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I have had CFS for 6 years and my wife just developed it too

bctjr1993

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Hi everyone,

This feels surreal to type. And I have actually been in denial for a while. But I can no longer deny that my wife now also has CFS. Her illness mirrors mine to a T. We have seen every doc in every specialty, virtually all the tests come back normal, as they did for me. We share so many little specific symptoms. It’s obvious to me that we are suffering from the same disease.

She has to have gotten it from me, right? Sure there’s always the chance it’s a random freak accident, like when I got it. But I’m not that dense. Of all the people I personally know in real life I have never heard of one of them besides me ever getting it. Now within a year of my wife marrying me she gets it and I’m supposed to think it’s coincidence that the one person who lives with me and who I share the most physical contact with just happenEd to get it too? No. I gave this to her.

You may wonder if it’s something about the place we’re living. But no, because we were living halfway across the country when I developed CFS. The fact that I didn’t develop CFS in the current place we live leads me to believe that’s not the issue. Plus, we’ve had the place checked for mold.

So accepting the premise that she got this from her contact with me, what does that say about the nature of our illness? Has anyone else on this forum with CFS ever had a partner also develop it? Does this mean we should share some pathogen now that we should be able to find in common through testing? This has to mean something about what we have and the best way to go about treatment. I just don’t know what.

I just refuse to believe this was all by chance. No way odds that long would end up fucking our lives up.
 
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My mum had it when I was a child, she seems fairly well recovered, I have lived with her for the past 6 years, 5 years ago my problems started and recently diagnosed. It's interesting, I had a number of microbiome tests done through ubiome and uploaded them to a site run by a guy with Chronic Fatigue, one of the factors (he records symptoms with each microbiome assay) is whether you share an environment with someone with cfs. It makes sense that the microbiome "may" be causal, at least partly. I don't know how many people cohabitate with cfs patients and what the long term outcomes are, it may be a coincidence, but it's very interesting
 
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She has to have gotten it from me, right? Sure there’s always the chance it’s a random freak accident, like when I got it. But I’m not that dense. Of all the people I personally know in real life I have never heard of one of them besides me ever getting it. Now within a year of my wife marrying me she gets it and I’m supposed to think it’s coincidence that the one person who lives with me and who I share the most physical contact with just happenEd to get it too? No. I gave this to her.
I've been married for twenty years and my wife has had extensive physical contact with me. She has never exhibited a single characteristic of this illness, nor have my children.

If this illness were contagious, the whole world would be on lockdown. :D
 
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My partner is suffering mild symptoms but its long haul from Covid-19, which caused lingering issues in them and helped take my condition from moderate to severe. So it was contagious but it's not exactly an unknown contagion and it went from the non-CFS patient to the CFS one so went the wrong direction!

ME/CFS patients do have a problem in their blood and shouldn't give blood but it doesn't appear to normally be contagious, maybe it suggests an environmental trigger in this case.
 

CCC

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I am so sorry this has happened to you both. I does sound like your wife caught it off you. @Hip got his off a virus, which infected others as well. So it's not impossible.

If you could find a good integrative doctor, it does give you some basis for strongly arguing the case for an infection and more through testing of you both. One of the diagnoses for my son led to the whole house being tested and treated (mainly to prevent reinfecting him). So it can happen.

Not sure I should hold out a hope of an environmental cause, but have you looked at what she changed after moving in with you - diet, kitchen utensils, even toothpaste brands? I've seen all of these make family members quite sick.
 

Learner1

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@bctjr1993 Very sorry to hear your news.

If there's a bright spot, the fact that this seems "contagious" leads to the conclusion that it might be treatable.

Many patients have had a lot of normal tests, until they get to a doctor who is bright enough to be able to order tests that show all kinds of abnormalities.

Two areas that you might want to look into in doing some detective work to figuring out what caused the contagiousness of your illness:

1) Toxicity - as you are likely sharing the same household, eating much of the same food, does your house have an environmental factor, like a carpet or furniture that's off-gassing some chemical or do the walls of your house hide a mold problem behind one of them or are the pipes hiding something or is there lead paint? Is the food that you're eating contaminated with some sort of pesticide coming from a source? A company called Great Plains has both mycotoxin and chemical toxin tests that could figure this out.

