Fear of Transmitting ME/CFS to Partner, A Life Long Decision

[md55]

Hi everyone,

I am not sure if it would be appropriate for this topic to be in this section of the board, but I am in need of some advice for a life long decision. I apologize for the long post but I feel it's required to give some context to my situation.

To make a long story short, I first got ME/CFS symptoms in my mid 20s (full story here http://forums.phoenixrising.me/index.php?threads/can-overtraining-syndrome-cause-me-cfs.9075/). Since then, I have been given a "possible mild ME/CFS diagnosis" because not all the symptoms are there but the PEM is definitely present. Due to ME/CFS symptoms, I avoided getting into relationships because of the fear of being a burden to potential partners and not being able to give them the attention and effort that a healthy relationship deserves. Now in my 30s, I've started to come to accept my limitations and decided to put myself out there to see if I can find someone that would accept me despite my shortcomings. Fortunately I did and things have been going great for the past 6 months. However, with dating comes the question of intimacy. I started looking into detail whether ME/CFS is contagious and fortunately (or unfortunately), there is no concrete answer to this question. As some of you might've noticed, there is a separate thread I made with regards to ME/CFS transmission.

Here is where I ask of everyone's advice. Although statistics show that the majority of non-gentic family members remain healthy, there are still studies that show a small percentage of spouses/partners becoming ill with either ME/CFS or similar symptoms. I am going through the dilemma of WHAT IF (despite the small odds) she gets sick from me? The selfish side of me says to have a talk with her and if she's ok with it, we continue on. The logical side of me says to make the decision for the both of us and walk away from this because I would never be able to forgive myself if she did get sick. If I walk away from her, I am pretty much making the decision to remain single for the rest of my life. I then ask myself the question if it's worth throwing everything away for a "WHAT IF".

I personally think this is a very hard decision and therefore any feedback from everyone would be much appreciated. Thank you again and I look forward to your responses.

 

[Sean]

It is a tough one. Certain early on that possibility was a factor in keeping me out of the mating game. The thought of giving it to somebody I cared about was too awful to contemplate.

But as far as I know there is still no good evidence of it being primarily infectious or otherwise directly transmissible (maybe apart from a modest genetic predisposition, which would only potentially affect any children you have, not your partner), and plenty of patients have long term partners who are healthy.

All I can suggest is to be completely upfront about your situation with your friend, and maybe discuss the safe sex thing.

Hope it works out for you.

 

[sorin]

I would say that protected sex is mandatory. However, if CFS is transmissible through saliva then just a kiss can be enough to transmit this disease.

 

[daisybell]

Be completely honest and discuss it fully.... It's her decision to make just as much as yours!

 

[xrayspex]

If I wanted to get involved with someone and vice versa I would just explain the situation to them and if they want to take the chance go for it
It seems really possible that many more things could have an infectious component to them than what we like to admit.....but also a genetic component...so if someone has genetic predisposition to be susceptible to certain infectious diseases then it could just be a matter of time with them one way or another they could likely get exposed...whether its a partner, someone at work with flu or a friend who shares a drinking cup.........
Life is inherently risky.....maybe better to just get in the dance when you can as it goes by fast

 

[md55]

It is a tough one. Certain early on that possibility was a factor in keeping me out of the mating game. The thought of giving it to somebody I cared about was too awful to contemplate.

But as far as I know there is still no good evidence of it being primarily infectious or otherwise directly transmissible (maybe apart from a modest genetic predisposition, which would only potentially affect any children you have, not your partner), and plenty of patients have long term partners who are healthy.

All I can suggest is to be completely upfront about your situation with your friend, and maybe discuss the safe sex thing.

Hope it works out for you.

@Sean thank you for your input. You mentioned that this was a factor in keeping you out of the mating game early on. Did you end up putting yourself out there and if you did how did things turn out?

Be completely honest and discuss it fully.... It's her decision to make just as much as yours!

@daisybell Yes I fully agree that I have to be upfront with her. I just wish I looked into this in more detail earlier on. Now feelings are attached and I personally think it's unfair for her to make this decision now. If it was earlier on, both of us would've been able to make a more rational decision.

