ME/CFS:DIRE, Relapse Triggers in the Immunocompromised Patient

by Helen Borel,RN,MFA,PhD

                                                  Relapse Triggers
   About what triggers ME/CFS:DIRE relapses, I published in my 1992 book as follows:
"What is now known are many of the elemental factors that trigger relapses - stress, heat, exercise, routine activity, inadequate periods of relaxation, irregular meals, erratic sleeping habits, poor nutrition, festering bacterial infections (respiratory, teeth, for example), dryness and drying medications like antihistamines, inadequate hydration, allergic states, toxic encounters with people or events, environmental poisons, and even mental or creative work."

                    Relapse Prophylaxis in the Immune Compromised Patient
   "All of these triggers, few of which incapacitate otherwise healthy people, will be recognized by the astute clinician as pointing to an immune system disabling disease!

   "Once properly diagnosed, the health practitioner must immediately direct his or her counseling carefully to each of the ME/CFS:DIRE relapse triggers mentioned.  The patient's whole way of life will have to change and usually must go into genuine slow-motion gear."

                     The Symptoms and their Severity Represent Varying
                      Stages of a Progressive Immunocompromised State 
   "In the medical literature, patients' ME/CFS:DIRE symptoms are often referred to as 
'vague'.  The same was true for earlier epidemics of [this chronic, relapsing illness] in the 20th Century and in the 19th Century, when it was known by other vague judgmental labels such as 'neurasthenia'.

   "However,  the immunoetiologic symptoms of ME/CFS:DIRE are neither vague nor hard to pin down.  The diverse symptom presentations in different patients merely represent varying stages of a progressively worsening immunocompromised status.
A symptom spectrum, clearly denoting a pathologic progress in escalation when untreated, ranging from:
~ Early, mildly ill
~ to Several months, moderately ill
~ to a Few years to Many years, very ill
~ to Several years and Decades, severely ill and IMMUNOCRIPPLED  
That progression of relapsing deterioration is by no means 'vague'!

                            The Symptoms are SPECIFIC, not Vague!
   "The physician or nurse practitioner needs to view this dire symptom complex as
clear, not vague! And the healthcare professional should maintain a high index of suspicion for this epidemic disease in any patient who presents with exhaustion, frequent encephalitic headaches, feverishness of the head and neck with normal or low-grade elevations in body temperature, unexplained frequent recurrences of respiratory infections or 'burning' sensations in the chest - bronchial or esophageal." 

   "These symptoms all point to immunoviral reactivation and should be vigorously investigated and then treated with rest, nutrition...and high hydration to incapacitate
herpetic activity and to calm down the overstimulated immune system!"

   "As Nurse Practitioner M.G. Portwood reported (Nurse Practitioner, 1988), 'The patient feels terrible with the symptoms and wants to go to bed and rest.  The symptoms persist for months or years.'

   "This long-lasting 'terrible' feeling comes from the viral attacks and the viral and muscle pain, but especially from the pervasive nausea induced by an overactivated immune system spewing out excessive cytokines and endogenously chemotherapizing the patient!"

                  Epstein-Barr Chronicity Mirrors Late-Stage ME/CFS:DIRE
   Also in 1988, Registered Nurse P. Coulter reported in Community Health Nursing that more than one third of Chronic Epstein-Barr Virus (CEBV) disease patients surveyed were too ill to continue work or school.  [The eerily familiar symptoms] of "severe fatigue, malaise, sore throat, fevers, headaches, arthralgias, myalgias, tender and swollen lymph glands and neurologic symptoms," she said, "closely resemble classic infectious mononucleosis though 63% of those surveyed tested negative for mononucleosis" she pointed out. 

   And, when I wrote my book 25 years ago, I created a chart demonstrating the clear parallels in disease progression from early EBV infection/early ME/CFS:DIRE emergence
through chronicity in both. 

                              Obligations of Healthcare Professionals
   Thus, I continue to implore medical professionals to diagnose this illness long before the old Centers for Disease Control (CDC) criteria instruct.  Wait 6 months to "prove" it's really ME/CFS:DIRE?  No! Absolutely not!  Diagnose swiftly or you have a progressively worsening relapsing miserable disease in a once thriving patient, who soon has fewer and fewer periods of remission.  Ultimately, many of these relapses collapsing into one another because remissions have halted altogether.

   Anyway, what other illness do we wait 6 months to verify that the patient is suffering?

   By the way, symptomatic treatments, e.g., complete bedrest for a raging immune system and out-of-whack neuroendorphins, plus a high fluid intake and cooling treatments - like what we do for all other patients with encephalitic symptoms - who can they hurt?

   What CAN hurt?  Exercise!  This is a case where exercise can nearly kill the patient.
The illness says "rest," "be quiet," "don't move".  Then you'll at least not get worse, nor feel worse.  And the psych folks are pushing psychotherapy.  Hmm.  I'm a psychotherapist and I wouldn't dare treat a deranged immune system along with pathologic brain chemistry with psychotherapy.  That would be the nuttiest approach of all.

   Please!  Send in the Immunologists and Neurologists for appropriate approaches
to this disastrous pandemic disease.

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