Is CFS Infectious?

Discussion in 'Fibromyalgia Main Forum' started by Gretchen12, Feb 20, 2007.

  1. Gretchen12

    Gretchen12 New Member

    Just wanted some thoughts on what members of this board think regarding the infectious nature of this disease.

    I have a new granddaughter and would not want to put her in harms way.

    If this is viral in nature, then it would seem to me that it is certainly somehow infectious. Seems that I read somewhere (possibly Osler's Web) that Cheney & Peterson do believe that it is.

    Also, what about Para Influenza Virus 5 that is discussed at National CFIDS Foundation website?

  2. spacee

    spacee Member

    My granddaughter will be born in a few weeks. It scares me so much. She will live out-of-state and I am glad for that reason.

    Michelle Dopson at Chisholm Biological Labs where Mycoplus is made told me just the other day to take precautions. She meant by that to not kiss them. She said that all these viruses shed.

  3. JolieLuLu

    JolieLuLu New Member

    Encourage your new grandbabies to be breastfed.

    Nothing is more important than what "our" infants are fed. The gut is where our immunity begins!

    Breast is Best~

    Love and light,

  4. ravenpaige

    ravenpaige New Member

    Is CFS infectious?

    I see not many have answered this question...I think it's a real hot potato.

    For what it's worth, here's my take on it, and only time will really tell what the correct answer to that is.

    1. CFS is obviously NOT highly contagious. If it were, then, allowed to go unchecked as it has for 20+ years, almost everyone would have it. That is clearly not the case.

    2. There is certainly some data to suggest that the suseptibility runs in families. This is not surprising, since almost all pathogens have a hereditary factor to them. Some people are naturally "immune" to polio, or bubonic plague. Nothing is 100% contagious.

    3. If, as current thinking and very early studies (i.e., Montoya) suggest, that a member or members of the herpes virus family is in some way responsible for CFS, then it may be difficult to shield anyone from the pathogen. Most mombers of the herpes virus family are very commonly found throughout society. HVS-1 and HHV-6B clock in at about 90-98%, while EBV runs around 90%. In other words, everyone is eventually exposed to these through normal contact in society. So to completely avoid these would mean to completely limit your contact with normal society. Not something I'd wish for my grandchild.

    4. If CFS *IS* caused by a very common but rarely activated (or reactivated) virus, then the best choice for protection is not isolation, but instead, to find a good treatment or a cure.

    5. Finally, as was mentioned, most children draw a natural immunity from their mother, which is reinforced with mother's milk. I also believe that teaching our children to take care of their bodies through good nutrition can go a long way toward keeping them healthy.

    6. I probably have a very slanted opinion of this, because this disease seems to have hit myself, one daughter, and two sisters. This doesn't present a very good argument to me that CFS is not, in some way, transmitted. My mother often asks "but if it's hereditary, why didn't anyone else in our family ever have it?" Big, catholic families on both sides, running back to big Irish families. I don't have an answer to this.
  5. Slayadragon

    Slayadragon New Member

    I have no idea whether CFS is contagious.

    I do have the suspicion that the predisposition for CFS is hereditary, although there is no real evidence for this either.

    It certainly seem to run in my family.

    My maternal grandfather seems to have had it since his early 20's until his death in 1984.

    My brother came down with it in 1987 and still has it.

    I acquired it in 1996, and had not seen my brother for quite a long time before this.

    What I wish is that someone had told me that I might have the predisposition to CFS and that I thus should be careful with my health.

    I don't know if I could have prevented ever getting a head injury in my life. However, had I not gotten pregnant while still suffering acute effects of the injury, I might not have gotten the disease.

    (Both pregnancy and head injuries seem to be triggers for CFS.)

    I would guess that if CFS is contagious, those infants who have the genetic predisposition for it might be more likely to catch it. The idea that people with CFS should avoid being around their own grandchildren is an extremely sad one, though.

    I wish we knew more about this disease.

  6. SleepyMama

    SleepyMama New Member

    Myself and my Mother both have CFS. My brother seems to have "related issues" which are undiagnosed and not exactly the same. My son has a very serious mitochondrial disorder (genetic) which I understand may or may not have a link to CFS.
    I beleive that CFS certainly has a genetic factor as far as suceptibility goes. I often wonder about the possibility that it's transmitted on the mitochondrial DNA (anyone here have a father with CFS?)which passes unchanged (with the exception of spontaneous mutation) from mother to child.
    I beleive that whatever virus/viruses that seem to be related could be the "straw that broke the camel's back" so to speak.

    Should you deny yourself and your grandchild of a normal relationship with each other? I wouldn't. I agree that baby should be breastfed if at all possible. Perhaps other precautions could be taken to strengthen her immune system? I firmly beleive that taking steps like removing toxic chemicals from the home (found in most cleaning products, personal care products, etc..) and getting a well balanced diet with high-potency multi-vitamins, eliminating procecced sugar and stripped grains from the diet can all help greatly in improving the immune system so it can fight these things better on it's own.

