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 illness. According 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 STAT. Empirically. 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.
Wednesday, February 21, 2018
Tuesday, February 13, 2018
ME/CFS:DIRE, Back to the Future - 2017 Report Reflects My 1992 Findings
by Helen Borel,RN,MFA,PhD
Just as I'd completed the last chapter - "Basic Ingredients for Enhanced Daily Living" - of my Living With and Recovering From CHRONIC FATIGUE SYNDROME: Debilitating Immunopathic Relapsing Encephalomyelitis (1992), yet another scientific
study surfaced that I felt compelled to present and discuss in this book. Thus, it became
the book's two-page Addendum:
A Key Recent Research Report and Commentary
The CRH-Cortisol Connection
"Hormonal deficiencies in the endocrine systems and brains of people with CFS:DIRE,
which may explain many of the disorder's symptoms, have recently been identified
(Demitrack, M.A., et al. Journal of Clinical Endocrinology and Metabolism, Dec. 1991).
The researchers found blood and urine levels of the adrenal hormone cortisol to be lower in 30 CFS:DIRE patients than in 72 healthy subjects. Lethargy and fatigue are known symptoms of even the subtlest cortisol deficiency."
"Normally, the adrenals secrete cortisol in response to stress. When the body reacts to a stressor - poisons, allergens, viruses, bacteria, or emotional crisis, or even intense creative and intellectual effort, for example - a complex endocrine process ensues. First, the hypothalamus secretes corticotropin-releasing hormone (CRH) which induces the pituitary to secrete ACTH. The ACTH then stimulates adrenal production of cortisol."
Cortisol Deficiency in ME/CFS:DIRE
"The cortisol deficiency noted in CFS:DIRE patients has been attributed by Demitrack et al. to CRH deficiency. This is considered an important finding because, beside its effects on ACTH and cortisol secretion, energy levels are normally increased by the direct action of CRH on the brain. This could mean that a CRH deficiency might contribute to some of the exhaustion prevalent in CFS:DIRE. But both the CRH and cortisol deficiencies together can affect symptomatology and the course of the illness, the investigators claim."
"This type of biochemical imbalance is also seen in patients with depressive disorders due to unbalanced biochemistry such as certain endogenous depressions, hypothyroidism and Cushing's Syndrome. Dr. Philip W. Gold, one of the study's authors, asserted that 'Finding a common central nervous system [CNS] defect in these illnesses underscores the fact that they are all fundamentally medical disorders.' He includes CFS:DIRE in this 'medical disorder' category."
Blaming the Brain as Etiologic
When the Brain is Targeted by a Derailed Immune System
"As a result of this small study, there is therefore a hypothesis that in CFS:DIRE there is
insufficient stimulation of certain parts of the brain by cortisol or CRH, accounting for
symptoms. However, the scientists pursuing these defects as cause rather than as but one of many untoward effects of other pathologic processes, such as primary immune dysfunction (idiopathic or toxic in etiology), hypersecretions of cytokines, viral reactivations, and recurrent brain fevers - encephalitis or encephalomyelitis - are barking up the wrong tree."
"Because, if you flood the brain with endogenous toxins, reawakened viral hordes, and chronic recurrent heat from fevers undetectable by rectal or oral thermometers, you can pretty well cripple neurologic, neurohormonal and neuroimmune functions, both at the cellular structural level and at the biochemical pathways level. Neuroimmunal biochemical communications will go haywire. This in turn will have a profound effect on hypothalamic and adrenal function! The CRH-cortisol problem, therefore, I believe, is but one pathologic result of profound immune dysregulation which contributes to the multisystem disorders characteristic of CFS:DIRE."
"Dr. Stephen E. Straus, another contributor to this CRH-cortisol investigation, points out, 'Because cortisol is a potent suppressor of immune responses, a mild reduction in cortisol levels could allow the immune system to remain overactive, leading to findings such as higher-than-normal antibody levels.' Immune overreactivity and high antibody levels are characteristic of CFS:DIRE."
In summation, at the close of my 1992 book, I concluded: "Hypothetically, then, treatment with cortisol could correct the CRH-cortisol problem which might reduce CFS:DIRE symptoms. However, exogenous administration of cortisol would cause hypothalamic secretion of CRH to shut down - due to adequate external cortisol supply -
producing a dangerous exacerbation of CRH deficiency. Also, such a treatment presupposes that the CRH-cortisol axis deficiencies are primary and would ignore the real underlying pathology - primary immune dysregulation (due to some as yet unpinpointed cause, probably poisoning [here I'm referring to toxins in air, water, food, household chemicals, etc.]). The value of investigating the CRH-cortisol connection in CFS:DIRE is it's a new avenue of possible discovery of the mechanisms producing the characteristic relapsing brain fevers, exhaustions and muscular pain."
