Tuesday, January 30, 2018

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.

Saturday, January 27, 2018

ME, RESERVOIR OF VULNERABILITY: High % of Medical Professionals Suffer CFS:DIRE

by Helen Borel,RN,MFA,PhD

   There was a time that demons caused mental illness and
when blood-letting was a cure-all.  In America and around the world, tragically, "mental illness" itself is the medical wastebasket used as an easy excuse for lazy, unempathic physicians to conjure as the demon that produces the terrible symptoms of ME, CFS:DIRE.

A Disproportionately High Number are RNs and MDs
   Nothing could be further from the truth.  Because, ironically, a disproportionately high number of ME, CFS:DIRE sufferers are doctors and nurses. This fact alone should focus certain research efforts on the specifics that would tend to produce such healthcare population morbidity!  The answer to this question may help pinpoint a cause or isolate and identify some unique public health or hospital-based reservoir of vulnerability.

    Unusually Long and Irregular Working Hours
   What comes immediately to mind in this regard, from personal experience, is that the working hours of health professionals are erratic, with varied shifts often with no days off, with rushed meals.  Work is really chronic overwork.  

    Registered Nurses Appear the Most Vulnerable 
   And, of the most chronically overworked, the one most
highly stressed medical professional - as hospital administrators, pushing for the tight bottom line, demand the most work from the fewest professionals for the lowest pay - and in my day, with no health insurance or retirement plans offered whatsoever. No benefits!  This most disadvantaged healthcare provider is the Registered Professional Nurse.  All work at all hours.  Poor pay.  And no help or hope when sick oneself.  

   Maybe these days RNs are better paid.  And maybe these days they have health insurance benefits.  However, it's unlikely that excessive patient-care loads and erratic, rotating shifts have disappeared from the hospital arena. 

      ?Karma Payback to MDs Dismissive of ME 
   Poetic justic occurs when some of the arrogant, dismissive doctors, or their close relatives or friends, themselves develop ME, CFS:DIRE. They'll be the first to note that their febrile, gastrointestinal, cerebral, and muskuloskeletal relapses are anything but intrapsychic. Not to mention, the unremittingly frequent bouts of bronchial and/or sinus infections, sometimes by opportunistic bacteria (certainly not a sign of mental illness), which they will be hard put to explain, especially if they don't smoke and take reasonable care of themselves.  

   Finally, once struck down by this immune-dysfunction- based illness, they will cease telling their ME, CFS:DIRE patients (if these MDs feel well enough and have long enough remissions to still be able to practice medicine) to get out and exercise.  Because they, too, will soon learn
the wisdom this autoimmune, CNS-incapacitating illness 
teaches its victims: 

            EXERTION, EVEN MILD, USUALLY 
         TRIGGERS RELAPSES OF CYTOKINE-
      INDUCED VIRAL ENCEPHALOMYELITIS  
                aka Chronic Fatigue Syndrome aka 
      Chronic Fatigue Immune Dysfunction Syndrome 
           aka Low Natural Killer Cell Disease aka 
                   Myalgic Encephalomyelitis aka 
Debilitating Immunopathic Relapsing Encephalomyelitis

   Physicians Sick with ME, CFS:DIRE will learn to 
titrate their activities according to the logic of their profound exhaustion illness - immune dysfunction + viral relapse + encephalitis.  Not according to some arbitrary fantasy by psychiatrists looking for a whole new category and cache of patients.  Not according to some medical establishment delusion that the estimated 24,000,000 
ME, CFS:DIRE worldwide victims are "depressives" or "hypochondriacs".  Not according to some conventional nonsense that the suffering of relapsing viral encephalitis, myelitis, and a crippled immune system triggering excess neuroendorphins to flood the body and brain, are an incidental footnote to their health record.

   As these now afflicted MDs will see, ME, CFS:DIRE requires serious medical attention, when they are forced to stay abed with non-migrainous nausea, photophobia, tachypnea, tachycardia, mucosal burning in bronchi, esophagus and sinuses due to flare-ups; the same viral-
immune process also inflicting encephalic misery.