2) Do you both have some sort of chronic infection, like Epstein Barr, HHV6, or other herpes family virus, enterovirus, Cocksackie virus, chlamydia pneumoniae or mycoplasma pneumonie, or??? Or has she gotten Lyme somehow? Given what we've all been learning about COVID testing, we've learned about the differences in PCR testing and antibody testing. If you've only been tested for antibodies, you might also test PCR. And you'd want yo check immune function to see how your bodies are dealing with infections. Many of us develop immunodeficiencies.

If not these, there are other explanations. The fact that both of you are I'll means there's something going on that needs to be found. I encourage you to be persistent in finding it, to the point of seeing other doctors until you find the root cause...

Best wishes...
 

Hip

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So accepting the premise that she got this from her contact with me, what does that say about the nature of our illness?
The viruses which are linked to ME/CFS are quite common in the general population. For example, 90% of adults have previously caught Epstein-Barr virus, and about 55% of adults have previously caught at least one of the six coxsackie B viruses.

So if these viruses triggered ME/CFS in every person who caught them, then ME/CFS would be very prevalent. But in fact ME/CFS is only found in 0.2% of the population, ie, 1 in 500 people. So that tells you that most people will catch these viruses without the infection triggering ME/CFS.


However, these viruses may trigger other diseases. For example, EBV is strongly linked to multiple sclerosis, and EBV is known to cause cancers like nasopharyngeal carcinoma.

Likewise, coxsackievirus B is linked to type 1 diabetes, sudden heart attacks, chronic myocarditis, and others.

You may like to read the large wave of ill health that my coxsackievirus B4 triggered as it spread to friends and family. My CVB4 virus triggered four heart attacks, killing one person, as well as myocarditis, anxiety disorders, depression, ruptured bowels, and others. See this post.
 

jstefl

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It certainly would be great if someone could figure this out. I have been ill for very close to 30 years and my wife is fine. My father and his brother both had severe ME/CFS and both had their lives shortened by it. Whatever is causing this illness must be complex, I believe that we would have found the cause if it were something simple such as environmental issues. People all over the world in all sorts of climates have this illness. I suspect that there will be a genetic component of some sort that allows this illness to happen, but there must be other parts to it.

I used to think of myself as being healthy until I wasn't, but looking back at my life before the ME/CFS started, I had some problems that most people didn't. I now believe that there was some weakness or illness that allowed the ME/CFS to start. Could be environmental, genetic, existing virus, or something else.

I am fortunate to have recovered some of my life back. I was fortunate that Valcyte worked for me, and I found a number of supplements that each gave me a small boost. Every day I come to this site hoping to find and answer, but at least I now feel that I can wait for a discovery that I am hoping is right around the corner.
 

geraldt52

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My wife and I both have CFS, and, by what I am certain is a coincidence, she also developed symptoms about 6 years after me. I have been sick now 36 years. Our daughter, growing up in the same house, eating the same things, etc., is long an adult now, and has never shown any symptoms. So, with n=1, it would seem our experience argues against both environmental and genetic "causation".

My wife and I share many symptoms, but also each have some of our own unique symptoms, which argues for each person being affected by the same, or similar, cause in a different way. I have always believed that cause is a virus, and I suspect that any number of viruses may cause CFS...ie: it isn't a reaction to a specific virus, but a specific reaction to any number of possible viruses. The only sense in which I believe my wife "caught" CFS from me is that she may have caught a virus from me, which led to CFS. The phenomenon of "long haul Covid" reinforces what I have always believed...that a severe viral infection can cause some neurological or immune damage from which a person may not recover. Not every Covid19 case is severe, and not everyone with Covid19 becomes a long-hauler.

The curse that you and your wife share is obvious, but the blessing is that you can understand and help each other in a way that would otherwise be unlikely...
 

Blue Jay

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My husband doesn't have ME. My younger son was diagnosed with it before I was. He seems to have more fibro symptoms than I do, my ME symptoms are more severe. My mother was diagnosed with what was then called fibrositis. I think, in my family's case, there's a genetic link.
 

