THE REAL PROBLEM WITH CFIDS AND THE NCF’S RESPONSE TO IT
By NCF Medical Committee (copyright 2015, written permission required for reprinting)
From Winter 2015-2016 Forum
In the September 2011 Los Angeles Times Op-Ed piece, written by Dr. Jay Levy and Dr. Daniel Peterson, the authors stated, “most of the biggest unsolved problems with chronic fatigue syndrome are scientific ones. We need to learn what causes the illness and we need to use that information to develop tests to diagnose, prevent and treat it.”
Well, the NCF has spent close to $3 million to bring patients closer to answering those very same questions asked by Drs. Levy and Peterson. Let us look closely at all of this. First of all, the relationship between ionizing radiation exposure and the subsequent development of chronic fatigue syndrome has been published in numerous medical journals from scientists at Chernobyl and from many others in Europe. For review, just take a peek at the NCF's radiation page that provides paper after paper documenting this scientific relationship. Also, it is important to understand that the NCF didn't create this paradigm. Other global scientists recognized and reported on this long before we came of the scene. Thus, whenever main stream CFIDS physicians poo-pooed the idea of CFIDS being caused by ionizing radiation exposure, they are bucking the very scientific proof that they themselves have long been asking for. The true irony is that these physicians won't embrace this possibility because they don't want to release their grip on their own egocentric based disease concepts.
Paradigms are not easy, we get it. However, the NCF is the only globally patient-based group that has put forth the effort, via funding the necessary research, to connect the dots that have brought us to the very same conclusion reached by other scientists half-way around the world.
We are where we are. With each new day, our researchers are moving us all towards definitive diagnostic testing along with initial therapeutic intervention, all of which is based on the undeniable fact that the connection between radiation exposure and CFIDS totally exists. This is our patient cohort. Now, do we know what percentage of our patient community will be represented by our cohort? We have an idea based on previous CFIDS research but time will tell whether or not our cohort represents 5% of the patient community or 95% of the patient community.
To Drs. Levy and Peterson, the NCF has put its muscle where it needs to be and we have demonstrated scientific proof of this concept. At this time, we are aware of eight publications that are in the pipeline based on our research and put forth by our research grant recipients. We are moving as fast as we can to not only get the necessary publications out in peer-reviewed journals but we are pursuing therapeutic interventions based on our disease model as we speak. 2016 should prove to be a most interesting year ahead!
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606