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Can you trace your illness back to about 1980?

Discussion in 'General ME/CFS News' started by Stormyskye, Jan 13, 2010.

  1. klutzo

    klutzo Senior Member

    I can give you the exact date I became ill. My alarm went off for work and I woke up on the morning of January 9, 1986 and could not turn my neck properly due to stiffness, both arms and legs were numb, and a whole bunch of my hair had fallen out all over my pillow. This happened just as I was recovering from a cold virus that had knocked out everyone in my office.

  2. Otis

    Otis SeƱor Mumbler

    CFS since 79

    I just ran across this tread and thought I'd reply, albeit late, since my onset was so close to '80.

    To the best I can figure I came down with a significant bout of fatigue in 1979, give or take a year, at the age of 14. I was blamed on sinusitis (were infected repeatedly) and activity induced asthma. I expect I had a virus playing havoc on the immune system. I was able to play high school football but was never able to get aerobically fit.

    Then I had a remission which lasted until the '90s and I have a very gradual onset. By '95 had true CFS and got a Dx in '01. I functioned pretty well for another decade with despite a constant decline until it all unraveled last year after pushing so hard the push/crash cycles were overlapping and PEM was a constant state.

  3. serenity

    serenity Senior Member

    yes, mine too was likely in the 80's. why?
    oh wait i went back & read & i see your theory.
    well, for me, i had a car wreck when i was 18 (fibro is my primary diagnosis)
    i'm 42 now...
    that makes it 1986 for the year of my injury.
    but i am not sure whether i felt tired before that, i was young so it's hard to say...
  4. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs

    I am pushing 60 here and have had symptoms since childhood. It was around 1979 that I had an infection that almost did me in. When I heard of HIV, I got tested several times thinking that I must have it. I have lived a pretty healthy lifestyle and took any supplements that I heard of that would give me energy. I wasn't diagnosed with CFS until in my 50's'

    My dad died at age 39 and my mom was in her 70's.

  5. serenity

    serenity Senior Member

    that is too young to lose your dad Glen, i am so sorry. sorry really to all of you / anyone who loses a parent so young. i am so fortunate both of mine are still alive.
    no one around me has symptoms.
    i had strep & ear aches all the time as a child but never thought of them as significant, just figured my wreck caused my illness.
    but i was tired before that, so i'm not sure...
    i get sore throats still but chalk it up to allergies.
    i really don't know, it's so hard to talk to docs - this has been my whole life & they talk to you as if you have something to compare illness to. i have no comparison, i dont' know if i was ever healthy.
  6. jewel

    jewel Senior Member

    long post-- sorry so late to this interesting thread

    Hi-- Another person to chime in months late to this thread, but also one to have begun symptoms in the mid 80s. Sometime about 1985 or 1986 I caught a strange, lingering flu-type virus. I kept going to Kaiser, and they kept telling me that I had a virus that would go away on its own, if i would just give it time (and stop bothering they did not say that...). This virus was so debilitating-- in addition to the traditional flu-like symptoms, I would have episodes where my skin hurt so badly that I could not have sheets touch it. My then boyfriend (now husband) also had this, and I felt we were passing it back and forth, getting better and then worse. Ironically, before we met he had lived many years in Reno, Nevada, though it may be reaching to think that there was some Incline Village connection. He improved, but I cycled between feeling sick and feeling that I was improving.

    Soon after, I was rear-ended in a rather nasty car accident on the 405 freeway in LA. So, 2 hits, virus/accident. About 6 months later, I switched health insurance companies. The new doc tested for Mono and thought it was strange that I had such high antibody titers for an infection that should have been gone. A few other people at my place of work had been diagnosed with chronic epstein barr virus... But, I was young and relatively fit. Overall, I got better, but still had episodes of feeling fluey-- especially the burning skin sensation around my joints. Actually, to this day, this is a sign to me to rest, rest or impending crash.