    Can I ask if this baby is your son's or daughter's? If it's your son's child, she won't be inheriting your family's mitochondrial DNA which could reduce the heredity factor...if my theory's at all correct (But then again I'm not a doctor lol)

    I hope that you (and your granddaughter's parents) are able to make a decision/find a solution that allows you to have a normal, close relationship with her. I know my kids are in such a wonderful placeto have an amazing relationship with my mother.
  7. mcondon

    mcondon New Member

    As the father of an 8-year old daughter, one of my bigger fears is that my daughter will come down with CFS at some point.

    Cheney's answer to my concern is that, in his experience, CFS is contagious during the "acute" phase, which corresponds to the first six months of illness in "viral onset" patients. He thinks that after that, it is not contagious. He thinks the disease runs in families because of a genetic predisposition. He said he thought my daughter has about a 10% chance of coming down with CFS in her life, or about 10 times the population average.

    Personally, I doubt the disease is particularly contagious. After all, many of us come into contact with others on a regular and repeated basis who don't come down with this. I have worked with the same people for the last 8 years of being ill, and not one of them has gotten sick with CFS or anything remotely similar.

    By the way, Cheney's recommendation for prevention in children with a genetic predisposition is to feed them as healthy a diet as possible throughout childhood.
  8. ravenpaige

    ravenpaige New Member

    You said:
    I often wonder about the possibility that it's transmitted on the mitochondrial DNA (anyone here have a father with CFS?)which passes unchanged (with the exception of spontaneous mutation) from mother to child.

    I found this very interesting. My father doesn't have CFS; however, he has had the rather amazing history of surviving two bouts of non-Hodgkins lymphoma...once when I was about 5-6 years old, then again when I was about 30. He had been cancer-free for about 20 years until this last fall, when he was diagnosed with lung cancer. He's now about 74, and yes, he has smoked a pipe for years. (Stage 3A, non-small cell...I'm very worried about him...but we'll see if his luck still holds).

    I don't understand all of the biology about it, but I know from reading Osler's Web that the initial outbreaks of CFS seemed to be accompanied by a striking increase in non-Hodgkin's lymphoma, a fairly rare form of cancer.

    So...does this all fit together somehow? I'm still asking questions, with very few answers.
  9. spacee

    spacee Member

    Very good, useful information. Mine is my son's daughter...for that question. She will definitely be breastfed. The parents never frequent fastfood places but as with most of us probably lack some fruits and veggies. But I imagine they will be "on course" with her.

    Really, thanks again for responding. Very heartwarming.


  10. Slayadragon

    Slayadragon New Member

    I _think_ that a while back I read on the board that it's the first six months of their lives when infants with a genetic susceptibility to CFS might be especially susceptible to "catching" it.

    I have no idea if this theory has any face validity depending on other info known about infants. Perhaps Jolie might have an idea?

    SueJackson has two kids with CFS and has consulted with Dr. Bell (who specializes in this topic). Those interested might want to go back and read her posts. (She hasn't posted terribly often, and thus those posts probably would be pretty easy to find.)

    Recent studies seem to suggest that good childhood nutrition is a key to living a long and healthy life with regard to all diseases, all the way up to one's 70's or 80's or 90's or beyond. Of course, it's easy for me to say that kids should eat right, considering that I don't have to worry about actually feeding any of them.

    [This Message was Edited on 02/20/2007]
  11. Gretchen12

    Gretchen12 New Member

    Thank you all for such thoughtful replies.

    I do believe that we have a genetic predisposition to this disease. Looking back, I believe my mother and my two aunts had it. They all died young. They were so spirited and gifted, but always seemed to push themselves beyond their physical capabilities because they loved life so much.

    Isn't it true that the mitochondria is passed down on the maternal side almost exclusively?

    Glad to know that Cheney & Peterson feel it is during the first six months of illness that it is most contagious.

    Sorry to say that my granchild is not being breastfed. It would be impossible for my daughter to do this with her schedule.

    I really want to get strong enough to move to Austin to be with her more. Children need family. But,as it is now, I can barely take care of myself. I hate this disease which is stealing my life!

    Thanks again,

  12. wrthster

    wrthster New Member

    I think most people with CFS have many co-infections, so technically I guess one could say it is potentially infectious. However, most people are far more a risk to you than you are to them.

    If a person has a normal immune system than it is my opinion that they will not catch anything you may have. Most CFS people have a comprised immune system which makes them really the one at risk!

    But I am not a doctor, and it is always possible to spread things back and forth. But look at Candida, most people with a health immune system can fight it off. It is the one's with a poor functioning immune system that can not.

    I don't know if I did a good job explaining this, but I hope it makes sense.

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