[The above is quoted in toto from the 2-page addendum in my 1992 book which
provided the scientific facts and the conclusions I arrived at 25 years ago!]
~~~~~~~~~~~~~
You'll note, in the following abstract of their 2017 paper in Molecular Neurobiology, that these 21st Century scientists arrive at the exact same conclusions I concluded in 1992. Here is the abstract of the results of that directly related report which reviewed 167 studies published between 1989 and 2015, several of which I referenced in my book
so long ago.
"Hypothalamic-Pituitary-Adrenal Hypofunction in Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) as a Consequence of Activated Immune-Inflammatory and Oxidative and Nitrosated Pathways" (Molecular Neurobiology, November 2017, Vol. 54, Issue 9, pp. 6806-6819)
There is evidence that immune-inflammatory and oxidative and nitrosative stress (O&NS) pathways play a role in the pathophysiology of myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). There is also evidence that these neuroimmune diseases are accompanied by hypothalamic-pituitary-adrenal (HPA) axis hypoactivity as indicated by lowered baseline glucocorticoid levels. This paper aims to review the bidirectional communications between immune-inflammatory and O&NS pathways and HPA axis hypoactivity in ME/CFS, considering two possibilities: (a) Activation of immune-inflammatory pathways is secondary to HPA axis hypofunction via attenuated negative feedback mechanisms, or (b) chronic activated immune-inflammatory and O&NS pathways play a causative role in HPA axis hypoactivity.
Electronic databases, i.e., PUBMED, Scopus, and Google Scholar, were used as sources for this narrative review by using keywords CFS, ME, cortisol, ACTH, CRH, HPA axis, glucocorticoid receptor, cytokines, immune, immunity, inflammation, and O&NS.
Findings show that activation of immune-inflammatory and O&NS pathways in ME/CFS are probably not secondary to HPA axis hypoactivity and that activation of these pathways may underpin HPA axis hypofunction in ME/CFS.
Mechanistic explanations comprise increased levels of tumor necrosis factor-Alpha,
T regulatory responses with elevated levels of interleukin-10 and transforming growth factor-Beta, elevated levels of nitric oxide, and viral/bacterial-mediated mechanisms.
HPA axis hypoactivity in ME/CFS is most likely a consequence and not a cause of a wide variety of activated immune-inflammatory and O&NS pathways in that illness.
Morris, G., Anderson, G. & Maes, M. Mol Neurobiol (2017) 54:6805.
To access this entire paper, you'll have to subscribe to this Springer publication at this site: https://doi.org/10.1007/s12035-016-0170-2
~~~~~~~~~~~~~~~~~~~
As I've pointed out in other of my ME RESEARCH CENTRAL blogs, all the identical
information about this pandemic disease rapidly accumulating these days, was known more than a quarter century ago. I reported it from the scientific literature then (1992).
And I came to the same conclusions in 1992 that these scientists arrived at in 2017.
I only emphasize this because IT'S TIME FOR SYMPTOMATIC TREATMENTS
while we await definitive science that pins down exact etiology(ies).
(c) Copyright 1992 to 2018 by Dr. Helen Borel. All rights reserved.
Just as I'd completed the last chapter - "Basic Ingredients for Enhanced Daily Living" - of my Living With and Recovering From CHRONIC FATIGUE SYNDROME: Debilitating Immunopathic Relapsing Encephalomyelitis (1992), yet another scientific
study surfaced that I felt compelled to present and discuss in this book. Thus, it became
the book's two-page Addendum:
A Key Recent Research Report and Commentary
The CRH-Cortisol Connection
"Hormonal deficiencies in the endocrine systems and brains of people with CFS:DIRE,
which may explain many of the disorder's symptoms, have recently been identified
(Demitrack, M.A., et al. Journal of Clinical Endocrinology and Metabolism, Dec. 1991).
The researchers found blood and urine levels of the adrenal hormone cortisol to be lower in 30 CFS:DIRE patients than in 72 healthy subjects. Lethargy and fatigue are known symptoms of even the subtlest cortisol deficiency."