If I wanted to get involved with someone and vice versa I would just explain the situation to them and if they want to take the chance go for it
It seems really possible that many more things could have an infectious component to them than what we like to admit.....but also a genetic component...so if someone has genetic predisposition to be susceptible to certain infectious diseases then it could just be a matter of time with them one way or another they could likely get exposed...whether its a partner, someone at work with flu or a friend who shares a drinking cup.........
Life is inherently risky.....maybe better to just get in the dance when you can as it goes by fast

@xrayspex I understand that genetics probably does play a role in this and that even IF she caught something from me that it would not lead to anything. But again, it's that WHAT IF right? And yes life is risky and that's something I'll have to think about. Thank you for your input.

 

[SOC]

I think it's all about perspective. There is always the chance we will transmit an infection to those we love through a number of paths -- sex, kissing, sharing eating utensils, even touching the same surfaces. We live with that risk because that's life. We spread EBV, CMV, and HHV6 like mad through the population every minute of every day, mostly within family groups.

The evidence that ME/CFS is sexually transmissible is non-existent. The demographics do not support the idea that ME/CFS itself is sexually transmissible. We would have many more sexual partner pairs than we do if it were. That does not mean that ME/CFS is, for a certainty, not sexually transmissible or that some infection related to (but not the cause of) ME/CFS is not sexually transmissible. The point is that you don't need to worry more about transmitting ME/CFS than you do about any of a number of other diseases. For example, unless you're a virgin, you're more likely to infect your partner with HPV, which is known to be sexually transmissible, than you are to give her ME/CFS. Yet very few men give any thought to whether they are passing on HPV and even fewer test themselves to see if they are infected with HPV. It's just considered one of life's risks.

Safe sex is always a good idea, and more so if you are ill. The risk of transmitting ME/CFS sexually is not a concern to ME/CFS specialists and doesn't need to be for you. That doesn't mean you shouldn't practice safe sex on the small chance you have some kind of sexually transmissible disease either one of you is unaware of. Of course you should discuss any concerns you have with a potential sexual partner, but at the same time, you don't need to present the risk as any greater than it is. It's probably more important to discuss whether you are transmitting HPV between you than ME/CFS. Cervical, vaginal, penile, and anal cancers are serious bitches.

 

[shannah]

A dilemma indeed and unfortunately, one there is no easy answer to yet. You are obviously a very thoughtful and caring person.

You might be interested in a short video clip released yesterday by Dr. Lucinda Bateman. I'm not sure if you're aware but Dr. Bateman had a sister who had ME and died a number of years ago.

In this clip from a webinar Dr. Lucinda Bateman answered some questions.

0:24: Can I be cured of this illness ME/CFS?
1:39: Are there treatments for ME/CFS?
2:54: Is ME/CFS progressive? Can this be fatal?
4:38: Is ME/CFS contagious?

In regards to the last question, Dr. Bateman says,

" So far, there have been really no studies or, I don't think there's any evidence to suggest this illness is contagious per se. We often see it occurring sometimes in familial settings and there may be an infectious agent at some stage in this illness that could make someone sick but in a simpler form. But right now, it doesn't appear to be contagious, at least not in the way we think of contagious."

Have you read the hypothesis by Underhill recently published. A thread and link to her paper can be found here.

http://forums.phoenixrising.me/inde...tious-disease-by-dr-rosemary-underhill.41116/

If you look at the Lyme Disease forums on line, there are numbers who are ill within families. Of course, it could be that all family members were bitten by ticks. But there seems to be those in the medical field that are speculating that perhaps 'Chronic'/'Post Treatment Lyme' and ME/CFS are the same illness and if this is so why have whole families come down with it.

??????? Simply not enough is known at this point.

Myself, I have been ill long term and have two ill children, one with severe ME, the other on the autism spectrum. As you can imagine, it has been rough.

Best wishes and wisdom with your decision.