   When their lives are sharply curtailed, or they're stopped dead in their tracks, despite goals, desires, appointments, loved activities - totally uncharacteristic of depression - they too may finally research and develop sensible health regimens to assist their fellow patients toward recovery.

   In the meantime, we wait. Unhelped by medical doctors.
  
(c) Copyright 1992 to 2018 by Dr. Helen Borel. 
                     All rights reserved. 


      

       
    

 

Friday, January 26, 2018

ME,CFS:DIRE, THE RADIATION SICKNESS CONNECTION

by Helen Borel,RN,MFA,PhD

   There are several possible etiologies for ME, CFS:DIRE. Which or how many of these trigger this pathologic process have still not been definitively identified. Therefore, as I reported in my 1992
compendium on this subject, Living With and Recovering From CHRONIC FATIGUE SYNDROME:
Debilitating Immunopathic Relapsing Encephalomyelitis, consider some similarities in the sufferings
of these patients to some of what occurs in Radiation Sickness.  The items in bold face point to
signs and symptoms similarly occurring in ME, CFS:DIRE.

   Radiation Sickness from Environmental Exposure or Radiation Therapy
   Radiation Sickness signs and symptoms include:
   ~ Nausea
   ~ Severe Vomitting
   ~ Anxiety
   ~ Disorientation
   ~ and, within hours of excess acute exposure, unconsciousness and death due to
      Central Nervous System Damage and Cerebral Edema

   The (above) fulminating course is referred to as The Central Nervous System Syndrome
During their ME, CFS:DIRE relapses, patients are experiencing a form of "CNS SYNDROME".

   Radiation Sickness at Lower Levels of Exposure may initially produce transient nausea 
and occasionally vomiting which rapidly abates followed by a 2-to-3-week period of relative
well-being.

   Unfortunately, after this calm period damage to the bone marrow and the entire immune
system begin to show their effects by repeated infections, which can be fatal without antibiotics
and petechiae (pinpoint bleeding spots visible on the skin). Treatment may work using bone marrow
transplantation or isolation in a sterile environment, until the bone marrow recovers and immune
function can be restored.

   Radiation Therapy can also produce unpleasant or hazardous effects including fatigue, 
nausea and vomiting, and loss of hair.  Reddening and blistering of the skin occurs rarely and can 
be alleviated with corticosteroids. 

   Note that these effects of radiation treatments are, by and large, responses to being poisoned
and immunocompromised thereby.  

   A similar vulnerability exists in ME, CFS:DIRE patients, who may initially be poisoned exogenously, then, paradoxically, are recurrently poisoned endogenously by their own
immune system cytokines during relapses

   The Radiation Sickness Connection is but one of many pathologic processes the ME, CFS:DIRE community can point to which, in some aspects, mirrors its patients' chronic, relapsing sufferings. Future blogs will report on other disease entities that share common signs and/or symptoms with ME, CFS:DIRE as well.

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

Wednesday, January 24, 2018

ME, Opioid-Antagonist NALOXONE-REVERSIBLE MONOCYTE DYSFUNCTION in CFS:DIRE

by Helen Borel,RN,MFA,PhD

   According to Prieto et al. (1989), reporting in the Scandinavian Journal of Immunology, who studied 35 consecutive patients with CFS:DIRE, 85% showed monocyte dysfunction "characterized by marked reduction in the number of monocytes displaying immuno-reactive cytoskeletal vimentin filaments, a low phagocytosis index, and reduced expression of HLA-DR antigens." This finding by Prieto and colleagues, way back in the late 1980s, demonstrates the crippling of these vital phagocytotic cells in patients suffering ME, CFS:DIRE.  Why?  Read about what normal monocytes do in healthy individuals, why and how sick monocytes harm patients with ME, CFS:DIRE.

               MONOCYTE: Part of the Immune Sytstem's 
               Leukocytes (aka White Blood cells, key cells 
               that help fight infections and allergies, but which 
               over-proliferate in the case of leukemia and other
               disease states), a monocyte is a phagocyte which 
               is an "eater" of bacteria, a destroyer of bacteria. 
               A monocyte is a large phagocytotic leukocyte 
               with basophilic cytoplasm containing faint eosino-
               philic granulations.    

