Atypical Polio was first identified in 1934 by a US Public Health Service investigation of the California outbreak. The Surgeon General took interest because of the very high number of medical personnel that were affected at the Los Angeles county hospital. The hospital was dealing with a large number of Polio cases that summer. This pattern of conditions was similar to many of the outbreaks of this rare disease that occurred over many years worldwide. The increased frequency of these outbreaks during the 1950’s brought greater interest to our disease. Dr Melvin Ramsay and others further defined the illness, and Myalgic Encephalomyelitis became the recognized term for this neurologic infectious disease.
A number of distinguished doctors continued to study and report on ME outbreaks, including Wallis, Acheson, Richardson, Parish, Henderson, Shelokov, Dowsett, Ryll, Behan, and Hyde. Their writings have brought us a wealth of information about Myalgic Encephalomyelitis, and a continuous historical record of our disease over many decades. Perhaps most impressive among them, Dr Richardson could attest that the cases he saw in the year 2000 have the same disease as patients that he and Dr Ramsay encountered in the 1950's: the neurological disease defined as Myalgic Encephalomyelitis.
In 1984 the Outbreak at Lake Tahoe heralded the emergence of the massive modern explosion of epidemic Myalgic Encephalomyelitis (ME). The response from the American Centers for Disease Control (CDC) was to initiate a tragic and devastating pattern of denial, misinformation and confusion about this disease. The capstone of this deception came in 1988, with the use of a vague definition, the fabrication of a "new" illness, CFS, along with a disorienting barrage of propaganda; instead of taking advantage of the advice of the medical experts and pursuing an immediate investigation of the devastating and growing ME epidemic. This effort included encouraging journals to never again publish articles about Myalgic Encephalomyelitis.
The immediate effect of these actions was to render the medical community ignorant of the true nature of this disease, and unaware of the established record of previous outbreaks and reports. With this new CFS label, no one would realize that it referred to a disease similar to multiple sclerosis, chronic polio encephalitis or today's Post Polio. Clearly, in effect a program of deception.
The invention of the vague "CFS" construct was immediately followed by the enlistment of psychiatrists, and a frenzy of redefinitions and expansion of the disease criteria. These redefinitions created an opportunity to identify as patients people with vague symptoms and psychiatric disorders if that was opportune for the researcher and sponsors. The effect was to pollute the subject pool and thus mystify the research data with conflicting results. This inclusion of the psychiatric brigade, that postulated theories, promoted confusion and distracted the focus away from the origins and infections, was to the delight and benefit of the Defense department and an Insurance industry driven to limit their liabilities.
These major moves to confound and confuse, and to use the cover of the psychological theories, can be seen as part of a deliberate protracted plan. The expansion of the criteria would help provide ammunition to distort or waterdown the growing scientific data. Data, that demonstrate the neurological, immunological and circulatory abnormalities that confirm the Ramsay clinical criteria of Myalgic Encephalomyelitis. For the insurance industry, the promotion of the psychological theories would provide them with opportunities to limit disability coverage and avoid liability payouts, and thus enhance the Bottom Line.
By 1994, these tactics of deception progressed further with the overhaul of the "CFS" criteria to increase the focus on fatigue and stress. All the key features that defined the neurological disease, ME, became optional. Meanwhile the number of ME victims succumbing to lymphoma, cancer and organ failure continued to mount.
In a stepwise progression, the CDC program to obscure the ME epidemic and the identity of the disease became broader and more determined. As doctors and studies revealed more and more of the features (brain scans of damage to the brain stem similar to polio) and considerable organic abnormalities of ME, so too, the designs and policies from the CDC to confuse became more elaborate. By 2000, the proposal included the creation of a wide umbrella of "unexplained" illnesses. Thereby, a method to truly bury the scientific and programmatic focus on the epidemic of ME amid a vast multitude of non-infectious, non-neurologic and many psychological conditions. A category of illnesses was created where confusion would reign and for which there would be little public interest or concern, once shrouded in the cloak of psychological theories.
A cover-up of grand scale is being institutionalized, with all the trappings of official interest, appeasement, advisory boards and workgroups, with zero funding for the infectious causes. All of these developments would be consistent with a plan to not discover the cause.
