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

bctjr1993

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@Abrin No it wouldn’t. My theory is that it was spread through sexual contact. Also that CFS is heterogeneous. I believe that the type I have has been spread through repeated exchange of bodily fluids via sexual contact. Maybe the amount of pathogen has been building up in her as we have more of these exchanges over time until it reached a point it started causing symptoms. What you have, from context clues, seems to be something in your family genetics.
 

Abrin

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What you have, from context clues, seems to be something in your family genetics.
Oh, sorry about that. Brain fog. I didn't realize that you meant you thought it was spread through sexual contact.

I suppose nothing is improvable but wouldn't that mean we'd already be seeing a previous pattern of a lot of people who contracted ME/CFS from their partners?
 

Hip

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Yes, Dr. Montoya tested me for those
Unfortunately Montoya's lab at Stanford did not use the right tests for coxsackievirus B. Montoya used a Coxsackie test which was not sensitive enough to detect the chronic Coxsackie infections often found in ME/CFS.

So you could have an active Coxsackie B infection, but not know about it.

Dr Chia found it is only the antibody tests that use the neutralization method which are sensitive enough. Such neutralization tests are offered by ARUP Lab in Utah (but no other lab in the US has coxsackievirus B neutralization tests, to my knowledge).
 

lenora

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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.
Hi......I'm corresponding with a very young man from Greece who began to date a woman. As it turned out, she also wasn't well and he figured that she has the exact same illness ME, as he does. So it does turn up in the general population as well.

I've had it for approx. 35 years + and my husband and two daughters, show no signs of it....nor do any of my 4 grandchildren. I'm very thankful b/c that concerned me for a long time. I was also the oldest in a very large family and I'm the only one who ever developed the symptoms of ME.

Your wife must have gone through some stress if you recently moved hafway across the country. Perhaps she also developed a virus of some sort then. Don't feel guilt about being the donor of this illness. I hope she isn't horribly affected for long. Wishing both of you well....Yours, Lenora.
 

Wishful

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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.
I believe that geraldt52's version is more likely: that you and your wife had similar predisposition to triggering ME from the same trigger. Some viruses (or other microbes) are probably more likely to trigger ME than others, and there may be ME subsets that are more sensitive to one type or another. Thus I think it's more likely that your wife caught the same trigger for ME from you or your belongings than that she caught ME from you. I still think there's a reasonably large probability that she triggered on something else, and it's a reasonable coincidence that you also happened to have ME.

and right when she moved to live with me she started having symptoms.
Moving involves stresses, changes in diet, etc, that can probably bias the predisposition to triggering ME. Thus the fact that she developed it right after moving in with you is probably not an unreasonable coincidence. Maybe if she'd moved to some dense urban environment with lots of exposure to new microbes, she'd have triggered even without being near you or any other PWME.

I don't recall any of the discussion about ME epidemics suggesting that ME itself was infectious; it was that the trigger was infectious and particularly good at triggering ME.
 

gbells

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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? 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.
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.
I'm sorry to hear about your wife and your illness. What do we know about illness triggers for ME?
  • Most people develop ME after a viral infection.
  • Most ME patients test positive for epstein barr virus infection and HHV6 is very common.
  • Epstein barr virus takes months to fully recover from.
My theory is that mononucleosis and other chronic viruses raises blood nagalase which suppresses GcMAF antibody creation and creates a vulnerable window where if you get another chronic ME virus (ie. HHV6) they synergize to start the ME illness by increasing infectivity. These viruses are spread through body fluids so that includes sex, kissing etc. The only way a spouse could prevent being infected eventually would be to be celibate from the partner until the EBV had fully recovered.

Can you recall your wife coming down with a virus that preceeded her ME?
 

bctjr1993

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I'm sorry to hear about your wife and your illness. What do we know about illness triggers for ME?
  • Most people develop ME after a viral infection.
  • Most ME patients test positive for epstein barr virus infection and HHV6 is very common.
  • Epstein barr virus takes months to fully recover from.
My theory is that mononucleosis and other chronic viruses raises blood nagalase which suppresses GcMAF antibody creation and creates a vulnerable window where if you get another chronic ME virus (ie. HHV6) they synergize to start the ME illness by increasing infectivity. These viruses are spread through body fluids so that includes sex, kissing etc. The only way a spouse could prevent being infected eventually would be to be celibate from the partner until the EBV had fully recovered.

Can you recall your wife coming down with a virus that preceeded her ME?
No, I can’t recall that. Hers started gradually. I remember she used to workout all the time and the intensity of the workouts she could do over time gradually started getting lower and lower, a gradual worsening of exercise intolerance. She used to lift weights for hours a day, now on a good day she has a short walk in her.
My illness was sudden onset, I remember the exact date that I got CFS. But I was feeling the healthiest and most energetic I’ve ever felt in my life before that. I went to sleep feeling amazing and woke up the next day with CFS
 

Judee

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I do think there are many triggers but somehow the genetic disposition to getting it somehow is present in all patients who end up with it. If a person's trigger is an infection (bacterial or viral) then I think it would be possible for others around us to contract it as in Hips examples.