Wishful

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I just refuse to believe this was all by chance. No way odds that long would end up fucking our lives up.
Read some books on statistics and how humans generally misunderstand them. Yes, it seems like a long shot that you both developed ME, but long shots do happen, and the odds probably aren't as long as you believe, even if your triggers are unrelated. As for "We share so many little specific symptoms.", that too may be skewed human perceptions. You may be ignoring differences, and/or misperceiving the level of similarities because you've already decided that they're identical. Some of it could even be false memories, where you remember it the way it fits your belief, rather than how it actually was.

As several members have pointed out, if ME truly was contagious, there would be a lot more statistical data to back that up. If it's not transferred by blood transfusions, it's hard to see how it could be contagious. I suppose a microbiome factor could make another ME victim share one or more additional symptoms, but I expect that the predisposition to ME has to be there already, if not the disease itself.

I didn't socialize much even before I figured out that socializing caused PEM, but I did meet a librarian who, when I described my PEM, said "I get that too.", and so I explained that her mysterious illness was probably ME. So, meeting that fellow ME victim was probably a long shot too.

If you still have trouble believing that it could just be random chance, roll a bunch of dice for a few hours, and see how often 'long shots' turn up. ;)
 

bctjr1993

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No. We were long distance and right when she moved to live with me she started having symptoms. Again, the place we live together is not the place where I developed my CFS. The chances are way higher that she got it from me then they are that this is just an unbelievable miracle of random chance
 

bctjr1993

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My wife and I both have CFS, and, by what I am certain is a coincidence, she also developed symptoms about 6 years after me. I have been sick now 36 years. Our daughter, growing up in the same house, eating the same things, etc., is long an adult now, and has never shown any symptoms. So, with n=1, it would seem our experience argues against both environmental and genetic "causation".

My wife and I share many symptoms, but also each have some of our own unique symptoms, which argues for each person being affected by the same, or similar, cause in a different way. I have always believed that cause is a virus, and I suspect that any number of viruses may cause CFS...ie: it isn't a reaction to a specific virus, but a specific reaction to any number of possible viruses. The only sense in which I believe my wife "caught" CFS from me is that she may have caught a virus from me, which led to CFS. The phenomenon of "long haul Covid" reinforces what I have always believed...that a severe viral infection can cause some neurological or immune damage from which a person may not recover. Not every Covid19 case is severe, and not everyone with Covid19 becomes a long-hauler.

The curse that you and your wife share is obvious, but the blessing is that you can understand and help each other in a way that would otherwise be unlikely...
I believe that some pathogen was somehow spread sexually.
 
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I'm really sorry to hear this. It must be tough, especially since it sounds like you have recently moved in together?

I echo the others in saying that it seems like a terrible coincidence that you have both become ill. I think I recall Ron Davis mentioning in one presentation or other that he thought the majority of people (something like 3/4 IIRC) could be susceptible to ME/CFS given the right circumstances (e.g. a really bad virus at the wrong time). It seems possible to me that she could have caught any virus from anywhere and happened to be susceptible to ME.

That being said, it sounds like if you did have a disease believed to be transmitted sexually, that would be something you could be tested and treated for, right?
 

bctjr1993

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I'm really sorry to hear this. It must be tough, especially since it sounds like you have recently moved in together?

I echo the others in saying that it seems like a terrible coincidence that you have both become ill. I think I recall Ron Davis mentioning in one presentation or other that he thought the majority of people (something like 3/4 IIRC) could be susceptible to ME/CFS given the right circumstances (e.g. a really bad virus at the wrong time). It seems possible to me that she could have caught any virus from anywhere and happened to be susceptible to ME.

That being said, it sounds like if you did have a disease believed to be transmitted sexually, that would be something you could be tested and treated for, right?
No, I believe it is something that won’t show up in tests. Something we don’t yet fully understand
 

Abrin

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The chances are way higher that she got it from me then they are that this is just an unbelievable miracle of random chance
I grew up in a household with a father who had ME/CFS and so did my brother.

We were both raised on the same food and in the same environment and spent decades in close proximity to my father yet only I went on to develop ME/CFS symptoms as I got older. My brother who is now in his late 40s to this day is not only still incredibly healthy but he also still continues to interact with our father on a regular basis while I have no real interaction with our father at all.

If your theory is correct then that would make it an unbelievable miracle of random chance that my brother never came down with ME/CFS.