"Normally, the adrenals secrete cortisol in response to stress. When the body reacts to a stressor - poisons, allergens, viruses, bacteria, or emotional crisis, or even intense creative and intellectual effort, for example - a complex endocrine process ensues. First, the hypothalamus secretes corticotropin-releasing hormone (CRH) which induces the pituitary to secrete ACTH. The ACTH then stimulates adrenal production of cortisol."
Cortisol Deficiency in ME/CFS:DIRE
"The cortisol deficiency noted in CFS:DIRE patients has been attributed by Demitrack et al. to CRH deficiency. This is considered an important finding because, beside its effects on ACTH and cortisol secretion, energy levels are normally increased by the direct action of CRH on the brain. This could mean that a CRH deficiency might contribute to some of the exhaustion prevalent in CFS:DIRE. But both the CRH and cortisol deficiencies together can affect symptomatology and the course of the illness, the investigators claim."
"This type of biochemical imbalance is also seen in patients with depressive disorders due to unbalanced biochemistry such as certain endogenous depressions, hypothyroidism and Cushing's Syndrome. Dr. Philip W. Gold, one of the study's authors, asserted that 'Finding a common central nervous system [CNS] defect in these illnesses underscores the fact that they are all fundamentally medical disorders.' He includes CFS:DIRE in this 'medical disorder' category."
Blaming the Brain as Etiologic
When the Brain is Targeted by a Derailed Immune System
"As a result of this small study, there is therefore a hypothesis that in CFS:DIRE there is
insufficient stimulation of certain parts of the brain by cortisol or CRH, accounting for
symptoms. However, the scientists pursuing these defects as cause rather than as but one of many untoward effects of other pathologic processes, such as primary immune dysfunction (idiopathic or toxic in etiology), hypersecretions of cytokines, viral reactivations, and recurrent brain fevers - encephalitis or encephalomyelitis - are barking up the wrong tree."
"Because, if you flood the brain with endogenous toxins, reawakened viral hordes, and chronic recurrent heat from fevers undetectable by rectal or oral thermometers, you can pretty well cripple neurologic, neurohormonal and neuroimmune functions, both at the cellular structural level and at the biochemical pathways level. Neuroimmunal biochemical communications will go haywire. This in turn will have a profound effect on hypothalamic and adrenal function! The CRH-cortisol problem, therefore, I believe, is but one pathologic result of profound immune dysregulation which contributes to the multisystem disorders characteristic of CFS:DIRE."
"Dr. Stephen E. Straus, another contributor to this CRH-cortisol investigation, points out, 'Because cortisol is a potent suppressor of immune responses, a mild reduction in cortisol levels could allow the immune system to remain overactive, leading to findings such as higher-than-normal antibody levels.' Immune overreactivity and high antibody levels are characteristic of CFS:DIRE."
In summation, at the close of my 1992 book, I concluded: "Hypothetically, then, treatment with cortisol could correct the CRH-cortisol problem which might reduce CFS:DIRE symptoms. However, exogenous administration of cortisol would cause hypothalamic secretion of CRH to shut down - due to adequate external cortisol supply -
producing a dangerous exacerbation of CRH deficiency. Also, such a treatment presupposes that the CRH-cortisol axis deficiencies are primary and would ignore the real underlying pathology - primary immune dysregulation (due to some as yet unpinpointed cause, probably poisoning [here I'm referring to toxins in air, water, food, household chemicals, etc.]). The value of investigating the CRH-cortisol connection in CFS:DIRE is it's a new avenue of possible discovery of the mechanisms producing the characteristic relapsing brain fevers, exhaustions and muscular pain."
[The above is quoted in toto from the 2-page addendum in my 1992 book which
provided the scientific facts and the conclusions I arrived at 25 years ago!]
~~~~~~~~~~~~~
You'll note, in the following abstract of their 2017 paper in Molecular Neurobiology, that these 21st Century scientists arrive at the exact same conclusions I concluded in 1992. Here is the abstract of the results of that directly related report which reviewed 167 studies published between 1989 and 2015, several of which I referenced in my book
so long ago.
"Hypothalamic-Pituitary-Adrenal Hypofunction in Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) as a Consequence of Activated Immune-Inflammatory and Oxidative and Nitrosated Pathways" (Molecular Neurobiology, November 2017, Vol. 54, Issue 9, pp. 6806-6819)
There is evidence that immune-inflammatory and oxidative and nitrosative stress (O&NS) pathways play a role in the pathophysiology of myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). There is also evidence that these neuroimmune diseases are accompanied by hypothalamic-pituitary-adrenal (HPA) axis hypoactivity as indicated by lowered baseline glucocorticoid levels. This paper aims to review the bidirectional communications between immune-inflammatory and O&NS pathways and HPA axis hypoactivity in ME/CFS, considering two possibilities: (a) Activation of immune-inflammatory pathways is secondary to HPA axis hypofunction via attenuated negative feedback mechanisms, or (b) chronic activated immune-inflammatory and O&NS pathways play a causative role in HPA axis hypoactivity.