 

[jess100]

I'm going to weigh in on this-forgive me if I don't know as much as so many people do here. I'm on this forum bc of a few years of chronic fatigue. Do I actually have CFS/ME? I don't know. But it seems from several blood tests that I have tick borne illnesses (Anaplasmosis and Babesia -but no Lyme) and a few viruses (EBV, CMV, Parvo and maybe others) There are some other issues with NK cells as well.
I'm saying all this bc my SO did become sick with one or more of these. He had (and still has) the exact symptoms. I asked Dr. Kaufman if it's possible he got the EBV from me since it's a reactivation, and he said, "The literature does not support that, but I think it's possible."
So it probably depends on what is causing your sickness-and whether that is known or not (sorry I did not read what's in the links) As @SOC said we are transmitting things all the time.
It is a tough decision. As others have suggested maybe a good long open talk and some research together would be the best way to manage the dilemma. And as others have said, you're very considerate and thoughtful to consider all of these things.

Please keep us posted on how it goes for you

 

[Hip]

I first got ME/CFS symptoms in my mid 20s (full story here http://forums.phoenixrising.me/index.php?threads/can-overtraining-syndrome-cause-me-cfs.9075/). Since then, I have been given a "possible mild ME/CFS diagnosis" because not all the symptoms are there but the PEM is definitely present.

Two viruses strongly linked to triggering ME/CFS are enterovirus and Epstein-Barr virus.

If your ME/CFS was triggered by EBV, then note that 95% of the adult population already have this virus in their body, and if you girlfriend already has EBV, I don't think you would be able to pass your virus on to her, since she will already have EBV antibodies.

 

[SickOfSickness]

This will probably add to your dilemma, but I also have these concerns:

From my experience, boyfriends or potential boyfriends will shrug and think it's so unlikely to be infected, since they are currently healthy. People don't assess risk well. People don't want to believe something could strike them down suddenly.

Secondly, they usually don't understand how bad the illness is. I feel like they're thinking, worst case, they get sick and maybe now they only have half as much energy. They are still imagining having a good life.

If she got sick...

I think both partners being sick is pretty bad, unless each of them can manage to take care of themselves basically all the time. Because your partner could be ill on the day you're worst.

Even if you can take care of yourself all the time, she maybe could not.

Even if you both could, what if you get worse, or she does?

 

[Sean]

@Sean thank you for your input. You mentioned that this was a factor in keeping you out of the mating game early on. Did you end up putting yourself out there and if you did how did things turn out?

No, sort of tried for a while, but eventually reality won. Bit hard to get anything going when you feel like shit all day every day, are flat out keeping yourself fed and washed, and have no money. So, now in my early 50s and still single, probably remain so the way things are going.

 

[SOC]

No, sort of tried for a while, but eventually reality won. Bit hard to get anything going when you feel like shit all day every day, are flat out keeping yourself fed and washed, and have no money. So, now in my early 50s and still single, probably remain so the way things are going.

Ah, I wouldn't give up too soon. You're approaching that age when women are more interested in a decent man who can be a good companion than in a man with high earning power and physical strength. By the time women reach our age and are still single (or newly single), they've learned to fend for themselves financially and physically and/or have learned to live without the big house and associated accoutrements. We don't have to worry about how we're going to manage raising kids, so the strong, financially well-endowed thing becomes less important than finding a good friend with whom to share life, whatever that life may be. It might be time to start looking around again. The priorities are different now.

OTOH, if you're looking for a 22yo gold-digging bimbo, you're probably out of luck.

 

[Sean]

Thank you, SOC.

I shall keep my eyes open. After my afternoon nap.

 

[md55]

Thank you all for your responses. Your support means a lot to me.

I think it's all about perspective. There is always the chance we will transmit an infection to those we love through a number of paths -- sex, kissing, sharing eating utensils, even touching the same surfaces. We live with that risk because that's life. We spread EBV, CMV, and HHV6 like mad through the population every minute of every day, mostly within family groups.

The evidence that ME/CFS is sexually transmissible is non-existent. The demographics do not support the idea that ME/CFS itself is sexually transmissible. We would have many more sexual partner pairs than we do if it were. That does not mean that ME/CFS is, for a certainty, not sexually transmissible or that some infection related to (but not the cause of) ME/CFS is not sexually transmissible. The point is that you don't need to worry more about transmitting ME/CFS than you do about any of a number of other diseases. For example, unless you're a virgin, you're more likely to infect your partner with HPV, which is known to be sexually transmissible, than you are to give her ME/CFS. Yet very few men give any thought to whether they are passing on HPV and even fewer test themselves to see if they are infected with HPV. It's just considered one of life's risks.

