Does any body honestly think that CFS is contagous at some point?

Discussion in 'Fibromyalgia Main Forum' started by monom, Feb 5, 2003.

  1. monom

    monom Member

    I do not know,I think based on my reading and thinking,CFS is contagous and every body responds to it differently.

    Thank you for your comments as usual.

  2. Mikie

    Mikie Moderator

    I believe CFS/FMS and many other illnesses are genetically predisposed and can be triggered by many factors. If one of those factors is an infection, I believe it can be "caught" by another genetically predisposed person while the infection is in the active stage. This is apparently what happened in the instance of Gulf War Illness. The vets' family members, and even the family pets, often developed the same symptoms as the vets.

    I believe the mycoplasma infection which triggered my illness was transmitted to my by some soldier who was infected while I was out Christmas shopping in the crowds. I lived next to a military installation where they were vaccinating the soldiers getting ready to leave for the Gulf War.

    I received a short cycle of antibiotics when the active mycoplasma antibodies showed up in my blood test, but at the time, the docs didn't know that one cycle of antibiotics was insufficient to kill the mycoplasmas. These bacteria go stealth, invading cells to produce a chronic infection. My health started going downhill from then on.

    I can look back to childhood, though, and recognize symptoms which I now see as omens of things to come.

    BTW, it is for this reason that I would not give blood nor donate organs. I just read where two people, who received kidneys from a doner who had melanoma which was successfully treated, developed cancer. One died.

    Love, Mikie
  3. Mikie

    Mikie Moderator

    He was involved with the outbreak in Incline Village, NV in the 80's and it completely changed the course of his practice. There have been many cluster outbreaks since then.

    Love, Mikie
  4. klutzo

    klutzo New Member

    ...please read the book Osler's Web, which many libraries have. It is a fascinating look at the whole history of CFS, and covers this topic in detail, as well as several cluster outbreaks. Their conclusion is yes, it is contagious with repeated exposure. In otherwords, only close associates will come down with it, at a rate of about 2/3 of them within the ten yrs. following the onset. By close associates, they mean family and close friends. My sleep specialist used to have a booklet he handed out to those dx'd with CFS about how they should not share food, or let their kids or their pets eat off their plate, drink from their cup, etc.
    This topic seems to be considered politically incorrect now, and I never hear it mentioned anymore. If it is contagious, this is a dangerous omission.
  5. Plantscaper

    Plantscaper New Member

    I think, also, it is a combination of factors, which together produce the end result of CFS or closely related diseases.. I think one has a genetic predispositon, but some environmental event, whether viral, bacterial, physical AND/ or emotional stress, or chemical that pushes you over the edge into the chasm of CFS/FM which probably leaves you open to develop further diseases. I think that probably Mikie is right and there is an infectious period when you have an active case of some viral or bacterial illness when it can be contagious.. why else, would there be clusters in a short period of time in the same locale.. I think I inherited a predisposition-I think my cousin actually developed this disease first, then I and now my mother..and my 9 year old American Eskimo (my favorite breed) died last year very bizarrely but he had been in the same room where my mother was very sick, and exposed to me as well..and I have just read that this has happened other to other pets when exposed to RA/CFS.. When I look back, there has been at least two Co-workers who have either had the disease, then, or developed it later. AMELIA
    [This Message was Edited on 02/06/2003]
  6. popgun

    popgun New Member

    maybe but not FMS[This Message was Edited on 02/07/2003]
  7. TerriM

    TerriM New Member

    I tend to agree with Mikie . . . I think certain people are genetically predisposed to be vulnerable and definitely I think it could be contagious if you have Mycoplasma or a viral infection that is active. I have heard of the cluster outbreaks, but I had never heard of pets contracting the disease.

    My best friend has had CFS/FM for several years and I have wondered if I could have gotten it from her. We spent tons of time antiquing together and were always going out to eat together and sometimes shared dessert as a treat. I became ill after a surgical procedure . . . was fairly healthy before that, but did get vaginal yeast infections. I never recovered after the surgery, had to quit my career job and still can't work. My friend doesn't like to research her disease at all . . . I'm not sure why and she alarms me sometimes by saying things like "I've had tons of those 24 hour urine tests, too, but they never found anything" . . . it worries me because she doesn't even know what the tests were for. I, on the other hand, probably spend too much time trying to figure all of this out . . . sometimes all of the research can get to me and I have to take a break.

    I sure hope, without the other infections, CFS isn't contagious. I would hate to think that just by living with my husband and my pets, I'm putting them at risk.

    One other side note . . . I hate when I see CFS referred to as "Chronic Epstein-Barr" . . . I know many people with CFS have EBV, but not all. I've been tested for it and have never had it.

  8. ohmyaching

    ohmyaching New Member

    I believe it is contagious, but that this is not readily noticed because the disease takes so long to develop. I believe that the disease(CFS) slowly wears down the immune system. This may happen quickly depending on predisposition factors or over the course of years. If you have a healthy immune system it may stealthily accumulate over years depending on how well your body's defenses are until one day you become sick, your defenses are low and boom it moves in and takes over.
    This is just my opinion. Don't know if there is any evidence to support this.
  9. pearls

    pearls New Member

    CFS may indeed be contagious in that a person with certain genetic predispositions could pick up the disease from a virus. But I must set the record straight about Incline Village. It is not "a little village." Incline's population is 9952 and is butted up against other towns on the north shore of Lake Tahoe, so that the population of the area is larger than that of Incline Village. On the other hand, there WAS a cluster of CFS there.