    Later, in the 1990s, after the birth of my 2nd child, the entire family caught another very bad flu... I have never been completely well since, lucky enough to be able to work, though not too much else. Years later,after much testing, I did get an FMS diagnosis (due to the post whiplash history). No one would listen to the fact that before that I had a terrifically bad infection. And yes, I have had testing with high EBV, CMV, Mycoplasma Pneumonia titers etc also... I probably fit the criteria for CFS also, but now I eschew doctors and dxs unless absolutely necessary.

    The disconcerting thing for me recently is that my now 16-year-old daughter has been complaining of fluey, joint pain, etc. especially when it is raining or about to be rainy. This is a low-energy, sweet, slightly spacey, artistic kiddo who I hope to God or the muses or any positive powers in the universe does not have FMS or CFS or is not in the process of developing it. She loves the rain, absolutely adores the cleansing feel and the light and sparkly look of everything. She keeps saying she would like to move to the Pacific Northwest to college, and I hope that will be possible for her.

    Re family history-- my mother was ill on and off all of my childhood with largely undefined maladies. She would catch every cold,flu bug going around, had diabetes, and had some kind of chronic pain condition. Maternal grandmother, rheumatoid arthritis. On dad's side, many people with cardiomyopathy as well as severe allergies.

    I do think some of my sensitivity to stimuli, allergies, and episodes of mild brain fog have been with me prior to any definite illness onset. I am waiting to see what happens in the next few months with xmrv research to decide if I should pursue testing for myself and family.

    So what was it about the 80s-90s? Is there more than anecdotal evidence of a rise in CFS orFM cases? This is the time frame for the exponential increase in autism as well...

    Sorry for the long post... But, again, what was it about the 80s? :confused:

    Cheers, Jule
  7. fred

    fred The game is afoot

    Mono 'forever' from Jan 1984. Big crash May 2006. Possible predisposition (father had same symptoms).
  8. alice1

    alice1 Senior Member

    Symptoms started in 85 became full blown after a host of vaccinations for travel in 86.
  9. fred

    fred The game is afoot

    Isn't it amazing how so many people can remember the exact time and date, where they were and what they were doing when it started? It must rank alongside JFK being shot for ME people.
  10. Carrigon

    Carrigon Senior Member

    PA, USA
    I have a vaccine link, too. I got sick with Fibromyalgia around 85. I suspect it was from my first encounter with aspartame. A few years later, when I was in college, only able to go part time cause I really wasn't okay, the college forced me to get a polio shot. They claimed I was missing one on my records, which wasn't true, but I couldn't prove it. Back then, the records were handwritten, not computerized, and someone didn't write it down. The college blackmailed me into getting the shot. They said if I didn't do it, I wouldn't be allowed back into school and not just their school, any school. I was just about twenty years old then. I loved going to college and I was getting good grades. I didn't want to do the vaccination. I had a bad feeling about it. But I ended up giving in and doing it. After I did the shot, my health went downhill the entire year until I caught something that January that gave me full blown CFIDS. I think the shot had alot to do with my becoming completely disabled in 91.
  11. leaves

    leaves Senior Member

    I have symptoms since birth ( in the eighties) and am xmrv+
  12. vdt33


    Sudden onset in the Fall of 1975. My mother had a bad case of ME/CFS. My son and husband have symptoms.

    Sometimes I wonder if I had ME/CFS since birth. I just didn't succumb until a period of intense stress -- divorce, surgery, etc.

  13. liverock

    liverock Senior Member


    The whole history of polio vaccination appears to be shrouded in cover ups and maybe it has contributed to CFS. The 1980's would be 20/25 years after the mass vaccinations for polio started, and the research on the dangers and side effects of vaccines was virtually non existent in the 50's and 60's.

    From what I can gather at the time there appeared to be a panic to get a vaccine on the market before an epidemic started and this is still the way today.

    There have been accusations made about a monkey virus contamination by a virus called SV40,which the manufacturers knew about but did nothing to remedy, probably for economic reasons.

    This is a more comprehensive history of the story.

    The SV40 contamination occured in vaccines administered between 1955 to 1963 and it is estimated millions of US citizens had the shots during this period.