               MONOCYTES travel in the blood for 6 to 9 days 
               having a critical role in immune functions.  To 
               understand their vital role in ME, CFS:DIRE, I refer 
               you to that important Prieto and collegues' research 
               paper I discussed in my 1992 book Living With and         
            Recovering From CHRONIC FATIGUE SYNDROME:
          Debilitating Immunopathic Relapsing Encephalomyelitis       

              HLA-DR = Human Leucocyte Antigen-D Related 
              (the discovery of which has led to greater success 
               and longevity in organ transplantation)  

   Specifically, in this ME, CFS:DIRE disease, one's monocytes are dysfunctional, overwrought, over-activating excess endorphins, the body's own "morphines" (endogenous opioids).  Not surprisingly,
then, these patients' monocytes responded positively, in that study, to the widely-known narcotic antagonist naloxone. 

   The Role of  Neurochemicals in the Modulation 
   of Immunochemicals and Vice Versa
   As that Prieto et al. research showed, in the presence of naloxone, those dysfunctionally low readings changed for the better, and I quote, "These values increased dramatically after incubation of the patients' monocytes with the opioid antagonist naloxone....These findings suggest that an increased opioid activity acting through a classical receptor mechanism is active on monocytes from a high proportion of patients with CFS and that this represents a novel example of immunomodulation by opioid peptides in human disease. We suggest endogenous opioids are involved in the pathogenesis of chronic fatigue syndrome." These medical scientists' assertion also proves my definition of ME, CFS:DIRE
as a disease due to ENDOGENOUS CHEMOTHERAPY, the body giving itself almost nonstop "killer treatments" of cytokines.  See my blog "ME, ENDOGENOUS CHEMOTHERAPY DISEASE".

   "To summarize," firmly state Prieto and colleagues, "a naloxone-reversible monocyte dysfunction has been found in a high percentage of patients with CFS, illustrating the immunomodulating role of opioid peptides in human disease.  Our results indicate that the study of the percentage of VF-positive monocytes in the presence and absence of naloxone might prove to be a useful clinical test in the investigation of patients with CFS and might contribute to a better understanding of the pathophysiology of this process."

    Both a Diagnostic Test AND a Specific Treatment
   As I proposed, in my book published a quarter century ago, the 
results of this study made me conclude, "Therefore, treatment with naloxone, the narcotic-antagonist usually used to reverse narcotic overdoses, may be one avenue of treatment for CFS:DIRE patients." 

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

 

Monday, January 22, 2018

ME: DIRE, DEBILITATING IMMUNOPATHIC RELAPSING ENCEPHALOMYELITIS

by Helen Borel,RN,MFA,PhD

   After considerable research of the scientific literature, plus two decades of observing my own relapsing ME pathologies, I finally fully grasped the actual factual nature of this truly DIRE illness.  Variously
known as Chronic Fatigue Syndrome (CFS) in the U.S., Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) in the U.S., Low Natural Killer Cell Disease in Japan, and Myalgic Encephalomyelitis (ME) in the U.K., Australia, Canada, Sweden, the Netherlands, Germany, other European countries, and in even more countries worldwide, confusing patients and doctors alike, I decided on an
even more specific descriptive name for this disease:

   Debilitating Immunopathic Relapsing Encephalomyelitis.

   "Myalgias" may be present in some CFS/ME/DIRE patients, but so are many, many other signs and symptoms.  I chose "Debilitating Immunopathic Relapsing Encephalomyelitis" because this group of words covers the panoramic gamut of what this disease's pathologic process is doing to the patient. And, it is truly DIRE:
  ~ Incapacitating Debility
  ~ Immune pathology
  ~ Occuring in Relapses 
  ~ Inflaming the Encephalon and Myelin Sheath
     ...And the acronym DIRE describes the disease as severe!

    Dormant Virii Capture Vulnerable Immune Cells
    We're not fully certain, yet, but it is presumed that one or more dormant virii - awakened when the immune system is weakened
by some other infection, toxic assault, as yet unknown etiologic event, or a virulent combination thereof - are participants in the dire disease process widely known as ME and CFS.  Within the immune cells, they replicate using the cell's own deoxyribonucleic acid (DNA), thereby destroying the cell and its protective capabilities.

