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
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.
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.
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.
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