    Despite the polio vaccines from 1963 onwards no longer containing SV40, testing on populations reveals that it is still active and is being transmitted from mother to child and sexually as well.

    Maybe we should all be trying to remember if, and when we had a polio shot:eek:
  14. aiden424


    I got sick April 16 1986. Twenty fours years a go yesterday:{

  15. jray760

    jray760 Guest

    Nica Living

    This sounds so much like my life I could have written the reply myself. I can't get any care here, nobody really understands. Your life in Nica sounds wonderful. What town are you living in? Where would you recommend someone like you (and I) live in order to have a quiet life and still be able to get some treatment?

  16. jewel

    jewel Senior Member

    Just incredible articles (no, they are credible, but amazing and thought-provoking). Thank you for posting these.
  17. oerganix

    oerganix Senior Member

    I live in Granada. Where are you?

    There are many smaller towns nearby that are quieter and would require a noisy bus ride, or a more expensive taxi, to see a doctor or clinic. There is a doc here who was educated in Miami and speaks English, so if I decide I need a doctor's help, I'll try to see her. When I'm up to, I explore some of the "pueblas blancas". They are at a higher altitude, so cooler as well. There is one, Masetepe, that I have yet to investigate, but they grow shade-grown organic coffee there, and that is my fantasy place to live. There's more about my life in Nica in Koan's "little house" thread, under "community". Includes the bad and ugly stuff, along with the good.

    But, since I am generally "healthy" other than having ME/CFIDS, I haven't yet needed to see a doc here, other than getting that Rx for naltrexone, which I had to get from India.

    FWIW, I'm doing the LDN (low dose naltrexone) treatment right now and I feel it is helping a lot. See the LDN thread under "treatments" if you, or anyone, are interested. I estimate I'm about back to where I was before last December wiped me out. I'm now scheming on how to not be in Granada for next December. I think I've also developed some better coping strategies since then, and with the LDN treatment, I'm less sensitive to noise and other overstimulation, too. I'm back to walking for a half hour or more, every other day, without PEM, having less brain fog. I just finished a month's antibiotic course that has taken away the back pain I had then. And LDN has so greatly improved my sleep that it would be worth it for no other reason. Plus, there's the dreams that went away with ME, and now they're back...some of them pleasantly's affecting all kinds of hormones in a good way, too.

    Anyhow, jray, welcome to the forum.
  18. MNC

    MNC Senior Member

    Many of you will not know about something called the "Toxic Oil Syndrome" that happened in Spain in 1981. ( It was something massive, hysterical, people were dying and fallin very ill all over Spain for unknown reasons. I was 16 years old and we were in total panic, more than with the Swine Flu, but we didn't even know what it was. It was first called the "Atypical Pneumonia", because it usually started by the respiratory system, but they never found any bug, so we were all waiting and waiting for them to find the bug as we now wait for XMRV to be real and confirmed.

    After months of hysteria (and lots of deaths) they said the cause was some oil that had been sold for home consumption and was toxic. That some guys were selling industrial oil for eating. They said what brands were toxic and the epidemy stopped gradually. But 29 years later still lots of people remain totally destroyed and sick for life, and most of them don't believe that oil was the cause. They say it doesn't make sense to them because the whole family ate the oil and only one or two members got ill or died.

    Some doctors, researchers, said that it was absolutely impossible for the oil to be the cause. They blamed it on the American Air Force Base near Madrid, where the first cases started among American pilotes and the Spanish population, and the experimental use of some pesticides made by Bayer, the German pharmaceutical. They say that it was pesticides over tomatoes for some secret purposes. The accusations go to the Spanish Government hidding some sort of affair (even war or nuclear affairs) along with the American Government and also the German Government who knew about it all.

    In any case, 29 years later, nothing is clear. I know a woman whose whole family was affected. Some died in her family and others got ill. Ill forever and progressively. And when we talk about it I can't believe how similar it can be to many features of CFS. The surviving patients never received proper help. Never received proper compensations or explanations. They still wait for their money. They still doin't have a doctor who will coordinate all their different illnesses. They have been abandoned and neglected in many ways. Many of them, thousands, turned to be totally destroyed forever, with terrible nervous system diseases, unable to walk, talk, blindness, mental retardation, everything on Earth...

