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From Spring 2011 Forum
One of the more often asked questions is if CFIDS/ME is contagious. The information guide from the National CFIDS Foundation states: "Without establishing a cause, the answer to this is unknown." Of course, that does not mean that others have not addressed this same question for decades. We know it is known to "run in families" yet we also know that science has proven it not to be an inherited disease (Kerr et al, Gow et al). Perhaps one of the most famous to delve into this question was Dr. Alexis Shelokov when he addressed the AACFS Conference in the late 1990's. Dr. Shelokov was the Director of Vaccine Research in the Government Services Division at the Salk Institute and revered for his wisdom. He told those at the conference that it had already been proven that CFIDS/ME was a contagious disease with the 1934 Los Angeles County outbreak. There were 198 cases reported and most were hospital personnel who had received a gamma globulin shot to prevent a measles outbreak. The number of "cases" indicates only those that were followed and studied.
Dr. Shelokov said the outbreaks, since the beginning one in California, have been labeled with various names all over the world. Some of the names were "Icelandic disease", "benign myalgic encephalimyelitis", Akureyri disease", "epidemic vegetative neuritis", and "atypical poliomyelitis". Of course, there were reports of outbreaks with striking similarities in the 1930's that went unrecorded in other areas of California as well as England, Australia, South Africa, Germany, Denmark, Greece, and many other states in the US. The common features were headaches, pain in the extremities, neck and back, paresis in muscle groups and a paucity of findings from laboratory tests. Each outbreak also had a spectrum of severity and the onset could be abrupt but most were insidious evolvement that often had remissions of short duration. The multitude of pain, vertigo, gastrointestinal disruption, nausea and vomiting, paresis, and weakness was often accompanied by depression and emotional instability that occured with vivid dreams, edema, menstrual disturbances and an instability of body temperatures.
The careful in-depth autopsies done on pets of CFIDS/ME patients in the 1990's by Thomas Glass, Ph.D. are more evidence of contagion as the dogs and cats that had died showed remarkable abnormalities that were indentical to their owner's disease. Despite all the science pointing in one direction, the very subject of infectiousness is one that seems to be averted among the specialists worldwide. One "specialist" who has written books on the disease and yet never addressed the topic of infectiousness in them is David Sheffield Bell, M.D. who had an outbreak in his rural area of upstate New York and who is, himself, a patient. Dr. Bell has lectured throughout the world on CFIDS/ME. In in mid-1990's, during a question and answer following one lecture, he was asked if he thought CFIDS was contagious and he laughed! He cited Dr. Shelokov's AACFS address. Years before, he had told another patient that he had never diagnosed a child with this illness without finding at least of one parent sick with the same disease. Of course, it's difficult to imagine any outbreak without some contagious element. However, until the cause is proven, the correct answer remains mere opinion based upon the science that has been proven to date.
Another often asked question of the NCF is whether to have an influenza vaccinnation ("flu shot"). An excellent review of that topic was published in 2009 entitled "Influenza in immosuppressed populations: a review of infection frequency, morbidity, mortality, and vaccine responses" (Lancet Infect Dis, 2009;9: 493-504, Kunisaki, Janoff). The article mainly mentioned patients with AIDS, bone-marrow transplants, etc. and never specifically named CFIDS/ME but it was really evaluating the susceptibility of patients who are immunosuppressed which definitively include those with CFIDS/ME. The article reported that "the U.S. Centers for Disease Control and Prevention (CDC) recommends yearly flu vaccination" but the authors admitted that many patients with immune system problems will have adverse affects. They concluded that randomised trials are necessary and welcomed. We have heard of none planned. Of course, anyone with a sensitivity to eggs should forego a flu shot. One medical advisor to the Canadian ME/FM Network advises patients to preceed cautiously with just 1/3 of an injection to discover if there are any adverse side effects.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606