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Epidemic Denials

By Matthew Weil

There recently was a post forwarded to me from a chat group on the internet.  The discussion was on the confusion between the terms of epidemics, outbreaks and clusters.  For those long-term patients who are familiar with the history of CFIDS/ME and of the politics that has been ongoing, you can skip the rest of this article.  For the newly or recently diagnosed patients, I suggest you read Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.  Note the last word of the title. 

     The post forwarded to me was written by a patient who was told by a scientist from the Centers for Disease and Prevention (yes, the same federal agency that funds that other national CFIDS group) that they do not consider these clusters or outbreaks an "epidemic...because they don't know if CFS is a contagious disease."  The writer then pleaded, "Can we please talk about something important?" 

     I'll begin by noting that there is little else one can attribute to an outbreak where the people are unrelated, have had no relationships with one another and who have been studied carefully to find common things that may have brought on their illnesses.  And I want to also note that PIV-5 is a contagious disease.  But let's back up the entire discussion with some facts that that particular patient seemed to have conveniently ignored.

     The first carefully documented epidemic noted by a medical journal occurred in Los Angeles in 1934.  Doctors, nurses and patients got sick during a polio outbreak.  Yet, they didn't have polio.  They had muscle weakness (no, it wasn't dubbed "fatigue" then), involuntary muscle contractions, muscle twitching, myoclonic problems, sensory abnormalities and parathesias, vasomoter changes and some had muscle inflammation.  It was called benign poliomyelitis.  It is now called CFIDS (chronic fatigue immune dysfunction syndrome) or CFS (chronic fatigue syndrome) or ME (myalgic encephalomyelitis) or a few other names.  There are patients alive today who still suffer from this original outbreak.  They have been diagnosed, more recently, with ME.  Although the medical journal reported on the 200 that got sick at the Los Angeles County General Hospital, many more in that area got sick that same summer. A U.S. Health Bulletin described the chronic polio-like illness as "atypical polio." The same year, an epidemic was taking place in England at the Royal Free Hospital.  Those who are still living have been re-diagnosed with ME.

     Another famous epidemic occurred in Iceland in the late 1948 in Akureyri, Iceland that was very much like poliomyelitis.  More women than men got sick although the younger ones had a nearly equal sex ratio and high school aged children were vulnerable although those very young as well as those quite old were rare.  They looked at water, milk and foods and even sewerage but found nothing.  By 1955, this "Icelandic Disease" was looked at again.  Only 25% had recovered and over 65% had objective neurological signs.  It was yet another name for CFIDS/ME.   Only a few months after the Akureyri epidemic, another outbreak occurred in Adelaide and, of 800 patients admitted to the hospital, most were told they had "epidemic neuromyasthenia" which had symptoms indistinguishable from polio but with no microbiologic  evidence of polio.  This became known as the Royal Free Hospital disease.  Years later, the illness was said to be caused by hysteria yet most remain sick to this day and have CFIDS/ME. That same year, an epidemic of the same type was found in New York State and one in Cumbria.  Just a year later, in 1953, an quite intense outbreak happened in Washington, DC in a psychiatric hospital.  Of the 200 personnel in the hospital, 50 got sick and the majority were the nursing students.

     In the 1970's, another outbreak of "epidemic neuromyasthenia" happened at a children's hospital in England.  A number of nurses (145) along with others were affected. In 1975, "a severe epidemic of communicable, apparent viral disease at the Mercy San Juan Hospital in Carmichael, a suburb of Sacramento, California," writes Erich D. Ryll, M.D.  "...fearing that some people might die, I asked that the CDC become involved...the disease was apparently due to an unknown agent, presumably a virus...I have followed these patients on a daily basis since 1975."  Just a year earlier, there wqas another outbreak in London and, this time, the conclusion was that it could not be hysteria.

     But let's skip to more recent the 1980's, there was an epidemic of what is now known as CFIDS/ME that occurred in Incline Village, Nevada.  Hundreds were sick including nearby teachers in an elementary school.  At about the same time, another epidemic was going on in Lyndonville, New York.  Now, Lyndonville is a tiny, rural town that borders on the Lake Ontario.  This was known as an epidemic of children but it also hit adults and even farm animals!  From these two epidemics, we were left with specialists who saw and treated those affected and some had their own families and staff members infected.  Children, adults, even farm animals an entire country apart getting sick...can anyone suggest anything but an epidemic?  But the CDC was called in to see the Nevada "outbreak" and found nothing that interested them but the fine skiing to be had.  A state health agency was called in to see the New York outbreak and barely stayed long enough to grab a pizza. A careful study of this outbreak was presented to the  Society for Epidemiologic Research in 1988.   David S. Bell, M.D., wrote in The Doctor's Guide to Chronic Fatigue Syndrome, "I believe that many outbreaks like that in Lyndonville have occurred across the country but have gone unrecognized."  Dr. Peter Behan, a neurologist and CFIDS/ME specialist, wrote, "The illness occurs both sporadically and in epidemics, with cases being reported from all over the US, Europe, Australia and South is stressed that the syndrome is an epidemic disease with periodic outbreaks of epidemic  prevalence" (Critical Reviews in Neurobiology, 1988, volume 4). From the 1930's to the present time, there were outbreaks in Switzerland, Denmark, Germany, Sierra Leone, Greece, Lebanon, Ireland, New Zealand and many in the US and England.

     After these well publicized epidemics in the 1980's occurred, others happened but word had already spread and the way a physician was treated if they reported it  and it had been in the media.  The last one recorded was in California at a high school in 1990.  There were outbreaks in elementary schools in several states, in communities from California to Maine and even one in a convent in Rhode Island.  There have been epidemics in summer camps and in boarding schools. 

     My own daughter was diagnosed by a famous pediatrician who specialized in CFIDS/ME years after I had been diagnosed.  He told me, "It would be unusual for me to diagnose a child without having at least one parent with the illness."  With no history of molestation, does this say anything other than contagion?

      Over 100,000 people in the U.S. have CFIDS/ME.  Only about 240 people in the world have found themselves infected with avian influenza H5N1 and most of them worked closely with sick birds.  If it finds a way to jump species more easily, we may have another pandemic or epidemic on our hands, but for now no real precautions are necessary.  Yet the CDC has a lot to say about an impending "bird flu epidemic" that they want to try to stave off while they ignore an epidemic that is already among us and has been for years.

     What else is the CDC hiding?  What other lies are patients swallowing today? How can the CDC brag about their educational campaign when they are not being truthful?  How long must we wait for the truth from them? 

Matthew Weil lives in the state of Washington.

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