At this juncture, with the science in an embryonic state, I am in favor of the most inclusive definition. The only problem with non-HIV AIDS is that “Deficiency” isn’t exactly right, though the disease can clearly progress to an immune deficiency, just not a devastating one like endstage HIV. Dysregulation would be a better word. However “Acquired Immune Deficiency Syndrome” unrelated to HIV, is close enough for government work, and the name evokes what it should. Before the causative agent of Hepatitis C was identified, it was clear that there was another infectious virus that caused hepatitis that had a different clinical course than either Hep A or B. This is exactly analogous to that. We will eventually have a laboratory profile that is inclusive of all the cohorts, or maybe I should say, factions.
Neuromyasthenia isn’t a bad name. It takes into account the full history of the phenomenon, but the overemphasis on muscle is inappropriate for many and it leaves out the immune problems. It also brings “the vapors” to mind for me for some reason. I haven’t heard a perfect name. Another new acronym won’t take at this time, even if accurate, because everything is in such a state of flux. It will all be easier when the causative agents are identified. For now, non-HIV AIDS explains it in very few syllables. Even a doctor should get it.
AIDS has case surveillance criteria that include “AIDS-defining conditions”. Revised Surveillance Case Definitions for HIV Infection 2008. If you are HIV positive, whether you get PCP or Kaposi’s Sarcoma, it is still AIDS. Whether you have HIV dementia or not, it is still AIDS. It is the same for us, whether you have HHV-6, Lyme Disease, CLL or ASD.
I don’t like any of the existing case definitions, though most full-blown cases are caught by the Canadian Criteria. Using us, as examples; I didn’t have a viral onset and I don’t have sore throats, fever, adenopathy. I got sick post-partum with various neurological symptoms which were all transient. I was always hyperimmune. I worked in the ER for 16 years; I was exposed to everything and never caught anything. I’ve had an influenza a few times, including Swine Flu, which was no big deal, but that’s it for viral illnesses, other than childhood illnesses, all of which I had naturally before my early teens. However, I had persistent Babesiosis despite lots of treatment, so that’s pretty immune deficient. I have never met CDC criteria. I meet Canadian Criteria (6/6), but didn’t for the first decade of my illness. As for ME? I didn’t have PEM for over a dozen years, though it’s bad now, and I still don’t have problems with cognition or memory. I have sensory deficits. I have a positive Babinski and Rhomberg. I have mini-clubbing that started before my first crash. I have low titers of autoimmune markers, sometimes. I am XMRV positive. I’ve had negative nerve conduction studies. I have been given many diagnoses over the years including chronic Lyme Disease, fibromyalgia, Crohn’s, PTSD, dysautonomia, arrhythmias, peripheral neuropathy, Raynauds, atypical migraines, intestinal migraines, pain syndrome of unclear etiology, most recently CFS. I have recurrent hypertensive crises. I have a sleep disorder from being an ER doctor, predating my illness by many years, but it’s much worse now. I am probably an Ehlers Danlos variant. I have become more flexible with each major exacerbation of my illness. My wingspan is greater than height, though I am short. Ritchie Shoemaker says my genes are “poison”, but Ali “drank” the lesser of the poisons. What do you think I have?
Ali is more classic CFS, though she also had an onset that was related to a major hormonal shift, and her illness responded to oral antibiotics for years. She does not meet CDC criteria. She does meet Candian criteria, except when she doesn’t. No sore throat, fever, nodes. She catches viral illnesses very lightly; barely registered Swine Flu. She has had inflammatory skin stuff since she was little, predating illness. She has a history of treatment resistant Lyme Disease, atypical migraine, a mild cerebral vasculitis and leukocytoclastic vasculitis twice from PICC lines. She has POTS. She has a little brain fog that comes and goes, but is really sharp mostly. Little sleep issues, but not bad. She has PEM, but didn’t always. She has a little MCS. Not much pain. She is XMRV positive. Do you think we have different diseases from each other? From you?
There is aggressive prostate cancer, Parkinson’s Disease, Multiple Myeloma, ASD and Marfan’s Syndrome in our family, which is in no way an outlier. The surveys we are receiving look compelling for demonstrating both the genetic and infectious pieces, as well as associated conditions. Thank you to everyone participating. These informal responses are helping us to determine the right questions and how to proceed. Please keep them coming, even if you are an isolated case. Our intention is to proceed with a formal study. There will be a secondary mailing to fill in the blanks and provide consent for publication. If you’ve sent in a survey, please stay tuned over the next few months for additional requests for information, and if you change your email address, let me know.
It is completely outrageous that the epidemiology has not been formally studied by our government agencies over the last decades, while so many people were getting sick. How did they let this happen? How come the Center For Disease Control has never even looked? An obviously infectious disease spreading through the population for decades. Whole families affected. But they buried their heads in the sand, because it wasn’t straight forward. It was easier to think the patients were lazy, crazy and faking. After all, they were an unusually labile bunch, hard to deal with, quite hysterical sometimes, and so fixated on their symptoms, which any good doctor could tell, couldn’t be a real disease. No wonder the people responsible can’t let it in. Imagine realizing that you were one of the people who allowed an incurable infectious virus to invade a second and third generation, ruining the lives of millions of people. No way to contain it anymore. The health of the species affected on an evolutionary scale. Just because you were wrong. That could make for some serious denial.
So, we will study the family piece ourselves. With talented, sick volunteers. Without funding. For free.
God loves to help him who strives to help himself.
Aeschylus ~500 BC