagine being able to go into remission! Wouldn't insurance companies finally have to "cough-it-up" financially to cover their subscribers for what they had paid into for such critical healthcare emergencies? Would the CDC or NIH have to concede their views on this disease? The list goes on and on....
This is where the NCF is going, like it or not. There is no sugar-coating this disease. You can either walk away or join us. The choice is really yours. The purpose of the NCF is not to unequivocally prove or convince everyone on this planet that we are on the "right" path. Our sole purpose is to illuminate certain scientific concepts, provide appropriate preliminary data via medical research and to solidify a "conceptual idea" that helps to highlight the efforts of global science in a manner to ultimately drive the community towards an appropriate medical solution. This is what we are attempting to do....following the scientific trail and uncovering the truths to affect important change in the field of medicine and most importantly, to bring effective treatments to those who desperately need it. Is there anything more sincere or noble?
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606