When diagnosed in 1967, I was a junior lab technician in the Pharmacology research laboratory at the Veterinary College in Guelph, Ontario, Canada.
Curious about the science and history of MS, I began to study research and my review of history and research that continues to the present. When I hear about all the advances that have been made, I shake my head. In my review of 300 years of information, I see that in each generation, the same limited view is applied – using the latest technology and terminology. In a half century of reading, I have found that in the 21st century, what we believe are facts about multiple sclerosis, are – Myths!!
Myth # 1 – expect progressive decline …
Two or three hundred years ago most people recovered from the strange symptoms that we now call multiple sclerosis. To the medical system emerging from the Dark Ages, the only explanation was hysteria, and the label, “hysterical paralysis” was applied.
Recall the history of the society of the times – most people worked in agriculture, factories or service. There was no concern for the “unwashed masses;” if they didn’t work, they didn’t eat. So these people had to recover or starve.
Those who could afford care and treatment “declined progressively.” Miracle treatments of the day were mercury, arsenic, and some blood letting! The system was entrenched in the myth of alchemy and was ignorant of negative side effects of chemicals.
FACT – Recent papers by Romberg(2004), LeBolt (2004) and Patti (2003), observe that lack of movement and toxic drug side effects are far more damaging than the disease process. Negative side effects are ignored or explained away as more symptoms.
Myth # 2 – little chance of recovery …
In the 1700 and 1800s, the “unwashed masses” were beneath consideration, and their recovery was ignored. The newly emerging medical system wished to align with the wealthy and titled, not the unwashed masses. Attention was focused on those who could avail themselves to the treatment of the day.
FACT – Prior to pressure for early diagnosis for drug treatment, doctors waited until three significant episodes of obvious symptoms occurred before making the diagnosis. Many recovered from the experience of one or two episodes of funny symptoms, and went on to live out their lives with no further problems.
FACT – A significant percentage of people are fully mobile 25 years after diagnosis. Researchers are calling for a return to more detailed review of history [LINK to MAYO] and reduce the rush to apply the label. It is estimated that 50% of people diagnosed only have one serious episode of disease activity …
Myth # 3 – there are kinds of MS …
In modern times, we attach labels to what we perceive, and recovery, like mine, is explained away as “the mild kind.” Few observed my condition during serious exacerbations!!
Even though careful observers through the centuries have noted the affect of personality on the progress of the patient, in modern times, we still ignore the power of belief, and the link between mind and body. The Mediaeval church dictated separation of spirit and matter, ie mind and body … and the paradigm persists.
FACT – Current research reminds of Aesop’s Fable about Nine Blind Men Describing an Elephant.
FACT – centuries of dissections, autopsies and, modern MRI scans, show no relation between the condition of the patient, and the damage to myelin in the brain and spinal cord. “Kinds,” are labels that simplify discussion of observed clinical condition.
FACT – Recent research questions [LINK MRI] whether MRI serves any useful purpose in diagnosis, or, in monitoring of the course of MS.
Myth # 4 – in pregnancy MS is not active …
There are journal articles claiming that pregnancy is dangerous and accelerates the disease activity, and there are articles claiming that the disease process is dormant during pregnancy … take your pick. Advice to patients depends on perceptions of physicians and patients.
FACT – What we believe affects our wellness.
Read Letters From Readers[LINK] for some first hand experiences.
Myth # 5 – MS is a chronic inflammatory disease …
As research progressed in the study of viruses and bacteria, researchers designed a virus they believed could act like MS in laboratory animals and thus help investigate the course and action of the MS virus. This virus – EAE – experimental autoallergic encephalitis, was designed to present the symptoms of multiple sclerosis, as perceived after generations of observers focused their attention on the progressive decline in patients. (Myth #1) EAE is a chronic inflammatory process and results are taken as valid for the MS virus.
FACT – EAE is NOT MS. It is a virus designed for experimentation.
FACT It has been shown that inflammation is part of the healing process. Phagocytes ingest and digest remnants of damaged myelin and deliver cells that become new myelin.
FACT – MRI and autopsy studies have shown that there can be long periods in which the disease is inactive, with no evidence of inflammation.
Interferon is a class of soluble small proteins that inhibit VIRUS multiplication; interferon is produced by almost any animal virus – so interferon drug therapy is thought to be directed to stopping virus activity …
Myth # 6 – MS is an “autoimmune disease” …
FACT – With the many epidemics of the Middle Ages it was observed that while many die, some people were not affected, and others were affected, but recovered. Thus began the use of the term “immune,” defined in Dorland’s Medical Dictionary as “being highly resistant to a disease because of the formation of antibodies or the development of cellular immunity, or both, or, as a result of some other mechanism, as interferon activity in viral infections … an immune individual.”
With the development of vaccinations, a new term was required to distinguish natural immunity, and immunity due to vaccinations … and the terms “immunized” and “self-immunized” were born.
Moving along to the Age of Technology, the terms “auto-immune” and “Immune System“, made their appearance. Even though Dorland’s defines, “Auto-, a prefix denoting relationship to self,” a strange thing happened – the term auto-immune, ” has come to mean, ” directed against the body’s own tissue!!”
I find it curious that when we are run-down with reduced defenses or are not immune, we are considered to be in the process of destroying ourselves from within!! How did the meaning get twisted??
I have found NO research proving the AUTOIMMUNE THEORY …
If you know of any, please send me the references! Thank you.
Myth # 7 – “embryonic stem” cells will fix everything …
FACT – In the 1960’s, before the label “embryonic stem cell” was applied, physiology books described “undifferentiated cells,” that respond to the instruction of the local cell population to generate healthy new cells for repair and maintenance. Then, “experts” decided that the human embryo held the secret to activating these undifferentiated cells. How did healing of any kind ever occur by itself in maturity?
These cells have been identified in adults – as well as in embryos.
Stem means – to originate, derive, or be descendent. No matter what we call these cells, found throughout the body, they hold the answer to healing.
[LINK TO Me and My Stem Cells – Why the stem cell controversy is a non-issue!© 2005]
Myth # 8 – MRI is conclusive …
When doctors suspect MS, an MRI (magnetic resonance imaging) scan will be arranged. This has become the preferred method for confirming diagnosis of MS, as it is believed to detect clinically silent lesions in the brain.
FACT – The scan is a hopelessly inaccurate method of detection, and researchers have discovered that lesions – even lots of them in the brain – don’t necessarily indicate the presence of MS.
It was discovered that a scan could not rule out … or rule in, come to that, the possibility of MS. The presence of dark spots presumed to be brain lesions, didn’t necessarily indicate MS either. Even patients with 10 or more brain lesions didn’t develop MS, the study found.
My own MRI was done in 1995 to prove that I actually do rate the diagnosis of multiple sclerosis!! It reveals too many spots to count, and though I am fully mobile, has been interpreted to mean that I require 24 hour care!! Evidence in the thalamus and parietal lobe is interpreted to mean that I cannot process any incoming sensory information: so apparently I can’t see, hear, feel, taste or smell.
Myth # 9 – COST TO SOCIETY $500,000 per patient
In the 1980s, I read an article that the cost to society in medical care, childcare, transportation and lost wages of an MS patient was half a million dollars! So I wrote the Minister of Health who had been quoted, and asked Where do I get a refund?
I received a letter of congratulations from Mr Smitherman, but no $$$.