You know I have wondered this myself. I have had fibro for 20 years but not CFS. Two and a half years ago I married a man I met on this forum with CFS.
Now, I have my symptoms and his, the severe fatique was never a part of my fibro. Some days, like today, I feel like surely I must be dying of something unbeknowst to me as I am just lifeless. My body feels heavy, I can hardly breath, it is so energy draining to do so.
Now the funny part is, that he did not have fibro and now he does.
I often wondered if I got mine from a neighbor who I use to visit next door. She was a younger lady then I, and quite heavy, she would tell me her symptoms and she was on disability. I remember commenting then to someone that I wondered was she really ill or just lazy.
Since I often drank tea, etc. out of cups from her home I wonder too if it could be.
No,don't worry needlessly over this.I have been married 6 years and he nor anyone else I am in contact with have caught this.The more you read you will see many started getting symptoms early in life and they worsened as they got older.Please do not let this ruin your relationships.
If you look up "CFS outbreaks" You will find that there are recorded outbreaks, most noted is Incline Village, although there are many others.
Does that mean it is contagious? Looks like. Except people will live together and it does not seem to pass to others in same family. Although, I don't know if it is CDC or if it is CFIDS Association, but one say CFS people should not donate blood.
It appears genetics plays stronger role.
So question could be, does it take a genetic weakness combined with contagion?
Very interesting, msbsgblue. Thank you for sharing.
If CFS/fibro is caused by say, a class of viruses, with different strains, some strains may be more contagious than others. So some people may find that it seems they caught or passed it to others, while other people find that theirs doesn't seem contagious.
Interesting idea that CFS and fibro are similar but different, and could be matched to different infectious agents. Makes sense.
I've had FM/CFS for well over 20 years. I've lived with a couple different people, daily shared glassware and all else, and no one ever caught it - so IMO it's not contagious (I also think FM and CFS are the same disease). The only people I know that have it are blood relatives.
is that it is contagious under the right circumstances, since it is a condition of immune deficiency which can be proven with immune workups (see mine). That will lead to dx of high titers on various viruses and bacteria. Besides, Lyme borreliosis is highly suspect in M.E., although difficult to prove, has been isolated from tears, semen, breast milk, etc.
I wish I could feel like I'm not contagious or dangerous.
As you can see, nobody really has a definitive answer. We just don't know. Lots of guessing however, and the following is my best guess (at least for now).
My perspective - CFS/FM is a result of trauma. This trauma in turn results in varying degrees of dysfunction of the brain and nervous system. This in turn leads to a domino like effect where the major regulatory mechanisms of our body (endocrine, immune, digestive, detoxification, etc.) begin to lose their functional capabilities.
The degree of symptoms anyone experiences I think corresponds to a great degree how much these regulatory mechanisms have been compromised.
I think in some cases the trauma can be a result of pathogens (viruses, mycoplasmas, etc.), and theoretically contagious. Some pathogens (such as epstein barr virus for example) will be enough of a trauma for some people to develop CFS or FM. This will not happen with most people however.
Just my 2 cents worth. Also, I believe I have CFS because of a genetic predisposition and a serious head injury at age 15.
P.S. As you read on this board, it's quite amazing the remarkable variety of traumas that people share as the starting point of their current health difficulties. Just a few include:
Lyme, head injury, viral infection, mycoplasma infection, whiplash injury, surgical trauma, chemical exposure trauma, long-standing stress conditions, vaccinations, antibiotics exposure, etc. The list seems almost endless.
[This Message was Edited on 01/11/2008]
I dated the wrong guy. In January of 1991, I dated a guy who had an unusual sore throat. Within three days of only deep throat kissing, I was infected. The cognitive symptoms started, all the other symptoms kicked in, by the seventh day, I was full blown CFIDS. I ended up bedridden for the next two years. In my case, it was definitely contagious.
I also have a friend who got it from a drummer she dated. He was sick with it and within a short amount of time, she got it off him.
There is some infectious agent out there. But I think it only hits you if you are genetically susceptible. I also think it is only contagious during the first thirty days.
Part of me thinks it can be contagious under the right circumstances and part of me thinks not. As a precautionary measure I don't keep my tooth brushes near the others, all our dishes (even if hand washed) go through the dishwasher as do all our tooth brushes (they go through once a week)and I don't let anybody eat/drink after me. These are a few of the steps I have taken to prevent the spread of this DD to family/friends. The tooth brushes going through the dishwasher I have always done though, especially during cold/flu season. I have also read that we should not donate blood, so somebody out there thinks it may be contagious. Hopefully some day we will have the answers to all our questions.
I don't think it's generally contagious...when I date at some point I tell the person about my CFS and say that noone I've dated has told me they got it from me...hey, that way at least you're honest and out in the open about it...
I think the only thing contagious about it are the bad lifestyle and nutritional habits which lead to the malnourishment of the body. Then the weakened state of the body is apt to succumb to CFS if it encounters a particularly bad infection, trauma, cancer, etc.
a) making blood is an energy-intensive activity that requires a lot of specific nutrients from our already challenged and deficit-ridden bodies.
b) many of us already have a low volume of circulating blood compared to 'normals', so taking out more is likely to make us feel sicker.
It has nothing to do with being 'contagious'. I have shared water bottles, cups, food, and even (rarely) toothbrushes with my spouse for years (not to mention swapping saliva fairly regularly) and he is healthy as a horse. The bigger risk in sharing is that I will become exhausted fighting any germs he brings home, not that he will catch anything from me.
That said, if I had untreated thrush or other bacterial/parasitic overgrowths because of my malfunctioning immune system, he could conceivably acquire those from me. Chances are his healthier system would dispose of them with a minimum of fuss, though, as he eats healthy and exercises and gets good sleep most of the time.
I am in the camp of genetic susceptibility, then trigger, that is some stressor on body.
But, I do question the outbreaks.
But there may be an explanation. Some say Gulf War Syndrome is CFS.
So, could it be, that a particularly hard virus comes through. People get it, they get better, except those who have the genetic susceptibility. So, because of the increase number of people who have CFS, then it is an outbreak, but the virus, unknown or commonly known, was the trigger. So the CFS is not contagious, but the virus that triggered in the weak is.
And, Gulf War Syndrome is thought to be caused by a toxin. Could it be that the toxin is strong, and many exposed, but only those with genetic susceptibility are the ones that get sick.
And I think one of the outbreaks in Europe was associated with the polio virus. Could be the same, a polio like virus came through village, which was a trigger for those whose autonomic systems are weak.
I am expecting my first grandchild any day now. I want nothing more than to hold her in my arms and smother her with kisses but I fear that I have a virus, and my grandchild may have a genetic suseptibility. Some tell me not to be overly concerned-- just enjoy the baby. To me, that would be selfish. I wish I had some hard facts.