   Thus disabling one's immune cells drastically alters the biochemistry of one's immune system and its interconnections vital to other body functions.  Its subtle exactness of action and its immune chemicals, meant to attack invaders, are thereby crippled.  Immune biochemistry now goes amok because it's system's cells are now virtual viral factories, overreacting with too much of certain toxins and too little of its balancing suppressants. 

   The Brain and Spinal Cord Awash in Cytotoxins (killer cells)
   With normal immune biochemical pathways severely disrupted this way, you can see how this process explains the flooding of the body, especially the brain and spinal cord, with excessive levels of certain neurochemicals and cytotoxic immune chemicals due to the ruptured immune cells' panic reaction.

   In other words, when a vulnerable immune system is attacked by normally dormant virii, it presses the red alert panic button.  The Central Nervous System - your brain and spinal cord - gets this twisted, pathologic message and responds with its own matching bizarre biochemical overreactions.

   The result is that vital functions are ultra-suppressed that shouldn't be, that other vital functions are hyper-stimulated that should not be.
The outcome is the disease you are, or your patient is, suffering.

    Brain and Spine on Fire!!!
   The goals must be to treat, symptomatically, the inflamed brain and
myelin sheath

   Physicians, please remember that oral and rectal temperatures, usually in the normal range even during horrendous DIRE relapses,
DO NOT REFLECT the febrile climate of the Central Nervous System during ME, CFS, DIRE relapses. Thus, do resolve to treat
the presumed encephalitis brain fevers that are occurring during
relapses, that "hotheadedness" that probably is the initial event occurring as a DIRE remission transforms into a DIRE relapse.

   Sadly, right now, some patients experience few, if any, remissions.  They are living lives of one continuous, neverending relapse. Thus,
making patients and doctors oblivious to the fact that this is a relapsing/remission disease that should be diagnosed and aggressively treated SYMTOMATICALLY as early as possible to prevent this dire state of chronicity.

  ~ We must minimize the severity of each relapse 
  ~ We must aim toward the elimination of relapses altogether
  ~ Or, at least, we must head toward the patient suffering fewer
     and fewer relapses with increasingly longer and longer periods
     of remission.

   Until, one day, the ME, CFS:DIRE patient can live a normal life
again.
  
(c) Copyright 1992 to 2018 by Dr. Helen Borel. All rights reserved.

 

 

Thursday, January 18, 2018

ME, ENDOGENOUS CHEMOTHERAPY DISEASE

by Helen Borel,RN,MFA,PhD

The below are compressed ideas meant to convey, in brief, an overview of what I discovered
and am certain describes the condition, erroneously-named "Chronic Fatigue Syndrome".

ETIOLOGIC CULPRITS-> BACTERIAL, VIRAL,TOXIC<-either or some in-tandem
The presumed etiologies for CFS/ME patients’ immune-compromised states – called variously
Low Natural Killer Cell Disease (Japan), Myalgic Encephalomyelitis (UK) and Chronic Fatigue Syndrome (US)<-the worst, most minimizing name of all – have not changed since 15-, 20-,
30-, 40-years ago. And the research findings from all those eras are clear and have not changed!

Whatever the physiologic assault (bacterial, viral, toxic), immune elements meant to attack and
rid the body of these are now – in the CFS/ME state – on overdrive. This, despite the fact that
the offending virus, bacterium, toxin – whichever – are long gone from the patient.

CYTOKINE OVERKILL->LEADS TO ENCEPHALITIS AND MYELITIS
You are now dealing with an “activated immune system” (more easily grasped by lay persons as
“an OVERACTIVATED Immune system”). A system which is supposed to remain quiescent when
not threatened by bodily invaders.

There ensues Cytokine Overkill where, now, the victim’s immune system is attacking the
individual him/herself, who no longer harbors an infection or an exposure to a poison. Now the
brain and spinal cord fall victim to the autoimmune assault. Theoretically, when a vicious chemical (i.e., a cytokine) attacks an organ, inflammation will ensue creating these classic medical pathologic signs and symptoms rubor, calor, dolor. These three are characteristic of ME relapses->
rubor = inflammation, dolor = pain, calor = fever.  However, the "febrile state" is in the brain 
and spinal cord, accounting for the myriad sufferings of ME patients. Accounting, also, for the inability to note a "fever" on a normal oral or rectal thermometer. (In all my years in Nursing, we
never were taught how to take the temperature of the encephalon or of the myelin sheath.)