Electronic databases, i.e., PUBMED, Scopus, and Google Scholar, were used as sources for this narrative review by using keywords CFS, ME, cortisol, ACTH, CRH, HPA axis, glucocorticoid receptor, cytokines, immune, immunity, inflammation, and O&NS.
Findings show that activation of immune-inflammatory and O&NS pathways in ME/CFS are probably not secondary to HPA axis hypoactivity and that activation of these pathways may underpin HPA axis hypofunction in ME/CFS.
Mechanistic explanations comprise increased levels of tumor necrosis factor-Alpha,
T regulatory responses with elevated levels of interleukin-10 and transforming growth factor-Beta, elevated levels of nitric oxide, and viral/bacterial-mediated mechanisms.
HPA axis hypoactivity in ME/CFS is most likely a consequence and not a cause of a wide variety of activated immune-inflammatory and O&NS pathways in that illness.
Morris, G., Anderson, G. & Maes, M. Mol Neurobiol (2017) 54:6805.
To access this entire paper, you'll have to subscribe to this Springer publication at this site: https://doi.org/10.1007/s12035-016-0170-2
~~~~~~~~~~~~~~~~~~~
As I've pointed out in other of my ME RESEARCH CENTRAL blogs, all the identical
information about this pandemic disease rapidly accumulating these days, was known more than a quarter century ago. I reported it from the scientific literature then (1992).
And I came to the same conclusions in 1992 that these scientists arrived at in 2017.
I only emphasize this because IT'S TIME FOR SYMPTOMATIC TREATMENTS
while we await definitive science that pins down exact etiology(ies).
(c) Copyright 1992 to 2018 by Dr. Helen Borel. All rights reserved.
Sunday, February 11, 2018
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.
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.
Saturday, February 10, 2018
ME/CFS:DIRE, Epidemic as Long Ago as 1956
"1956 EPIDEMIC NEUROMYASTHENIA" reported in The New England Journal of Medicine (NEJM)
by Helen Borel,RN,MFA,PhD
In their 1957 "Epidemic Neuromyasthenia" article, physicians D.C. Poskanser, D.A. Henderson, E. Charles Kunkle, W.B. Clement, J.O. Brown and S.S. Kalter,PhD, reporting in the NEJM about a 1956 "CFS" epidemic "An Outbreak in Punta Gorda, Florida," stated:
"An obscure epidemic illness occurred in a small Florida community in the spring of
1956....characterized principally by fatigue, headache, nuchal pain, alterations in emotional status and mentation, nausea and vomiting, paresthesias, aching muscular pain and a prolonged, relapsing course. Symptoms were protean...."
Different Labels for the Same Disease Worldwide
They go on to state, "The entity is similar to that described by various authors, particularly in recent years, from many different parts of the world. It has been termed
'Iceland Disease,' 'benign myalgic encephalomyelitis,' 'Akureyri disease,' and 'vegetative
neuritis.'"
According to these medical authors, this disease reportedly occurred :
~ in 1948-1949 in Iceland
~ in 1949-1951 in Australia
~ in 1952 in Denmark
~ in 1954 in Alaska
~ in 1955 in Germany
~ in 1955 in South Africa
~ and they added that several outbreaks occurred in England, the first in 1953 in Coventry
and several occurred in the United States, the first in 1934 in Los Angeles.
These facts, reported a long time ago, are a sorry reminder of how little has been done
- in the 60 years since this NEJM report - to provide comprehensive symptomatic treatment plans to patients suffering this obviously autoimmune disease that afflicts the Central Nervous System (encephalon and myelin sheath).We treat Multiple Sclerosis (MS) patients with much more sympathy (virtually none to ME/CFS:DIRE patients). And we do provide targeted Rx medications from ongoing research plus various symptomatic treatments and care plans for MS patients. ME/CFS:DIRE is similar in that MS is an autoimmune disease which attacks the myelin and cripples its sufferers to varying degrees, depending upon the locations of demyelinization. Is something similar going on in the
myelin of ME/CFS:DIRE patients?