    If this was in 1981... maybe it's vaccines, pesticides or some sort of toxic after all that started around those years of super industrialization.
  19. oerganix

    oerganix Senior Member

    MNC, I have wondered about this sort of thing, too. The "flu" that put me down happened in the summer and was not like any "flu" I ever experienced before or after. I was also exposed to organophosphate poisons and suffered anaphylactic shock a couple of times due to that exposure. I used to bicycle and jog in a park where I could sometimes smell the herbicides and pesticides. At high temperatures, these chemicals behave differently from their "safe" environmental temperature, as in during a fire or unusually hot summer days. They vaporize and become even more toxic.

    Many of the symptoms we have in ME/CFS resemble nerve damage by organophosphate poisonings...all of which are derived from agent orange, the defoliant the US military used in Vietnam. Agent orange was contaminated with dioxin, a powerful carcinogen. 20 million gallons of agent orange were sprayed on Vietnam alone, and after the war Monsanto and Dow quickly found other markets for their poisons, mainly in agriculture and parks and golf courses. In the US, golf courses are a major source of ongoing water contamination by poisonous chemicals. Dioxin settles into the body's fat and never leaves. The brain is the fattiest part of the human body.

    The wiki article on organophosphate poisoning includes this:

    Other studies suggest a link between chronic low level organophosphate exposure and neuropsychiatric and behavioral effects. Jamal has suggested the term COPIND, or "Chronic Organophosphate-Induced Neurologic Dysfunction,"[9] and Abou Donia the term, OPICN, or Organophosphate-Induced Chronic Neuropathy for describing these effects.[10]
    Low-level effects on the developing brains of fetuses, infants, and children have been documented as well.

    (My underlines)

    In California where I was living at the time I got sick, we were sprayed from the air with malathion, an organophospate insecticide, because the citrus industry was threatened by med fly. I remember the ag agencies going from home to home, taking all fruit off peoples' backyard trees and spraying their chemicals all around, prior to the time we were sprayed from the air, against our political wills. Men in haz-mat suits, looking like spacemen, would show up and tell you they were going to do it. People who resisted were arrested, or threatened with arrest.

    From wiki:

    Potential effects of environmental organophosphates

    The use of the organophosphates in aviation lubricating oils and hydraulic fluids and its impact on health and flight safety is a matter of some debate. Airline employees set up a non profit group in 2001 to highlight their concerns called the Aviation Organophosphate Information Site (AOPIS).[4] Additionally, the Aerotoxic Association was set up in 2007 by a former airline pilot to offer support to aircrew and passengers who suffering with Aerotoxic Syndrome, a condition caused by exposure to contaminated bleed air.

    Purdey (1998) suggested that organophosphates, in particular Phosmet, induced the transmissible spongiform encephalopathy epidemic of BSE.

    A European Union food safety Scientific Steering Committee examined the evidence and did not find a link.[6]\

    As opposed to the two examples given above, the toxicological literature on persistent chronic toxicity from acute poisonings or long-term low level exposure is quite extensive. The phenomenon of OPIDP (organophosphate induced delayed polyneuropathy, also OPIDN), which causes degeneration of the peripheral nerves, has been noted to occur several weeks after exposure to some organophosphates.

    (colors and underlining are Wiki's)

    I've also considered the possibility that this is why the governments of the US and UK have worked so hard against finding the cause(s) of CFS. They may already know the cause, and based on past lawsuits, don't want to pay out damages for accidental or intentional exposure of civilians and military personnel.

    The genetic differences being found in PWCs might also explain why some of us are affected so badly by these chemicals and others less so.
  20. Cort

    Cort Phoenix Rising Founder

    Circa 1979-1980 - Santa Cruz - right across the mountains from Organix who was in San Jose.

    Nobody had even heard of CFS back then.

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