Safe sex is always a good idea, and more so if you are ill. The risk of transmitting ME/CFS sexually is not a concern to ME/CFS specialists and doesn't need to be for you. That doesn't mean you shouldn't practice safe sex on the small chance you have some kind of sexually transmissible disease either one of you is unaware of. Of course you should discuss any concerns you have with a potential sexual partner, but at the same time, you don't need to present the risk as any greater than it is. It's probably more important to discuss whether you are transmitting HPV between you than ME/CFS. Cervical, vaginal, penile, and anal cancers are serious bitches.

Two viruses strongly linked to triggering ME/CFS are enterovirus and Epstein-Barr virus.

If your ME/CFS was triggered by EBV, then note that 95% of the adult population already have this virus in their body, and if you girlfriend already has EBV, I don't think you would be able to pass your virus on to her, since she will already have EBV antibodies.

@SOC and @Hip, from what I can gather from your posts, ME/CFS ITSELF cannot be transferred. Rather it's the triggering factors (e.g. EBV, enteroviruses or other infections agents) that can be correct? Would it be safe to assume that even IF someone has EBV, enteroviruses or other infections agents, you would need the right conditions (e.g. "perfect storm") in order for the contagion to act as the trigger, and it's this "perfect storm" (e.g. genetics, environment, stress, etc.) that no one really knows what it comprises of at this moment? In other words, just because someone gets infected with a contagion (e.g. EBV, enterovirus or other infections agents), it doesn't mean they automatically get ME/CFS. Please correct me if I am wrong.

A dilemma indeed and unfortunately, one there is no easy answer to yet. You are obviously a very thoughtful and caring person.

You might be interested in a short video clip released yesterday by Dr. Lucinda Bateman. I'm not sure if you're aware but Dr. Bateman had a sister who had ME and died a number of years ago.

In this clip from a webinar Dr. Lucinda Bateman answered some questions.

0:24: Can I be cured of this illness ME/CFS?
1:39: Are there treatments for ME/CFS?
2:54: Is ME/CFS progressive? Can this be fatal?
4:38: Is ME/CFS contagious?

In regards to the last question, Dr. Bateman says,

" So far, there have been really no studies or, I don't think there's any evidence to suggest this illness is contagious per se. We often see it occurring sometimes in familial settings and there may be an infectious agent at some stage in this illness that could make someone sick but in a simpler form. But right now, it doesn't appear to be contagious, at least not in the way we think of contagious."

Have you read the hypothesis by Underhill recently published. A thread and link to her paper can be found here.

http://forums.phoenixrising.me/inde...tious-disease-by-dr-rosemary-underhill.41116/

If you look at the Lyme Disease forums on line, there are numbers who are ill within families. Of course, it could be that all family members were bitten by ticks. But there seems to be those in the medical field that are speculating that perhaps 'Chronic'/'Post Treatment Lyme' and ME/CFS are the same illness and if this is so why have whole families come down with it.

??????? Simply not enough is known at this point.

Myself, I have been ill long term and have two ill children, one with severe ME, the other on the autism spectrum. As you can imagine, it has been rough.

Best wishes and wisdom with your decision.

@shannah, thank you for the video. Yes, I have read the article, it's really what set off my concerns. I can only imagine how tough it is to take care of yourself and two children. Please don't mind me asking, but do you have a spouse that helps out and provide support?

No, sort of tried for a while, but eventually reality won. Bit hard to get anything going when you feel like shit all day every day, are flat out keeping yourself fed and washed, and have no money. So, now in my early 50s and still single, probably remain so the way things are going.

Ah, I wouldn't give up too soon. You're approaching that age when women are more interested in a decent man who can be a good companion than in a man with high earning power and physical strength. By the time women reach our age and are still single (or newly single), they've learned to fend for themselves financially and physically and/or have learned to live without the big house and associated accoutrements. We don't have to worry about how we're going to manage raising kids, so the strong, financially well-endowed thing becomes less important than finding a good friend with whom to share life, whatever that life may be. It might be time to start looking around again. The priorities are different now.

OTOH, if you're looking for a 22yo gold-digging bimbo, you're probably out of luck.