To access the full 1957 scientific report, you'll need a subscription to The New England
Journal of Medicine here-> http://www.nejm.org
The title of the 1957 article is
"Epidemic Neuromyasthenia - An Outbreak in Punta Gorda, Florida"
Finally, about this particular epidemic, the doctor-authors reported that a gradually increasing number of young and middle-aged adults were hospitalized with "prostrating symptoms".
That description, so long ago, of "prostration" rather than "fatigue" is exactly what I described in my 1992 clinical compendium Living With and Recovering From CHRONIC FATIGUE SYNDROME: Debilitating Immunopathic Relapsing Encephalomyelitis (DIRE).
The fact that the clinically broad, bodywide signs and symptoms, reflective of Immune System Decompensation and Central Nervous System Disruption that characterize this disease, and create such diverse miseries for its victims, were known so long ago is a cautionary tale.
I'm left distressed at why such patients are STILL not being offered a coherent regimen of Symptomatic Treatments to quell brain inflammation and to quiet down a run-amok immune system. We healthcare professionals never, with other pathologies, withhold logical and empirical treatments because scientists haven't yet pinpointed any etiologies.
Imagine a Nurse or Physician not providing extra fluid intake and ice packs to a febrile
patient just because we don't yet know what the fever is from...a virus? a bacterium? heat stroke? Nah. Let's let the patient get sicker, the brain get hotter, while we await some lab reports. Stupid, huh? That's the kind of attitudes too many MDs have inflicted on
millions of ME/CFS:DIRE patients. As a healthcare professional, I call for sensible, here-and-now treatment plans that attack basic symptoms to calm the immune system, to protect the brain and spinal cord.
Hurrah for ongoing research; but, we've got to get these patients out of bed and into
remission. Treat the symptoms, doctors. It could take another 60 years before we pinpoint any etiologic culprits.
(c) Copyright 1992 to 2018 by Dr. Helen Borel. All rights reserved.
Monday, February 5, 2018
ME,CFS, DIRE: High Titers of Herpesvirus CMV (cytomegalovirus)
by Helen Borel,RN,MFA,PhD
High cytomegalovirus (CMV) titers along with high Epstein-Barr virus (EBV)) titers
have been found in many CFS:DIRE patients. This herpesvirus, unlike the case with latent EBV which can be reactivated indefinitely, can be overcome provided the immune system is up to the task. Once routed by the functioning immune system, immunity against subsequent CMV invasion is conferred for life.
Cytomegalovirus and Splenomegaly
Splenomegaly means "enlarged spleen". Some cases of "true idiopathic splenomegaly,"
in which the investigators Hesdorffer et al. (Scandinavian Journal of Haematology, 1986)
felt splenectomy was contraindicated, demonstrated prior CMV infection. They suggest a possible link between CMV infection and the development of splenomegaly, concluding that "The association between a previous cytomegalovirus infection and the development of splenomegaly is of particular importance in light of the possible association between the cytomegalovirus, the acquired immune deficiency syndrome and non-Hodgkin's lymphoma."
ME,CFS,DIRE Patients Must Protect
their Immune Systems from CMV
As a sufferer of ME:CFS:DIRE, you must use all immunosupportive measures at your
disposal to prevent infection with the cytomegalovirus. Patients who already have high
CMV titers need to sharply reduce their stress levels and markedly increase their vitamins and fluid intake levels.
CMV and Acquired Immunodeficiency Syndrome
Unfortunately, severely immunodamaged AIDS patients are susceptible to blindness caused by CMV retinitis, stated Philip J. Hills, writing in The New York Times (Sept. 28, 1991). CMV is considered an opportunistic infection in the case of AIDS. At the time
I reported this information (in my 1992 book), Astra Pharmaceuticals Foscavir (R), that had to be administered intravenously, indefinitely, was available for these cases at the prohibitive cost of $58/day. And that was merely the wholesale price!
Syntex's less expensive Gancyclovir (R) had been used to treat CMV infections; however, about 50% of such treated patients suffered severe side effects, including leukopenia (low white blood cell count). And AIDS and ME:CFS:DIRE patients can ill-afford decreases in WBCs. Also, Foscavir's serious side effects can include renal damage and seizures possibly offset by close patient monitoring during treatment.
Cytomegalovirus (CMV) is Only One of Many Etiologic Suspects
No one has proposed CMV as a strong etiologic candidate for ME:CFS:DIRE, although
its presence in so many of such victims can do nothing but obstruct the overall course of recovery. And its association with other immunocompromised states and lymphomas is not a pleasant caution to be aware of for stress-vulnerable Debilitating Immunopathic Relapsing Encephalomyelitis (DIRE) patients.