MDs WHO PRESCRIBE "EXERCISE" or "PSYCHOTHERAPY" DON'T KNOW CFS/ME
Therefore, it's imperative that physicians, faced with a patient suffering ME, assume that during relapses (attacks of cytokine overkill) there is inflammation and fever of the Central Nervous 
System (brain and spinal cord) which requires extra fluids and cooling treatments. Now the nausea,
headache and collapse of the ME patient is explicable. The brain is on fire!!! Now we know why prescriptions to "exercise" are downright stupid, illogical. Do we healthcare professionals prescribe
exercise for any other febrile patients?  Likewise, psychotherapy (and, I love psychotherapy...it's my other profession). Do we prescribe psychotherapy for any other febrile patient?  

Fever isn't a hallmark of depression. Neither is headache or nausea or sudden physical collapse
indicative of a mental disorder.

ENVIRONMENTAL ILLNESS (E.I.)...EXTREME IMMUNE SYSTEM TOXICITY
An even more dramatic example of this “overkilling” immune activation is the disease known as
E.I.– ENVIRONMENTAL ILLNESS. These patients immune systems are so overwrought that
their housing, clothes, possessions, human contacts are severely curtailed...while society and the media often ridicule them. It’s a shame because these [and CFS/ME pts] are the “canaries in the
coal mine” whose immune fragilities are warning us all about the marauders of our own immune systems.

ME PATIENTS LANGUISH WHILE THE FEBRILE BRAIN GOES UNTREATED
Because of the multiplicity of immune system-activating culprits – and while well-meaning
scientists search for etiologic specifics (hoping to develop diagnostic tests and targeted
treatments) – CFS/ME patients shouldn’t be languishing for years and decades – as most
now do (still suffering after all these years...I wrote all about this illness in my 1992 book) –
with nonsense advice, misdiagnoses of neuroses, depressions, a psychiatric wastebasket, but
strangely lacking simple self-care instructions about symptomatic self-care treatments.

When MDs took The Hippocratic Oath, they promised to Primum Non Nocere. In the case
of CFS/ME, doctors have done and continue to do harm by labeling complete prostration
as "fatigue," by dismissing exhaustion, headache, nausea as "depression," by prescribing
exercise for this disease, known to be due to an activated immune system, unable to shut
itself off, then attacking the encephalon (brain) and myelin sheath (spinal cord).

I say, “Stop prescribing Exercise for ENDOGENOUSLY CHEMOTHERAPIZED PATIENTS. Stop it!”

Did they ever hear of Empiricism?  Trial and Error?  Well, I did it.  And it worked after 20 years
of downward spiraling of my own health due to debilitation from CFS/ME, what I have renamed DEBILITATING IMMUNOPATHIC RELAPSING ENCEPHALOMYELITIS, acronym DIRE.  It is a dire disease, especially when left untreated.

Since these patients have Haywire Immune Systems, they require Simple Physical Measures to treat this Hypercytokinization of the Central Nervous System.
~ Do MDs prescribe psychotherapy for cancer patients on Chemo? For tangential issues maybe, but not for the chemo-induced sufferings. And, mind you, those are short-lived EXOGENOUS CHEMOTHERAPIES.

~ CFS:DIRE, ME is Years- and Decades-Long ENDOGENOUS CHEMOTHERAPY!!!

Simple Symptomatic Treatments will gradually quiet the Activated Immune System
until fewer and less distressing relapses finally simmer down to zero relapses altogether.

Then, the CFS/ME-afflicted one can get back to being human again.

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

Wednesday, January 17, 2018

MYALGIC ENCEPHALOMYELITIS: BACKGROUND and DESCRIPTION


by
Helen Borel,RN,MFA,PhD

My Description of ME
ME symptoms vary in kind and severity levels depending on the length (months/years/decades) of cytokine overkill (self-toxification of encephalon and myelin sheath) flooding the victim's body. 

