Wednesday, February 21, 2018

ME/CFS:DIRE PANDEMIC, Pandemonium Outcries for Research and Therapeutics

by Helen Borel,RN,MFA,PhD

   In 1992, I reported that, according to Landay et al. in a 1991 issue of Lancet (1)"An increasing frequency of CFS:DIRE is occurring in Australia, the United States, Britain and around the world."

   And that  a 1989 Summary of CFS:DIRE by Komaroff and Goldenberg in the Journal of
Rheumatology (2) concluded that "Chronic fatigue syndrome (CFS) is characterized by
chronic, debilitating fatigue lasting greater than 6 months.  Frequent chronic and recurrent findings include fever, pharyngitis, myalgias, adenopathy, arthralgias, difficulties in cognition and disorders of mood.  In the majority of patients, the illness starts suddenly with an acute, 'flu-like' illness."

                         Laboratory Abnormalities Seen with Some Frequency
   Although not observed in all CFS:DIRE patients, these laboratory anomalies occur often
enough in such sufferers, they reported: "...lymphocytosis, atypical lymphocytosis, monocytosis, eleva-tion of hepatocellular enzymes, low levels of antinuclear antibodies, varying levels of antithyroid antibodies, partial hypergammaglobulinemia, elevated CD4:CD8 ratio, decreased cytolytic activity of natural killer cells, and low levels of immune complexes." (2)

   Here it is important to note that autoimmune phenomena, like the presence of antinuclear antibodies and hypergammaglobulinemia, are also characteristic of lupus.
                   
                The Herpesviruses Implicated in Clinical and Serologic Studies
   According to Komoroff and Goldenberg (2), clinical and serologic studies "suggest an association of CFS with all of the human herpesviruses, particularly Epstein-Barr virus (EBV) and the recently discovered...human herpesvirus 6 [though] neither
EBV nor HHV-6 has yet been shown to play a causal role in this illness." 

   After studying 350 CFS:DIRE patients over a 3-year period, these clinician-researchers (2) reported: "All of them have been ill for at least 6 months.  The main symptom is fatigue.  The typical patient has been ill for 2.9 years (as of January, 1988); some have been ill for much longer.  About 25% describe themselves as regularly bedridden or shut-in, unable to work.  About one third can work only part-time.  Before they became ill, the patients perceived that they typically were more energetic than most of their friends."

   They further reported that in about 85% of the patients, "The chronic illness has followed the sudden onset of an acute 'flu-like' illness characterized by fever, pharyngitis, adenopathy, myalgias and related symptoms.  Unlike the usual 'flu,' the patients state they have never fully recovered from this illness....20-50% experience chronic postexertional malaise and recurrent night sweats."

                       High Prevalence of Allergy in ME/CFS:DIRE Patients 
   Allergy is so prevalent in CFS:DIRE that these investigators (2) emphasized: "On medical history, the only clearly striking finding is a high frequency of atopic or allergic illness (in about  50 to 70%)."

                      Low Basal Body Temperature in Many of these Patients
   On clinical examination, Komoroff and Goldenberg (2) found that "In 15-50% of patients there are fevers, [in others] unusually low basal body temperature (below 97 degrees Fahrenheit); posterior cervical adenopathy and hepatosplenomegaly, which usually disappears after the first 3 months of illness."

       Source of the Whole Array of Symptoms - Immune System Hyperactivation
   About immune system hyperactivation, these researchers (2) argue that "There is growing speculation that much of the morbidity of CFS - especially the fatigue, fevers, adenopathy, cognitive disorders and mood disorders - comes from a subtle, generalized chronic activation of the immune system, particularly the elaboration of several cytokines.  Some preliminary data support this hypothesis."

                                         On Possible Viral Etiologies 
   Furthermore, Komoroff and Goldenberg (2), on viral etiologies, claimed that "the role of viruses remains uncertain.  Most observers currently believe that no single infectious agent is likely to be the cause of CFS."

  
                                    The Pathogenic Role of Dormant Virii
   What they do not mention is that, in an immunocompromised state, dormant viruses inhabiting cells without causing disease in healthy people, like the herpesvirus EBV, become reactivated and produce recurrent viral attacks just like those experienced by CFS:DIRE patients during their relapses. 