    I, too, am nervous about the possibily of transmitting my CFS and/or my FMS to my husband. I would hope that the fact that I don't see my children and grandchildren often would protect them. Since the cause if these diseases (or disease) is not fully understood - with a number of doctors believing it is caused by a virus - I fail to see how anyone can flatly say that it is not transmittable, when we are just beginning to understand a little about it. Even if these diseasses started with surgery or an accident, these kinds of trauma may very well set the scene for infection.

    As to my husband, I asked a question some time back about my fears he may have acquired a milder form of my illness. He complains of widespread aches and pains. I've also watched my formerly energetic and constantly busy husband getting more and more tired. He used to go outside the minute he came home from work and work either on our farm or in the barn for hours, even into the dark. Now he goes out for an hour or so at most and comes in for the evening. He doesn't understand my pain, but I fear that's only because his is less than mine.

    Finally, this business of political correctness is bad enough, but when PC is applied to public health, I fear our country has really gone insane! Look what happened with AIDS. We had a chance to contain AIDS back in the mid-eighties, but we threw it away because everyone was afraid of offending a certain group in our society. Now it not only has killed thousands (or is it more?) of that group, but continues to threaten our entire society. Africa is absolutely devestated by AIDS, and its chidren are infected and/or orphaned in unprecidented numbers. When are we going to come to our senses?!

    [This Message was Edited on 02/06/2003]
  10. missvickielynn

    missvickielynn New Member

    is not just a river in Egypt.

    I agree that anyone who is truly concerned about CFS, whether you personally have been diagnosed or not, owes it to themselves, and the 500,000 or more people who have it, to GET EDUCATED.

    Klutzo's suggestion about reading Osler's Web is right on. It is a very difficult read.......especially if you are very ill with CFS. Excerpts can be found on the web,and are very enlightening, if frightening.

    You can also find info (documented research) on the web about the incidence of CFS in animals. Check it out. I have several articles saved about this, as I lost a pet from an unexplained CFS-like illness. I did not make the connection about her illness until I saw the research.

    Another thing on this subject of contagion and cluster outbreaks, and the politics of CFS.........if there are any of you out there who have not seen the documentary "I Remember Me"......make it a priority. I do not have Sundance on my cable, but after making 2 phone calls to my local library, they ordered the film for me. I just watched it last night. It made me extremely sad and extremely angry. To hear the doctors, who were involved in the Incline Village outbreak, and the Lyndonville, NY outbreak, tell the story about how the CDC made a laughingly halfhearted effort, and how the NIH flatly refused, to investigate these outbreaks, is chilling. These were stories that I had read about before, as I had also read about the CDC getting caught diverting funds set aside for CFS research. But seeing Kim Snyder's film, made these realities more frightening and maddening than anything I have ever read.

    The saddest thing is that, by and large, the CFS patient population is too ill and debilitated to do what is needed in the area of advocacy and lobbying for funds.

    I have been so ill for the last two weeks.......I have been in horrible pain computer is on it's last leg....I have received my first denial of SSDI.....I have less than $200 to my name......I have not felt like posting, or even answering my emails (with a couple of exceptions) for the last 3 days.......

    But I suppose, having just seen "I Remember Me" last night, and then seeing this topic here tonight.....I had to express my feelings about this.

    Yes....spending too much time trying to research these illnesses can be exhausting, and maybe even detrimental, insofar as that it adds to our stress load, and it takes energy that we often don't have, and sometimes we pay for the hours of research with increased symptoms.

    But it is my opinion that to remain in denial, and in "ignorant bliss" about this (which is what my family is choosing to do), is a cold slap in the face.

    Do a search on the web for the following:

    "Memorial List of those who have died from CFIDS"

    "America's Biggest Cover-Up: 50 More Things Everyone Should Know about Chronic Fatigue Syndrome"

    "True Costs of Ignoring Chronic Fatigue Syndrome"

    "Pets and CFS" or "CFS in Animals" or "CFS in Cats"

    There are plenty out there who are in the "camp" that to focus on these issues, and to write posts, articles, books and produce films about these to be a "doomsayer".

    Like I said........about denial......

    [This Message was Edited on 02/07/2003]
  11. Mikie

    Mikie Moderator

    The funds set forth for research were spent on other projects. My guess is that the government never wanted us to find out about the mycoplasma germ warfare project, so it kept stonewalling just like it did to the Gulf War Vets. To me, Dr. Nicolson is a true hero. He, as well as Dr. Cheney and his partner, risked their careers trying to get our illnesses recognized and research funded.

    Knowledge is power.

    BTW, I believe the proliferation of our illnesses may, in part, be attributible to blood transfusions and organ donations.

    Love, Mikie

  12. klutzo

    klutzo New Member

    This had nothing to do with the excellent topic of this thread, but I am burning with curiosity after consulting my world atlas and coming up empty.
    Please do not be offended by this question from yet another geographically-challenged American! I am curious and honestly do not Lapland the same country as Finland or is it a region in Finland?