ME recurs in relapses with shorter & shorter remissions if untreated SYMPTOMATICALLY.
 

After a More than a Quarter Century, Nothing has Changed
about Etiologies, Diagnostics, Therapies...EXCEPT MANY 
MILLIONS MORE ME VICTIMS ARE SUFFERING WORLDWIDE

25 Years ago, I wrote a definitive work on ME, "Living With and Recovering from CHRONIC FATIGUE SYNDROME: Debilitating Immunopathic Relapsing Encephalomyelitis (DIRE)" It is a dire disease. That's why I invented that acronym for it. And my ME description is more inclusive because it adds the elements of immune system pathology, plus the fact that this is a relapsing disease with periods of remission. Although the ME patient is hit suddenly by relapses, exacerbations of symptoms, and inexplicably-occuring remissions.

My Treatise Provides a Panoramic Overview of ME
During horrific relapses of my own 20-year-ME-battle, I became an authority on ME, what I call in my book CFS:DIRE, the acronym for my book's title. I was the ideal person to undertake this task because:

1. I am a Registered Nurse with all the learning and expertise in patient care in hospitals, clinics and home settings of medical, surgical, and psychiatric illnesses...with detailed knowledge of symptoms and their treatments.

2. I am a Expert Medical Research Writer with 18 years on MEDICINE AVENUE (med/pharm/psych/lab/surg advertising agencies on New York City's Madison Avenue) as a 
Senior Medical Writer/Creative Director.

3. I am a Psychoanalyst/Psychotherapist in private practice for over 30 years, important because, unlike certain others in the mental health arena, I am absolutely certain that CFS:DIRE, ME, Low Natural Killer Cell Disease (Japan)... whatever this dire illness is labelled, is not a psychiatric disorder

Sadly, though, over the decades of a dilatory medical profession, unwilling to devise simple symptomatic treatments while we await definitive answers about etiologies and the development of early diagnostic tests, some CFS:DIRE, ME sufferers have suicided.  It's time Immunologists and Neurologists got back to the bedsides of CFS:DIRE, ME patients and developed symptomatic treatments for these horrific relapses.

4. I was a CFS:DIRE, ME sufferer for 20 years.  Having gone through all this disease's phases...Early, undiagnosed, ignored, given an antidepressant (which only caused weight-gain but didn't help the rampaging pathology); Increasingly-Recurring and more-serious relapses; Late-stage, horrifically incapacitated CFS:DIRE, ME.

In 1992, I published my COMPREHENSIVE COMPENDIUM, reporting on all the known research (100+ references). I disclosed the findings from the scientists involved.  I minutely examined the Centers for Disease Control (CDC) "guidelines" and tore their "criteria" apart with a fine tooth comb. I analyzed every, even remotely, related disease entity and etiologic factor that in any way could relate to CFS:DIRE, ME. This intensive work was undertaken DURING many horrific relapses of my own 20year-ME battle because I was determined to share all this information, plus my empiric remission protocol with other patients. 

Nothing New on the Research Front ~ Still, MEs Need Treatment
Therefore, ME-sufferers and their caretakers, I've created this blog to share with you all I discovered a quarter century ago, demonstrating a comprehensive overview of this neuroimmune disease->information that hasn't changed over all these years.  
Now you can find it in one central place. Here!

Especially because I've noticed that my multitude of ME Twitter followers at my @PsychDocConnect are often gleeful about some "new finding" that I published in 1992.  One tells of but one fact, known long ago, but describing it as new.  Another is joyful about some other fact I long ago reported in my book.  An MD says this. An ME patient says that.  That's fine, but none of this is new.  And the most important thing is to put ALL THE FACTS together where we as healthcare professionals and as ME patients can make some sense of what the disease is, what it's doing to its victims, and come up with a medically-sound SYMPTOMATIC TREATMENT PROGRAM that allows ME patients to go into full remission or, at the least, to reduce the recurrences of relapses and to minimize relapse severities.

Finally, in the early years of this 21st century, I responded to erroneous "medical" information published in the British Medical Journal.
See my BMJ article here-> http://www.bmj.com/rapid-response/2011/11/01/cfs-guidelines-irrelevant-actual-me-disease
 

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