                                    Vital Questions and Theories to Consider 
   To help delineate CFS:DIRE etiology(ies), vital questions and theories to consider include those posed by Komoroff and Goldenberg (2), stalwart researchers into this puzzling phenomenon, who've shown pioneering dedication to the quest for the cause, description, and ultimate cure of this illnessAccording to them, "It has been shown that chronic persistent viruses may often be reactivated during this illness.  Is this merely an epiphenomenon?  Or, once reactivated, do these viruses then go on to produce  many of the symptoms of the disease?  And what reactivates these endogenous viruses?  If it is some defect in immunologic containment, what causes that defect?  Could it be stress?  Could it be some genetically determined property of the patient's immunity?  Could it be environmental toxins?  Could it be infection with other lymphotropic viruses?  In our view, it is reasonable to speculate that all of these factors are capable of triggering CFS, with different factors playing a role in different individuals."

   Since that report (2), more and more evidence had emerged by the early 1990s that pinpointed immune overactivation as the common denominator defect in patients with CFS:DIRE. 

                              Does Stress Occur in Epidemic Clusters?
   If there were such a thing as "epidemic stress," how do diverse individuals in a community with diverse lifestyles and work responsibilities suddenly become victims of the same stressor or the same levels of stress?  No!  Stress does not cause CFS:DIRE.  Stress only becomes a factor AFTER the immune system has been injured in some way, either by a virulent infection, a malignant process, or a poison!  Once damaged, the immune system is incompetent to handle any level of stress, even the most ordinary or the most miniscule.  Stress, in CFS:DIRE, is therefore of concern because, present in any quantity at all, it triggers or exacerbates CFS:DIRE relapses!
       
                             My Conclusions about Causes and Therapies
   I agree with Drs. Komoroff and Goldenberg (2) that it is reasonable to assume that all the factors they  mention may be implicated in CFS:DIRE; however, most come into play only after the immune system has decompensated.  The only viable causative suspects they mention, in my view, are the probability of lymphotropic viral infection and/or poisoning by environmental contamination of large groups of people, in our food and water, in the air we breathe, and in our household products.

   HIV, the purported cause of AIDS, is a lymphotropic virus which attacks T-lymphocytes, thereby disabling the immune system.  It is possible that a similar virulent viral pathogen, transmitted casually unlike the case with AIDS, is wreaking pandemic immune havoc.  Human herpesvirus 6 (HHV-6), just such a lymphotropic virus, is currently (that is, in 1992) a strong etiologic suspect as either cause or co-causative of 
CFS:DIRE aka ME.

                                  Empiric Treatment of Symptoms is Urgent
                                 While We Await Definitive Causes and Tests
   Again, as with all my previous 12 "ME RESEARCH CENTRAL" blogs, I strongly urge the development of a Symptomatic Treatment Regimen to limit and minimize symptoms, to decrease occurrences of relapses, to give ME/CFS:DIRE patients some kind of normalcy while the world awaits the delineation of a single etiology or a variation of etiologies.  There's zero reason to withhold sensible empiric therapies to attack, at least, some of the burdensome symptoms.  Especially the febrile occurrences (we can assume)
that are attacking the encephalon and the myelin sheath.  

   Please bear in mind that low or normal body temperature does not give the true picture of what's happening in the brain.  The "itis" of encephalitis and myelitis means "inflammation".  Any physicians know of any inflammatory process that isn't accompanied by some temperature elevation?  Therefore, since we can't stick a thermometer into the brain or spinal cord, let's assume they're HOT during ME/CFS:DIRE relapses and let's increase oral fluid intake substantially.  And let's instruct patients to wear an ice collar, put an icebag on the forehead, avoid heat of any kind, keep very cool during relapses.  And, at the first sign of a relapse - malaise, nausea, need to lie down - institute these cold and fluid intake treatments STATEmpirically.  Don't force patients to wait until research conclusions arrive.  We've all waited decades upon decades for the science.  Now let's take care of the patients who are suffering.
Now!

References
1. A.L. Landay; C. Jessop, E.T. Linette and J.A. Levy: Lancet 338(8759):707-712 (Sept 21) 1991.
2. A.L. Komoroff and D. Goldenberg J. Rheumatology (suppl 19) 16:23-27, 1989.

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

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