A government investigation (GAO) found that many millions of dollars authorized by Congress for CFS was diverted and not used for CFS research. In effect, years of effort and opportunity and hope were lost. Many patients died during this time.
The patient community is aware of the CDC's long-standing culture of bias regarding our disease: the refusal to investigate the outbreaks, the diversion of funding, the deceitful design of laboratory studies, to the offensive and derogatory attitudes toward patients. This attitude includes Reeves having fun by ridiculing patients at public meetings. The CDC history and their record with the ME epidemic, and experiences of ME patients, strongly suggests that in order to help save lives the CDC must be prohibited from any further involvement with any decisions about our disease.
It is clear to us that there is a fundamental conflict between the interests of the large and growing patient community disabled by ME with their desire for progress, and the program of the CDC, which has been to delay and derail the search for the cause and cure. The trademark of the CDC strategy to cause confusion and to conceal the identity of this ME epidemic was the change of name to Chronic Fatigue Syndrome.
The myriad series of events, delays, mistakes and supposed bungling is so extensive that it fills an entire book, Hillary Johnson's Osler's Web, published in 1996. This work is essential reading for understanding of the medical, social, and political history of ME, as well as providing a context for the current events.
The Disaster of Policy
Without regard to the origins of the ME epidemic or why the health authorities have worked to conceal the epidemic from the public, the effects these policies on patients is devastating. As patients we know the brutality of both the medical and social disasters imposed by the CDC policies. They advise doctors not to do any of the numerous tests that demonstrate the immune, infectious, central nervous system and metabolic abnormalities that can support the diagnosis. Where does this leave the doctor? If there are no specific tests recommended, then this advice can encourage the doctor to be skeptical that the condition exists, certainly could not be serious. Where does this leave the patient? Without complete medical investigation and tests, the doctor is unable to proceed with treatments.
Untrained and unsure of the disease, induced by CDC policy the patient is not treated, leading to further deterioration. Severely disabled and without the validation of medical testing, the patient is confronted with an impossible task to obtain disability assistance. Many become homeless and fatalities increase.
These policies have fostered a pervasive negative attitude toward ME Patients, of which we are well aware. There exists the common experience at hospitals: the snickering by staff when they learn you have "CFS". Or worse, the woman who went to hospital with severe respiratory symptoms, she was not properly treated, given a bottle of syrup and sent home. She died a few hours later. She was not properly treated because she was known at the hospital to have CFS.
Advance Your Understanding
At the present time the medical community is attempting to understand the symptoms of ME, attempting to gain entry with their tools and methods and physiologic models, in order to explain the disease to their colleagues. This means that at the present time it is the patient community that has a far greater understanding of the realities of ME than the medical community. To us, ME is no mystery, it is a lived experience. This is a fundamental aspect of the current situation that must be accepted in order to gain a better understanding of this disease. Doctors will learn much about this disease by listening to patients. Progress in ME treatment and research begs for the guidance of clinical science. The patients' experiences are a valuable source of valid data. Government officials will also learn much about this disease by listening to patient representatives directly affected by this disease and by the actions of this committee.
Advance your understanding. Recognize the epidemic of Myalgic Encephalomyelitis. Protect the Public.
Why We Are Here
We are here today, because a widespread epidemic of Myalgic Encephalomyelitis has descended upon this country. In less than twenty years time there are now over 1 million victims in the US alone and millions more worldwide. We are here because the national health agencies have not addressed this danger to the public health nor sought to find the cause or remedies for the suffering. We are here to inform the public that the national health agency policies are subjecting patients to a systematic denial of medical services and are maintaining doctors all across this country ignorant about this disease. These health agency policies have ensured that the cause of this disease is not discovered. These policies impact the health of thousands already disabled by ME and continue to place everyone at risk.
A principal issue must not be overlooked: Why has ME, which has an historical relationship to Polio, exploded into a worldwide epidemic, and what is the inordinate fear of the DHHS to recognize this and discover its cause?
For the health and welfare of our families, neighbors and fellow citizens everywhere, we insist that these matters be taken up now. We will not wait any longer for improvements, they must proceed now. Action to control this Epidemic must begin Now. It is time for truth and honesty. We are here for progress. Now!
TCJRME The Committee for Justice and Recognition of Myalgic Encephalomyelitis