ME, CFS:DIRE: Insidiousness, Early Epidemics, Patient Suffering

by Helen Borel,RN,MFA,PhD

           Exhaustion, Not "Fatigue"
   According to Drs. Levine, Krueger and Straus, reporting in the Journal of Infectious
Diseases (Oct. 1989), "The postviral chronic fatigue syndrome (CFS) usually follows symptoms of acute viral infection and is characterized primarily by severe prolonged exhaustion."

           CDC Criteria Fall Far Short both 25 Years Ago and in 2018
   Dr. Zoler, in a 1988 article in Medical World News discussing the development of the Centers for Disease Control (CDC) "Diagnostic Criteria" for CFS:DIRE, reported that  "Although they credit the definition as a milestone in the effort to understand CFS, most researchers and patients see it as only a first approximation that will require considerable refinement."

   "'The working definition is not very specific; it has a lot of latitude,' said Dr. Seymour Grufferman, chairman of clinical epidemiology and preventive medicine at the University of Pittsburgh.  This looseness is by design.'"

   "'It's an evolving, descriptive process until the pathology is understood,' said Dr. James Jones, senior staff physician at Denver's National Jewish Center for Immunology and Respiratory Medicine."

          Historic ME, CFS:DIRE Epidemics in America
   A quarter century ago, CFS:DIRE support groups had been inundated daily with sufferers seeking information on this disease. As the numbers of victims grew, more and more patients sought information and attempted to get medical diagnosis and targeted medical care.  These efforts by patients were futile.  The ignorance of physicians and their stubborn assertions that these patients were mentally ill definitely slowed the progress in the science of the pathologic processes involved and halted, altogether any imaginative and even simple approaches to the symtomatic treatment of ME, CFS:DIRE sufferers.

     Medical Practitioners' Denials Persisted Despite American Epidemics
   In 1984 through 1985, there were CFS:DIRE epidemics in areas near
Yerrington, Nevada and Lake Tahoe.  An outbreak in Incline Village, Nevada was investigated at that time.  The victims' symptoms and signs included "chronic fatigue characterized by clinical and/or laboratory evidence of immune system deficiency or abnormality," said Nurse Practitioner M.G. Portwood in her Nurse Practioner article in 1988.  The data gathered, she said, indicated "a rising epidemic of CFS, which began in 1977, with isolated cases from 1953 to 1977."  And, in 1985 she reported that "numerous
cases of the fatigue syndrome" afflicted an upstate New York rural community.  And, it was also found, at the time, that CFS:DIRE afflicted as many as 21% of 500 unselected Boston patients.

          A Relapsing-Remitting Insidious Illness
   The illness has been described as "insidious," with wellness one day and illness for prolonged periods.  This is how it appears to the medical onlooker who is surprised by the confluence of apparent health, then severe downturns with incapacitation and bedriddenness.

   But, to the patient, after feeling well awhile, the relapses are sudden, life-disruptive and in no way subtle.  After months and years and often decades of such progressively worsening status, and frequent bedriddenness due to unrelenting nausea and the learned awareness that even the slightest activity worsens each current relapse, the patient begins to be emotionally affected and devastated, and hopeless of ever getting well and of ever being restored to his or her usual way of life.

   ME, CFS:DIRE is not so much insidious as its relapses are unpredictable.  Nobody knows when they'll strike, or how often, or accompanied by which barrage of distressing, herpetic and/or debilitating symptoms.

        The problem with this autoimmune-neurologic disease is that 
        it had the temerity to appear in the era of the acute emergence 
        of the epidemic Acquired Immune Deficiency Syndrome.
   And I believe, neither the Centers for Disease Control nor the National Institutes of Health in the United States could face the fact of yet another vicious epidemic disease.  How to "tame" it down and prevent public panic?  Give it a stupid, minimizing label
that no one could take seriously - Chronic Fatigue Syndrome.  Certainly not the medical profession.  And ridicule the patients suffering years and decades with it.  Doctors further forcing chronicity on these suffering patients by "believing" their own misinformation and psychiatrizing an obviously physiologic illness of the Central Nervous System afflicted by Immune System disruption disease.

  When will Physicians be Physicians and Offer SYMPTOMATIC TREATMENTS?
   Now, 25 years after I published my compendium on this subject, gathering research data from a wide variety of medical sources plus observing and recording my own symptoms
of 20 years' duration and noting what helped, what didn't help, what made the illness worse, what got me better...I am baffled by the snail-slow medical field doing nothing to
treat the symptoms of encephalitis, myelitis, hyper-endorphinization, activation of usually dormant virii, the whole shebang that sidelines, today, even more millions than there were with this awful illness in 1992 when I first published my findings.

          Now we have a Pandemic of ME, CFS:DIRE.  
          And the numbers of patients are growing.
   Scientist Guy/Gals: While you're doing your research on varied specific aspects of this
complex physiologic disorder, will you please pressure your bedside MD colleagues to
kindly develop a SYMPTOMATIC TREATMENT REGIMEN to help these patients survive and get well to whatever degree they can recapture after all these years of medical neglect?

   Reminders: We don't have to know the cause of a fever to treat the fever.  Since everyone now agrees, in this disease, there's something amiss with the Central Nervous System, let's say encephalitis/myelitis...uhh, is it too much to assume that a quieting down of this process by some simple physical treatment, like cooling the patient, might help?

   Geez, this is so nursing care/medical care simple.  I thought of it 25 years ago.  When will physicians catch up?

(c) 1992 to 2018 by Dr. Helen Borel. All rights reserved.