(c) Copyright 1992 to 2018 by Dr. Helen Borel. All rights reserved.
High cytomegalovirus (CMV) titers along with high Epstein-Barr virus (EBV)) titers
have been found in many CFS:DIRE patients. This herpesvirus, unlike the case with latent EBV which can be reactivated indefinitely, can be overcome provided the immune system is up to the task. Once routed by the functioning immune system, immunity against subsequent CMV invasion is conferred for life.
Cytomegalovirus and Splenomegaly
Splenomegaly means "enlarged spleen". Some cases of "true idiopathic splenomegaly,"
in which the investigators Hesdorffer et al. (Scandinavian Journal of Haematology, 1986)
felt splenectomy was contraindicated, demonstrated prior CMV infection. They suggest a possible link between CMV infection and the development of splenomegaly, concluding that "The association between a previous cytomegalovirus infection and the development of splenomegaly is of particular importance in light of the possible association between the cytomegalovirus, the acquired immune deficiency syndrome and non-Hodgkin's lymphoma."
ME,CFS,DIRE Patients Must Protect
their Immune Systems from CMV
As a sufferer of ME:CFS:DIRE, you must use all immunosupportive measures at your
disposal to prevent infection with the cytomegalovirus. Patients who already have high
CMV titers need to sharply reduce their stress levels and markedly increase their vitamins and fluid intake levels.
CMV and Acquired Immunodeficiency Syndrome
Unfortunately, severely immunodamaged AIDS patients are susceptible to blindness caused by CMV retinitis, stated Philip J. Hills, writing in The New York Times (Sept. 28, 1991). CMV is considered an opportunistic infection in the case of AIDS. At the time
I reported this information (in my 1992 book), Astra Pharmaceuticals Foscavir (R), that had to be administered intravenously, indefinitely, was available for these cases at the prohibitive cost of $58/day. And that was merely the wholesale price!
Syntex's less expensive Gancyclovir (R) had been used to treat CMV infections; however, about 50% of such treated patients suffered severe side effects, including leukopenia (low white blood cell count). And AIDS and ME:CFS:DIRE patients can ill-afford decreases in WBCs. Also, Foscavir's serious side effects can include renal damage and seizures possibly offset by close patient monitoring during treatment.
Cytomegalovirus (CMV) is Only One of Many Etiologic Suspects
No one has proposed CMV as a strong etiologic candidate for ME:CFS:DIRE, although
its presence in so many of such victims can do nothing but obstruct the overall course of recovery. And its association with other immunocompromised states and lymphomas is not a pleasant caution to be aware of for stress-vulnerable Debilitating Immunopathic Relapsing Encephalomyelitis (DIRE) patients.
(c) Copyright 1992 to 2018 by Dr. Helen Borel. All rights reserved.
Saturday, February 3, 2018
ME,CFS:DIRE: Predictions, Pleas, PsychiaCrazy, Physician Neglect
by Helen Borel,RN,MFA,PhD
As I stated in my 1992 compendium, referencing the terrible mishandling by American government medical "professionals," of the DIRE epidemic CFS/ME, "Major publicity
efforts and strong political actions are going to be necessary before funding for adequate
and competent medical research into etiologies, treatments and preventions can become
a reality".
Severely Compromised Immune Systems: Legacy of a Toxic World?
"Environmental Illness" - multiple allergies, hyperallergicity, multiple toxicities, awful illness relapses upon even minimal exposure to toxins and allergens (toxins and allergens causing no symptoms in immune-competent individuals) - may well be, rather than a separate disorder, but one expression of the severe ultra-hypersensitivity of individuals with damaged immune cells, as in ME, CFS:DIRE. And therefore whose impaired immune function leads to the symptoms which mimic radiation sickness or prolonged chemotherapy (nausea, headache, feverishness not necessarily registered on an oral or rectal thermometer, and prostration) of the relapsing disease known pejoratively as
"chronic fatigue syndrome".
Symptom Severity Must be Taken Seriously by Physicians
Profound Exhaustion, not the trivializing designation "chronic fatigue syndrome," is only one feature of a painful and debilitating cluster of relapsing ME, CFS:DIRE symptoms. These include severe, recurrent secondary respiratory infections (common bacterial and opportunistic), brain fevers, chills, night sweats, headache, nausea, photophobia, and others leading to an aesthenia and sickliness that sharply curtail or arrest normal activity and alters appetite.
