Were You Part of an Outbreak?

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, Nov 5, 2009.

  1. jasminetee

    jasminetee Member

    CFS is a homogeneous disese.

    Homogeneous means: 1 : of the same or a similar kind or nature
    2 : of uniform structure or composition throughout


    At about 5:45:15 on Day 1 on the CFSAC Meeting webcast, Dr. David Bell testifies: "Everybody is saying that this is a heterogeneous condition. Whatever happened in Lyndonville, a small, rural town out by Buffalo NY, was not heterogeneous. 212 people got sick, 60 kids got sick. That made me quite biased, I didn't see sporadic cases.

    When we reported this to the CDC in 1985, I talked with Gary Holmes and he said that it was mass hysteria. During the time we were talking with him, he was also dealing with Incline Village in Lake Tahoe, CA, but he never told us that.

    I'm very grateful for that because we knew from Day 1 that this was not Epstein Barr Virus and in those years they were thinking it was EBV."

    Dr. Bell then goes on to say that he thought some kind of infection had gone through Lyndonville. I don't recognize the name and I have no idea how to spell it. It's "Ucinia Intercalidia" or something like that. He said this was never published. He thinks it was a coinfection that was very important.

    Dr. Bell continues, "Dr. Ablashi found it wasn't HHV6, I knew it wasn't EBV, but the patients did have some improvement with Doxycycline. We need to look not only at XMRV but at coinfecting factors."

    Then Dr. Oleske says that children are often not included in the studies and Dr. Bell states that he is doing a follow up on the 60 children from the Lyndonville outbreak. So we are now finding out what their symptoms are 25 years later."

    Thank goodness for Dr. Bell! He makes the point that CFS is a homogeneous disease and that is what we need to get out there to the medical profession and to the public.

    I wonder if we had a lot more outbreaks like this that were missed because doctors were being told that CFS was all in our heads. You or I may have been part of large outbreaks, and now we'll never know.

    If Dr. Bell saw about 200 patients with CFS all near the same time, I wonder if many doctors around the U.S. were seeing that many patients who were presenting with symptoms of CFS and just writing us all off! Each doctor we saw may have also seen close to 200 other people with our symptoms and told all of us that these symptoms are in our heads and many of us had to see at least 6 doctors just to get a diagnosis of CFS. Does that make you angry like it does me?

    Many people here and I have said that we think we are the only patients our doctor sees that have CFS. If the doctors don't come right out and state that, it's implied that we are the ONLY patient they've EVER seen with the symptoms of CFS. In fact, they make us feel like we are anomalies. Since there are at least a million of us with CFS in the U.S. now then there had to be other unreported outbreaks.

    [This Message was Edited on 11/05/2009]
  2. denis321

    denis321 New Member

    FYI, it's Yersinia Enterocolitica. A gut infection Dr. Bell thought might be related to the rural milk supply.

    I think most docs would not have seen as many cases as Dr. Bell. Bell and Peterson/ Cheney are unique in that they all practiced in mostly geographically isolated rural areas where there were less medical practices, meaning they would see most or know many people in town. I know because I've been to both of these areas.

    This is less true of urban/ metro areas where even if there was an outbreak, people seeking medical care might get it at a variety of clinics. Meaning one doc might not see any cases or only a few and not make a connection (besides just biases).

    Some part of me does agree with Bell though that CFS might not be heterogenous. I think there is small group of people with primarily HHV-6 or EBV uncontrolled and these are the folks who get very well with current antivirals. But probably a large number of us have XMRV or something else going on and co-factors. The biggest deterrent in my mind has been that CDC criteria NEVER included flu-like onset as even part of the criteria when about 70% of people in most CFS studies note this. Dr. Peterson also spoke to this at the CFSAC presentation.
  3. jasminetee

    jasminetee Member

    Hi Denis-- Thanks for telling me the name, Yersinia Enterocolitica. It sounds like the entero viruses. Is it the same thing?

    I remember now reading that Dr. Bell thought it was from the local milk supply. Well, that may very well have been a coinfection.
  4. mbofov

    mbofov Active Member

    This is why I am not inclined to cut the CDC et al much slack for their early response. They had all this info about more outbreaks and just kept denying it all. The mentality is difficult for me to fathom.

    Osler's Web (my new bible!) documents several outbreaks in additoin to Lyndonville and Incline Village, but it also says there were big outbreaks in places like L.A., but just as you said, it was too spread out for doctors to make the connection; also, no good information was coming out of the CDC for doctors to use in diagnosing patients, and the CDC made no real attempt to conduct meaningful surveillance of the illness.

    I got sick with gradual onset CFS, it started with digestive problems (which were not diagnosed for 7 years until I found a competetnt chiropractor who did muscle testing), but just kept progressing inexorably to include my adrenal glands, liver, thyroid, immune system, sore throats, disturbed sleep, till finally PEM hit 14 years after I first started getting sick. I never had the neurological problems common to so many CFS sufferers, so I never quite identified with everyone else.

