Atypical MS

I have used an earlier research name for my disease in order to avoid initial confusion, because many people are not aware that atypical MS, or myalgic encephalomyelitis, is not in fact the same thing as chronic fatigue syndrome. People who genuinely have correctly-diagnosed ME do not experience fatigue that is chronic - ME is a disease that does not cause chronic fatigue, and does not even necessarily cause fatigue as a symptom. It is not defined or diagnosed based on fatigue.

ME was registered as an organic neurological disease in the WHO ICD under G.93.3 in 1969, based on years of existing scientific research and understanding at the time. The term "CFS" didn't even exist until nearly twenty years later. When CFS did appear in the WHO ICD after 1988, it was registered under a completely different - and separate - code, 780.81 or "Symptoms Signs and Ill-Defined Conditions". ME has maintained appropriate G.9 neurological categorization ever since it was registered in 1969.

There is no mystery; ME is a clearly differentiated disease with a known and identified pathogenic cause, a test is available to confirm or rule out whether or not you have the disease, and the mechanisms of how it causes the symptoms and disabilities that it does are well-understood by science. The only mystery here is how these unrelated and contradictory terms and definitions somehow came to be associated in people's minds. Yet because of ongoing confusion created by this persistent widespread inaccurate information, it is literally impossible for patients who genuinely have ME to access appropriate medical care - including diagnostic evaluation, tests, treatment, everything - specific to their condition, because as soon as a doctor hears that a patient has ME, they instantly believe they are seeing a patient with "CFS", and do not realize that that is something entirely different from ME.

This has dramatically affected my ability to access appropriate treatment and evaluation for the pain caused by my disease. [Just one example: I was referred to a neurologist to finalize my diagnosis. He said he didn't know anything about how to diagnose my condition. It's a neurological disease. He's a neurologist. He didn't even perform a neurological exam. I had to wait approximately 3 more years before someone else did perform a neurological exam on me, which was positive.]

I also want to mention that ME, by name and scientific definition, causes pain due to inflammatory nerve damage. In other words, pain is an integral symptom of the disease myalgic encephalomyelitis. The word "myalgic" means causing or involving pain, while the word "encephalomyelitis" means inflammation of the brain and spinal cord. So the scientific name of this disease literally means that it causes pain due to inflammation of the brain and spinal cord. That means, if you genuinely have the disease ME - an enteroviral infection - the cause of your pain is known, and has already been fully and properly identified and diagnosed. No additional terms or acronyms required.

All that said. I have been unable to acquire or maintain a family doctor due to a combination of this unfortunate confusion, of my need for a narcotics prescription which automatically sends prospective doctors running, of being repeatedly refused on the grounds that my condition is "too complex" for the scope of one's practice, and of a climate of outright physician disrespect towards patients with ME that if challenged tends to result in those same physicians declining to maintain you as a patient.

Despite this, I have accessed treatments sporadically which have helped dramatically. When I had access to full nerve block treatments, it was the closest I've been to pain free in over 35 years. Cortisone injections gave me slightly longer-term relief. Botox injections helped reduce the migraine-like episodes of excruciating pain caused by the disease. A daily drug that acts as a migraine prophylaxis has also helped reduce these episodes. When I have access to adequate narcotics prescriptions, it is the only thing that can manage these episodes when they do happen. (For comparison, I've personally experienced the pain of a kidney stone. At its most extreme, the pain of an ME flare-up is off-the-scale 15 out of 10, far worse than a kidney stone, it is unbearable.)

When I am in full flare-up, I am far too sick to go to an emergency room. I need to have adequate strength narcotics on hand before it happens. Without a family doctor, I have no way of renewing a prescription, or of working with my doctor to find the right strength that will be adequate to take the pain away at its worst. That means, the next time it happens, I will be forced to endure it with no pain medication whatsoever, or with medication my pain will just laugh at because it is too weak.

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If you would like to read more about the disease ME, please feel free to visit The ME Society's website at www.themesociety.org