Self care grows progressively constricted with poor nutritional status one result, and social isolation the ultimate tragedy, due to an incapacity to live a normal life during relapses and to residual weakness during remissions with little let-up before the next relapse assault. And the suffering inflicted by this illness has been worsened because of how physicians have been dismissing this disorder and its victims for decades. [Note: this description of the suffering patient's experience and of MDs' dismissiveness of these patients' signs and symptoms, was published by me in 1992.]
What has Psychiatry Got to Do with Endorphinization
of the CNS by a Haywire Immune System?
Ill people deserve to be taken seriously by virtue of their illness history. And ME, CFS:DIRE patients experience repeated bacterial respiratory infections, often have high titers of Epstein-Barr Virus (EBV) and Cytomegalovirus (CMV) or other viruses, suffer relapsing low-grade feverishness, chills, sweats, nausea and excessive multiple allergies and environmental sensitivities. None of this constellation of characteristic symptoms or signs appears in any, including the most recent, edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the "bible" of psychiatrists. Nor are these signs and symptoms of infection, encephalitis (brain inflammation) and immune system decompensation known in psychiatry to arise from depressive disorders, from anxiety, from hysteria, from personality disorders, or from the psychoses.
Nonetheless, psychiatrists and psychologists too often persist in butting in on the specialties in which they have zero expertise - Immunology, Infectious Diseases, Virology, and Neurology. Arrogantly so, they are frequently as ready, as are too many of their general medical colleagues, to be dismissive of patients whose illnesses are relatively new, or difficult to categorize due to the gap in scientific knowledge at the time suffering patients present themselves for diagnosis and care.
A Delusion of Some Psychiatrists is that Exercise
and Cognitive Behavioral Therapy (CBT)
are appropriate Prescriptions for a
Severe, Relapsing NeuroImmune Disorder
Since when do we treat a progressively worsening autoimmune disorder including cerebral and spinal cord pathologies by revving up the immune-compromised patient's
sick immune system? By revving up the inflammatory (assume febrile, too) process
going on in the brain, during relapse attacks, with "exercise"? Here's where it's the psychiatrists who promote this MIS-treatment who are crazy!
Also, what in the world (other than ineffective "comforting" of distressed physically ill patients) has CBT got to do with turning around an immune system on cytokine overkill? Don't psychiatrists have enough to do with schizophrenia, major depression, bipolar disorder and so forth? They should steer clear of advising immune-compromised/ encephalitis patients to exercise. Hmm. Maybe they're longing to offer CBT to meningitis patients. Or to cerebral Herpes Zoster ("shingles"<-another stupid name for a severe, painful and sometimes deadly disease) patients. Or maybe CBT can treat leukemia? Or maybe they should tell a scleroderma patient to "exercise". How about CBT for an acute appendicitis patient? What about "exercise" prescriptions for a myaesthenia gravis or acute poliomyelitis patient?
Some Psychiatrists Do Grasp Serious Physiologic Pathology
Except for those few mental health professionals acquainted with the research in psychoneuroimmunology, who understand well these interconnections in physiology and biochemistry and can offer support to physically ill patients, psychiatric professionals should steer clear of characterizing or treating ME, CFS:DIRE patients!
ME, CFS:DIRE Heroes must be Immunologists, Neurologists,
Toxicologists, Microbiologists, Infectious Disease Specialists
Which sounds the clarion call to all those specialists who ought to be treating ME, CFS:DIRE patients with regimens that address their signs and symptoms...while we
impatiently await specific etiologies and specific diagnostic tests to pinpoint this illness
at its earliest manifestation in a patient before it progresses to lifelong debility.
(c) 1992 to 2018 by Dr. Helen Borel. All rights reserved.
As I stated in my 1992 compendium, referencing the terrible mishandling by American government medical "professionals," of the DIRE epidemic CFS/ME, "Major publicity
efforts and strong political actions are going to be necessary before funding for adequate
and competent medical research into etiologies, treatments and preventions can become
a reality".
Severely Compromised Immune Systems: Legacy of a Toxic World?
"Environmental Illness" - multiple allergies, hyperallergicity, multiple toxicities, awful illness relapses upon even minimal exposure to toxins and allergens (toxins and allergens causing no symptoms in immune-competent individuals) - may well be, rather than a separate disorder, but one expression of the severe ultra-hypersensitivity of individuals with damaged immune cells, as in ME, CFS:DIRE. And therefore whose impaired immune function leads to the symptoms which mimic radiation sickness or prolonged chemotherapy (nausea, headache, feverishness not necessarily registered on an oral or rectal thermometer, and prostration) of the relapsing disease known pejoratively as
"chronic fatigue syndrome".