@Sean I agree with @SOC, you never know what's out there unless you try. Then again, if you're perfectly comfortable with yourself, then that's fine too. I was pretty much comfortable living a singles life until I started putting myself out there just to try things out for fun. I didn't think I would end up finding someone that would consider me at all. Now I am stuck in this dilema haha. @SOC, your point of view is something I never considered. Thank you for the enlightenment.

This will probably add to your dilemma, but I also have these concerns:

From my experience, boyfriends or potential boyfriends will shrug and think it's so unlikely to be infected, since they are currently healthy. People don't assess risk well. People don't want to believe something could strike them down suddenly.

Secondly, they usually don't understand how bad the illness is. I feel like they're thinking, worst case, they get sick and maybe now they only have half as much energy. They are still imagining having a good life.

If she got sick...

I think both partners being sick is pretty bad, unless each of them can manage to take care of themselves basically all the time. Because your partner could be ill on the day you're worst.

Even if you can take care of yourself all the time, she maybe could not.

Even if you both could, what if you get worse, or she does?

@SickOfSickness, this is definitely a concern of mine. Not to mention the guilt that would come with getting my partner ill and ruining their life and career.

 

[SOC]

@SOC and @Hip, from what I can gather from your posts, ME/CFS ITSELF cannot be transferred. Rather it's the triggering factors (e.g. EBV, enteroviruses or other infections agents) that can be correct? Would it be safe to assume that even IF someone has EBV, enteroviruses or other infections agents, you would need the right conditions (e.g. "perfect storm") in order for the contagion to act as the trigger, and it's this "perfect storm" that no one really knows what it comprises of at this moment? In other words, just because someone gets infected with a contagion (e.g. EBV, enterovirus or other infections agents), it doesn't mean they automatically get ME/CFS. Please correct me if I am wrong.

Nobody knows for certain what causes ME/CFS. The several ME/CFS specialists I've talked to have all said multiple factors are probably involved -- most likely an existing immune impairment (genetic or previous damage from infection or toxin) followed by a possibly common infection (EBV/CMV/HHV6, enteroviruses, Lyme, etc) or an as-yet unknown infection.

It is absolutely true that just because one gets infected with EBV (or others herpesviruses like CMV or HHV6 or VZV) or Lyme, or other known ME-associated infections, it doesn't mean one automatically get ME/CFS. The vast majority of the adult population has some combination of latent EBV, CMV, HHV6, VZV (chicken pox) and very, very few develop ME/CFS.

It's possible that some as-yet unknown pathogen is at the root of ME/CFS, but no one has found it yet. If it exists, it is not readily contagious or many more people would have ME/CFS and we'd see many more clusters. It's more likely that even if The ME Pathogen exists, there still needs to be some kind of multiple-hit situation if we're going to explain the demographics of the ME patient population.

 

[md55]

Nobody knows for certain what causes ME/CFS. The several ME/CFS specialists I've talked to have all said multiple factors are probably involved -- most likely an existing immune impairment (genetic or previous damage from infection or toxin) followed by a possibly common infection (EBV/CMV/HHV6, enteroviruses, Lyme, etc) or an as-yet unknown infection.

It is absolutely true that just because one gets infected with EBV (or others herpesviruses like CMV or HHV6 or VZV) or Lyme, or other known ME-associated infections, it doesn't mean one automatically get ME/CFS. The vast majority of the adult population has some combination of latent EBV, CMV, HHV6, VZV (chicken pox) and very, very few develop ME/CFS.

It's possible that some as-yet unknown pathogen is at the root of ME/CFS, but no one has found it yet. If it exists, it is not readily contagious or many more people would have ME/CFS and we'd see many more clusters. It's more likely that even if The ME Pathogen exists, there still needs to be some kind of multiple-hit situation if we're going to explain the demographics of the ME patient population.

@SOC Thanks for the prompt response. I was reading the following article by Dr. Underhill. In some ways, would you agree that referencing ME/CFS as an "infectious disease" is somewhat incorrect then? She goes into detail that there is potentially an infectious agent, which is what we've been discussing. But calling ME/CFS an "infectious disease" seems to conflict with our understanding of the illness. What's your opinion?

http://forums.phoenixrising.me/inde...tious-disease-by-dr-rosemary-underhill.41116/

 

[SOC]

@SickOfSickness, this is definitely a concern of mine. Not to mention the guilt that would come with getting my partner ill and ruining their life and career.

