By Gail Kansky
Does anyone else find it strange that, ever since the NCF announced the cause of CFIDS/ME a few years ago, not one other charity nor any one “specialist” in the world has ever addressed what we continue to be so outspoken about? Did any other charity for “CFS” or “ME” say one word when we funded Dr. Ciaran Morrison at Galway’s National University of Ireland’s Center for Centrosome Biology before we even had the final results from Wayne State University’s Dr. Henry Heng that proved key chromosomal abnormalities in CFIDS/ME? Is it even possible nobody knew how few things could possibly cause such severe chromosomal abnormalities? Did anyone find it strange that, well before our initial announcement of the cause of CFIDS/ME, just to be sure we were correct, we had our cohort of PWC/MEs tested for radiation by the same laboratory used by our federal government and had the results analyzed by the world-reknowned radiation expert from McMaster University, Dr. Carmel Mothersill? Our cohort, made up of patients of both sexes and all ages along with different severity, had all proven positive to our announced cause!
Recently, Dr. Anthony L. Komaroff said, “We do not know the cause of CFS. We have not yet been clever enough to figure it out.” I, for one, don’t believe he is telling the whole truth and nothing but the truth nor do I believe that the majority of “specialists” and researchers around the world don’t already know that the cause is, indeed, ionizing radiation. With research they all, very carefully, merely graze the outlines of the illness and more than a few continue to announce “new discoveries” that were actually discovered many years ago. However, it is true that ionizing radiation is the cause of only a subgroup of “CFS”. Indeed, that subgroup is why we call this illness CFIDS --- Chronic Fatigue and Immune Dysfunction Syndrome. We remember that name was used at the suggestion of Dr. Seymour Grufferman when the government announced the committee-selected name of Chronic Fatigue Syndrome and, indeed, one member of that committee was the one who, today, suggests that nobody has been “clever enough” to figure it out. The “fatigue” has already been found by our own NIH’s National Cancer Institute years after we had funded research that, indeed, had results that pointed in the same direction as when the NCI found the fatigue, in our subset of “CFS”, to be cancer-related fatigue. CFIDS is, indeed, the exact same subset that is also called myalgic encephalomyelitis and that, too, was proven years ago although the majority of experts fail to admit that indisputable and fully replicated scientific fact by Dr. Yoshitsugi Hokama. The immune dysfunction separates this illness from the Oxford Criteria that merely asks for patients to have fatigue for six months. Using the Oxford Criteria, of course, allows patients with something so minor, when compared to CFIDS which, once that cause is eliminated, allows one to “recover”. Even the CDC’s Fukuda definition is vague and allows others to be diagnosed that do not have the same disease as those with CFIDS/ME.
Our own NIH has a workshop ongoing presently to review “CFS” called the Pathways to Prevention (P2P). None of the members on that panel are experts but they are relying on a contract that pays the Oregon Health and Science University to give them all background information. Does that university understand that this illness we call CFIDS/ME includes the slow but ongoing depletion of Stat-1? Do they know the fatigue is cancer-related fatigue? Do they know that one particular subset has been proven to be autoimmune with thousands tested around the world? They are looking for a way to diagnose patients yet, if they use so many definitions, how can that be possible? If some patients fit the Fukuda Definition (which, in fact, is misspelled in P2P’s own table of definitions) or the Canadian or International or Ramsey or Oxford or any other definition, they cannot exclude patients who have a somatic illness or any other problem and they will merely group all patients with different problems and diseases together. What does that accomplish? Well, it would certainly be categorized as “bad science” just as thinking that post-exertional malaise (PEM) or cognitive problems are the hallmark of an illness when both symptoms are found in many other autoimmune illnesses instead of understanding that the immune dysfunction in CFIDS is slowly leading toward a particular type of cancer.
Our efforts are to fund science that will lead us to an actual treatment for those patients that are in the subset of “CFS” that is known as CFIDS or ME. We already know there cannot be a “cure” but there is no reason to believe one cannot block the damage being done to us on a continuing basis with the correct research funded to find that elusive information. Knowing what can block the damage is not curative but, if taken on a regular basis, will allow the immune system to return to what it is meant to be doing when a person has the fortune of having good health. We’re determined to get there and, hopefully, that day will come much sooner than we think. We are so very grateful to all those who continue to make this possible.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606