@bctjr1993, Dr Garth Nicholson has found this in a lot of patients with ME/CFS who have mycoplasm infections. He talks about a prison town in Texas where the infection started at the prison and then spread to the guards who ended up spreading it to their family members.

I also think it has to do with how the infection is spread on whether family members come down with it. Lyme disease for instance doesn't seem to spread from person to person within a family.
 
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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.
What are your symptoms? My entire family and most of my friends have what I have. It is a specific subgroup of CFS, which has its own symptoms.
 

bctjr1993

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What are your symptoms? My entire family and most of my friends have what I have. It is a specific subgroup of CFS, which has its own symptoms.
Burning muscles on exertion. Both of our shoulders burn while we brush our teeth and we have to do it in ahort intervals. Shortness of breath and dizziness on any exertion that raises heart rate. Brain fog. Insomnia. We get wired at night which keeps us awake.
 

gbells

Improved ME from 2 to 5
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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? 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.
We're looking at a multiple chronic virus infection etiology so yes it is transmissible. It usually gets going post epstein barr virus which has a long convalescence period of several months before sufficient antibodies are generated. If you pick up another virus (HHV6, CMV, non-cytolytic coxsackievirus) then it usually starts the ME due to high nagalase.
 

Hip

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It usually gets going post epstein barr virus
Where did you read ME/CFS usually starts after EBV?

EBV is usually caught in the teens or early twenties, and after that period, 90% of adults will have already acquired this virus (its seroprevalence in the adult population is 90%). Thus further acute infections with EBV are not possible in these 90% of adults who already have EBV.

So we could speculate that perhaps EBV is a more common cause of ME/CFS in the teens or early twenties, but for adults, my guess is that coxsackievirus B, echovirus or cytomegalovirus will be the more common causes, as these are viruses which can be acquired later in life.

HHV-6 is usually picked up in the first few years of life while still a baby or infant, and the HHV-6 seroprevalence in adults is almost 100%. So I am not sure if it is even possible to get an acute HHV-6 infection later in life which might trigger ME/CFS.
 
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gbells

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Where did you read ME/CFS usually starts after EBV?
I'm basing it on the fact that EBV has the longest convalescence period but yes other viruses can predispose. I think the ultimate deciding factor is the total number of virally infected cells which is shown by the nagalase level. An active viral infection suppresses immunity and allows other viruses to penetrate deeper.
 
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Hip

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other viruses can predispose.
Why do you say viruses other than EBV can predispose, by which I assume you are saying they cannot trigger or maintain ME/CFS?

We simply do not have the evidence to determine which viruses can or cannot trigger or maintain ME/CFS.

We know that ME/CFS can appear after mononucleosis, which is usually caused by EBV. So this is the only virus we know for sure can trigger ME/CFS.

We also know that many ME/CFS patients have enterovirus infections in their muscle tissues, as determined by PCR testing on muscle tissue biopsies. So this is the only virus which has been proven to to be present in ME/CFS patient muscles.

And we know that ME/CFS often appears after an acute gastrointestinal upset, and this is an acute symptom which enterovirus can cause, but EBV cannot (except in rare cases).



I think the ultimate decising factor is the total number of virally infected cells which is shown by the nagalase level.
I don't think all viruses make nagalase, just some viruses. I have not found a reliable source which details which viruses make it, and which do not.
 
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gbells

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Why do you say viruses other than EBV can predispose, by which I assume you are saying they cannot trigger or maintain ME/CFS?

We simply do not have the evidence to determine which viruses can or cannot trigger or maintain ME/CFS.
Ok, let's research it here and see what the data says.
 

lenora

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What are your symptoms? My entire family and most of my friends have what I have. It is a specific subgroup of CFS, which has its own symptoms.
Hi......I'm corresponding with a very young man from Greece who began to date a woman. As it turned out, she also wasn't well and he figured that she has the exact same illness ME, as he does. So it does turn up in the general population as well.

I've had it for approx. 35 years + and my husband and two daughters, show no signs of it....nor do any of my 4 grandchildren. I'm very thankful b/c that concerned me for a long time. I was also the oldest in a very large family and I'm the only one who ever developed the symptoms of ME.

Your wife must have gone through some stress if you recently moved hafway across the country. Perhaps she also developed a virus of some sort then. Don't feel guilt about being the donor of this illness. I hope she isn't horribly affected for long. Wishing both of you well....Yours, Lenora.
lint7....Hello. I just wanted to mention that the young man in Greece was on his first date with this woman, and he figured with listening to her complaints that they had the same thing. He's quite bright, so I'm sure he knows what he's talking about.

Pretty strange that so many of your friends would have the same thing. There are all sorts of viruses out there, I believe I had this for a no. of years before I tore the nerves down my l. side with a sneeze and then later had a difficult surgery. Bear in mind that this all took place at least 40+ years ago. Yours, Lenora.