The odds are probably just as high that your partner will develop cancer or MS or some other serious disease completely independent of ME as that you will transmit ME to her. Then all the problems SickofSickness mentioned would still apply. Are you going to avoid having a relationship because she might develop cancer or MS or whatever and you two would have a difficult time managing two very serious illnesses? Or are you going to forge ahead since the odds are on your side and cope with the situation if your luck turns bad and she develops a serious illness too?

We don't need to make our lives worse than they are by imagining all the worse case scenarios and running out lives as if that is what is going to happen. Yes, there is no guarantee that your partner won't get ME any more than there's a guarantee she won't get some other disease. Life doesn't come with guarantees. You look at the odds and do the best you can.

While you're thinking about contagion.... Have you considered that if you have ME and the commonly-associated immune dysfunction, it is more likely that you will catch something from her that could be damaging to your condition? If she brings home a flu one day and you get it, you could have a major crash. If you haven't had EBV or HHV6 yet, you could catch it from her and your immune system could be unable to put it into latency causing your condition to seriously deteriorate. These are possibilities, not probabilities. Are you going to avoid a relationship with her because she might make you much sicker by exposing you to some infection you wouldn't encounter because you're not out in the world much? I'm guessing the answer is no.

It's all about maintaining perspective. Bad things can happen. What are the odds they will happen? You might kill her in a car or household accident. It's possible. You'd feel guilty if that happened. Are you going to cut off your relationship because that might happen? Again, I guess not. I suggest you don't create trouble where trouble does not exist. Life with ME is hard enough without making unnecessary problems for ourselves.

 

[SOC]

@SOC Thanks for the prompt response. I was reading the following article by Dr. Underhill. In some ways, would you agree that referencing ME/CFS as an "infectious disease" is somewhat incorrect then? She goes into detail that there is potentially an infectious agent, which is what we've been discussing. But calling ME/CFS an "infectious disease" seems to conflict with our understanding of the illness. What's your opinion?

http://forums.phoenixrising.me/inde...tious-disease-by-dr-rosemary-underhill.41116/

I think this statement from her hypothesis paper is significant here:

The chronic phase of ME/CFS does not appear to be particularly infective.

If I understand her, she's saying there may be an acute infection that triggers ME/CFS and is contagious in the first stages, probably a matter of days -- weeks at the most -- as with most infections. An important issue is whether that infection is simply a trigger and is no longer present, or whether it is causal and remains in PWME in a non-contagious form. She hypothesizes that the pathogen persists but is not particularly infective. Either way, it seems you don't need to worry about being contagious if you are in the chronic phase.

Note also that Dr Underhill is very clear that her thinking is strictly a hypothesis, that there is currently no evidence to support the hypothesis.

No known pathogen has been shown to cause ME/CFS. Confirmation of the hypothesis requires identification of a causal pathogen.

Let me be clear -- I am currently of the belief that continuing infectious agents play a large part in most (if not all) ME. I am not convinced, however, that those infectious agents are causal or that they pose a significant risk to the general population. I have seen multiple top ME/CFS specialists and I have asked every one if I should be concerned about transmitting ME/CFS to other people. Every single one has said very clearly that it is not something to be concerned about -- that there is no evidence we pose any infectious risk to the general population.

 

[Hip]

Would it be safe to assume that even IF someone has EBV, enteroviruses or other infections agents, you would need the right conditions (e.g. "perfect storm") in order for the contagion to act as the trigger, and it's this "perfect storm" (e.g. genetics, environment, stress, etc.) that no one really knows what it comprises of at this moment? In other words, just because someone gets infected with a contagion (e.g. EBV, enterovirus or other infections agents), it doesn't mean they automatically get ME/CFS. Please correct me if I am wrong.

I think this idea of a "perfect storm" of conditions may well explain why a virus triggers ME/CFS in a small percentage of people, but not in most people.

Dr Chia actually made a very interesting observation: that those who were inadvertently given immune suppressing corticosteroids during an acute enterovirus infection had a higher risk of developing ME/CFS from that infection.

So corticosteroids during an acute infection would appear to help create this "perfect storm" of conditions necessary for the virus to trigger ME/CFS.