    However, I first started getting sick in 1985 - ring a bell? And, we were living in Oregon at the time and had taken a trip to Lake Tahoe (!) in the summer for about a week, sometime in the early 1980's. Neither I nor my ex-husband can remember exactly what year but it is quite possible that we were there in 1985. I think it was 1984 or 1985. I never before connected my getting sick to Incline Village, but now after the discovery of the retrovirus, I am beginning to wonder if I did indeed pick up the retrovirus in Tahoe, and that for some reason it expressed differently in me. In 1985 I had some severe stress relating to family issues (going back to childhood) and I always thought that's why I got sick. But maybe I picked up the retrovirus and the severe stress activated it in a certain way? So many questions.

    Your posts are interesting -

    [This Message was Edited on 11/06/2009]
  5. TeaBisqit

    TeaBisqit Member

    I was part of an Outbreak on L.I. New York in 91 that was one hundred percent covered up. When I got sick, my doctor said there was an outbreak and he was seeing LOTS of it in his office. He knew right away that I had CFIDS because of it.

    My mother called social security at the time and they said they were developing a special division just to deal with the CFIDS outbreak.

    She also called the CDC at the time and they said CFIDS was WORSE and more debilitating than AIDS or Cancer. They also said it was a VIRUS.

    Within a few months of this, still in 91, my doctor, whom I had been seeing since I was a baby, suddenly did a 180 on me and decided that CFIDS was a mental illness and not a physical one. He no longer wanted me as a patient and I was so stunned that he would change his whole tune after he KNEW this was a physical, infectious, biological outbreak. The media never reported on the L.I. New York outbreak at all. A few trickles of yuppie flu, that was it. And we never heard another thing about this outbreak or social security's "special division" for it. It was one hundred percent covered up. And sadly, those of us who got sick then, we all remained bedridden and seriously ill for many, many years. And no one cared.
  6. simonedb

    simonedb Member

    I had recurring mono in late 70s early 80s in midwest as teen young adult that remitted by 81ish and was then pretty healthy and strong until brief flu or something in '86. so many risk factors happend to me over the years it would be hard to say what the primary cause of my cfs/fm was but looking back I wonder if this trip I took to vegas and az in early '86 triggerd something too, as it seems in that area of US there was an outbreak and flying is a risk factor for catching things--I was really strong and healthy in a lof ot ways before that trip but when I got to Phoenix started having cold/flu sx that cleared up but then when I got back home I had a fluish pain in my spine that I had never had before tht cleared out within few weeks and was ok until 3-4 years later when had surgery end of '89 (another risk factor for triggering stuff)and never recoverd after that from chronic pain and fatigue.
  7. jasminetee

    jasminetee Member

    Wow! I've heard your story before tea, but it's always amazing to hear it again and it really fits here.

    Mary and Simonedb it sounds likely that you both were part of outbreaks. There is no way that stress is causing CFS or distress, of that I am certain.
  8. simonedb

    simonedb Member

    yea tea, I had heard your story before and its amazing. this whole thing reminds me of the movie "silkwood" w/ defreitas getting sick and all........
  9. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I live in a metropolitan area. I don't know if I was part of an outbreak.

    My sister is sick too, although she doesn't like ME or CFS and believes she has dyautonomia from the time of birth.

    I too had the blood pressure problems from the time I was five. This was way before the mid 1980s.

    But, my sister did get severely sick, with debilitating fatigue soon after 1987, after she got married. I just called her and she said she thinks the stress of the wedding was a trigger for that incident. She does not believe the cause of her illness is a virus.

    I have to be sensitive to her ego, so I am not going to try to convince her otherwise. I just send her something every once in a while. When I talked to her about XMRV, her response was, "That's not me because I have had this since I was born."

    Ok, I didn't push. But she went from doctor to doctor to doctor then, with all telling her she was depressed. But she didn't believe them. She finally found a doctor who said, "I don't know what you have, but I am willing to try to figure it out with you."

    She was then diagnosed with CFS. But remember, this was late 1980s. Being told you had CFS, meant "we can't help you." She had low fever and swollen lymph nodes. Eventually having surgery on one of the lymph nodes.

    Later, she became convinced she actually had depression, likely the whole time.

    Now, she says she has dysautonomia and not CFS.

    Back to the original question, I have no clue if we are part of an outbreak.

  10. jasminetee

    jasminetee Member

    It sounds like you're handling your sister just right Tina. What can you do? She sounds set on her beliefs and maybe that helps her get through this.

  11. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Well, we are very similar. We do lots of research, have strong reasoning skills, so we become very confident in our opinions, although we are open to hearing more information and other opinions.

    But in addition to this personality type, there is a little sibling rivalry. I am the big sister. I used to beat her at everything and do everything better. My parents wouldn't let me play the piano because my sister was taking piano lessons, and they didn't want me to show her up. The piano lessons was for her to build self-esteem.

    Now we are both adults. And there is no pecking order any more. I can't put her in her place to build my self-esteem by beating her.

    So it may be even harder for her to change her belief based on information I discover. So, I have to be sensitive.

    But, she is my best friend.