Symptom Severity Must be Taken Seriously by Physicians
Profound Exhaustion, not the trivializing designation "chronic fatigue syndrome," is only one feature of a painful and debilitating cluster of relapsing ME, CFS:DIRE symptoms. These include severe, recurrent secondary respiratory infections (common bacterial and opportunistic), brain fevers, chills, night sweats, headache, nausea, photophobia, and others leading to an aesthenia and sickliness that sharply curtail or arrest normal activity and alters appetite.
Self care grows progressively constricted with poor nutritional status one result, and social isolation the ultimate tragedy, due to an incapacity to live a normal life during relapses and to residual weakness during remissions with little let-up before the next relapse assault. And the suffering inflicted by this illness has been worsened because of how physicians have been dismissing this disorder and its victims for decades. [Note: this description of the suffering patient's experience and of MDs' dismissiveness of these patients' signs and symptoms, was published by me in 1992.]
What has Psychiatry Got to Do with Endorphinization
of the CNS by a Haywire Immune System?
Ill people deserve to be taken seriously by virtue of their illness history. And ME, CFS:DIRE patients experience repeated bacterial respiratory infections, often have high titers of Epstein-Barr Virus (EBV) and Cytomegalovirus (CMV) or other viruses, suffer relapsing low-grade feverishness, chills, sweats, nausea and excessive multiple allergies and environmental sensitivities. None of this constellation of characteristic symptoms or signs appears in any, including the most recent, edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the "bible" of psychiatrists. Nor are these signs and symptoms of infection, encephalitis (brain inflammation) and immune system decompensation known in psychiatry to arise from depressive disorders, from anxiety, from hysteria, from personality disorders, or from the psychoses.
Nonetheless, psychiatrists and psychologists too often persist in butting in on the specialties in which they have zero expertise - Immunology, Infectious Diseases, Virology, and Neurology. Arrogantly so, they are frequently as ready, as are too many of their general medical colleagues, to be dismissive of patients whose illnesses are relatively new, or difficult to categorize due to the gap in scientific knowledge at the time suffering patients present themselves for diagnosis and care.
A Delusion of Some Psychiatrists is that Exercise
and Cognitive Behavioral Therapy (CBT)
are appropriate Prescriptions for a
Severe, Relapsing NeuroImmune Disorder
Since when do we treat a progressively worsening autoimmune disorder including cerebral and spinal cord pathologies by revving up the immune-compromised patient's
sick immune system? By revving up the inflammatory (assume febrile, too) process
going on in the brain, during relapse attacks, with "exercise"? Here's where it's the psychiatrists who promote this MIS-treatment who are crazy!
Also, what in the world (other than ineffective "comforting" of distressed physically ill patients) has CBT got to do with turning around an immune system on cytokine overkill? Don't psychiatrists have enough to do with schizophrenia, major depression, bipolar disorder and so forth? They should steer clear of advising immune-compromised/ encephalitis patients to exercise. Hmm. Maybe they're longing to offer CBT to meningitis patients. Or to cerebral Herpes Zoster ("shingles"<-another stupid name for a severe, painful and sometimes deadly disease) patients. Or maybe CBT can treat leukemia? Or maybe they should tell a scleroderma patient to "exercise". How about CBT for an acute appendicitis patient? What about "exercise" prescriptions for a myaesthenia gravis or acute poliomyelitis patient?
Some Psychiatrists Do Grasp Serious Physiologic Pathology
Except for those few mental health professionals acquainted with the research in psychoneuroimmunology, who understand well these interconnections in physiology and biochemistry and can offer support to physically ill patients, psychiatric professionals should steer clear of characterizing or treating ME, CFS:DIRE patients!
ME, CFS:DIRE Heroes must be Immunologists, Neurologists,
Toxicologists, Microbiologists, Infectious Disease Specialists
Which sounds the clarion call to all those specialists who ought to be treating ME, CFS:DIRE patients with regimens that address their signs and symptoms...while we
impatiently await specific etiologies and specific diagnostic tests to pinpoint this illness
at its earliest manifestation in a patient before it progresses to lifelong debility.
(c) 1992 to 2018 by Dr. Helen Borel. All rights reserved.
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.
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.
Subscribe to:
Posts (Atom)