Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

[gregf]

Besides the issues of being healthy enough to raise a child, and the risks of all the possibilities of infecting a child listed for HIV, there is one other important consideration : Is XMRV/MLV endogenous in humans ? It is endogenous in mice.

HIV is exogenous, that is it is coded into the DNA of some of the host cells but not germ line cells, eggs and sperm.

XMRV look like being endogenous, that is, it is infecting our germ line cells and will be passed on to the next generation.

That means, even if we take all the precautions listed for HIV, we still pass it on to our children, and their children.

I am not sure if this issue is settled, but given all the stories of ME running in families, there is sufficient evidence to suspect XMRV is endogenous in humans.

Now the study of Paul Cheney's patients suggests that XMRV+ people without ME are even higher risk for cancer and autoimmune disease than us. So even if our children do not get ME, they are at elevated risk of cancer.

So in the last few days, the situation has changed, and I now personally feel it is far too great a risk to impose on our children. What would I say to my teenager with ME and/or cancer who accuses, "you knew this was possible ?"

I hope (welcome if) someone can show I am wrong as time is running out for me. :sad:

 

[ukxmrv]

Congratulations Jemal and Mrs Jemal!

Wishing you every happiness and hope that the twins will not be too much of a handful.

Really happy to hear your good news.

 

[Jemal]

Thanks for the well wishes!

Gregf: there's so much we don't know at this moment. Things could be a lot worse/better then we think. I know my wife would still want to have children, even with my current symptoms and the risk that might be involved. The situation might be different if she was the one with CFS and not me. What gives me hope is the fact that after being together for almost 10 years, she has no symptoms at all. Also I am having relatively mild symptoms, I am not totally bedbound, like some patients.

Anyway, at the moment we just don't know if:

- a virus like XMRV is the cause of CFS (I am a believer)
- how XMRV spreads and how contagious it is (maybe the immune system takes cares of the virus in most people and we are just the unlucky - 70% of cats fight off the FelV retrovirus which has been compared to XMRV)
- how XMRV affects our bodies (it could take years before symptoms start to show up - HLTV-1 is the first retrovirus found in people and it causes problems in only a small percentage of the infected, that's one of the reasons why most people are not treated for it)

I know there's data suggesting that XMRV is spreading in families and we know CFS runs in some (many? we lack the data I think) families, but it doesn't seem to be all that obvious. If CFS was highly contagious and deadly we would have gotten a lot more attention.
Now, I am not saying that we are having a picnic here... I feel like a wreck a lot of days and I know I have only mild symptoms compared to most of you.

Also I have high hopes for the future as XMRV does offer a chance for treatment and maybe even a cure (in the very long run).

So yeah... we need to take our illness into consideration, but I am not sure if I would postpone having children because of it.

For me it's too late to take it into consideration anyway
(and many people with CFS already have children)

 

[CAcfs]

Just wanted to let everyone know I'm still here. Thanks for the replies.....when I feel a little more "up to it," I will come back and add more comments on how I'm feeling about the XMRV transmission issue, what can/should be done for prevention, etc.

From a "moral" standpoint, however.....I have been pondering the moral questions this issue has brought up, and I don't think there is a reason to NOT have children, based solely on "risk factors for cancer/autoimmune/other," etc. Maybe part of it is my philosophical/religious views. Whether someone has down syndrome, is paralyzed, has terminal illness, etc.... I still consider their life to have just as much value as a healthy person. For example, in my own life, I have learned to live/love/give back, arguably MORE than people who waste their healthy lives keeping up with the Jonses. Then in terms of "suffering/quality of life," I think there are are so many factors that go into that (see below), that it washes out the "what if's" of XMRV.

There are so many things out there that could affect quality of life, that could be prevented by choosing to not have children. But at that point, what's the point? Addiction, mental illness, autism, breast cancer, little people.....who should and should not procreate? Where do you draw the line? etc. I'm not saying those conditions are "all the same," but there are varying degrees of risk to the child and varying future implications, if a mother or father had any of those things. So it's "something to chew on," in terms of the moral questions.

 

[CAcfs]

Also, on another note, my husband is just as healthy now as the day I met him. His health is great. If I would have seen his health deteriorate since we've been together, it would make me think twice about even adopting (living in close proximity). But seeing how healthy he is, suggests to me that *if* there's an element of contagiousness between partners, it hasn't affected him.

When you think about it, wouldn't him and I having unprotected sex be about the risk level a baby would experience in the birthing process (so I'm speaking of a situation where the disease wouldn't cross the placenta)? Both require contact with my "birth canal" (sorry!). So I guess if my husband could turn out alright, perhaps a baby could? (this doesn't take into account genetic factors, a newborn vs. adult immune system, etc...obviously)

 

[gregf]

Please know, I agonized for several days before doing that reply.
In the end, I felt it would be wrong not to mention the potential risks.
I respect, even support the decisions of other ME'ers.

So my comments are just the conclusion I have, given the developments of the last week or so.
Of course they do not apply to anyone with, or trying for children up until now.
I hope no one is hurt, I was just trying to provide info on the question.

What we really need to know is, is XMRV endogenous in humans ?

 

[imabath]

I recommend looking at the OFFER meeting on this topic
I also got sick while in high school. My husband knew that I was sick when we married, and his love for me is unconditional. We chose to have children, and understand that ALL parents pass on unwanted genes to their children. I have been pregnant 4 times, and have three wonderful children. With my first pregnancy I went into remission, second pregnancy was a miscarriage in first trimester. Third I didn't feel better nor worse, and my fourth pregnancy was difficult. I did not take any extra medication while pregnant and all of my children are healthy. I also chose to nurse all three of my children knowing that there could be risks. (aren't there risks in everything we do). Try to find a OB who is understanding of your condition.

Before I had my first child I knew I'd never feel better, and we just went for it. It was the best decision for me in that regards. I have spaced my children what I consider far apart because of my illness. I go from times able to leave my house a few times a week to couch bound. I do get a lot of help from my husband and our families, along with neighbors and payed help. I could never do it on my own. My husband is fully in charge of getting my older two out to school. He is lucky to work for a family friendly company that is flexible with our situation. We work together to make our home life happen.

You have to constantly work around your illness while having young children. It is hard, but I am so glad to have my children. We have always been open with them. They know that mommy is different, and not all mommies are like theirs. They are more compassionate that most young children. I see it is all about my attitude about my illness that helps them to learn how to be better people. We don't get out as often as their friends, but we get to spend a lot of time talking and building our relationship. There are so many positive things my children learn from having a sick mother. I don't see how my having children is selfish, as I use most of my energy on them, for them. My life is all about them.

Spiritually it is a decision I have always felt good about. I know that having my children is not physically helpful, but spiritually it lifts my attitude and reminds me of the whole picture. After giving birth to my third child I had a VERY strong feeling that I should have one more child. I do plan on having that fourth and last child when I feel physically able. Morally I see that my parents love and still want me even though I'm "broken." Having CFS can be such a downer, I''m glad to have my children to take the focus off me, and I know they are glad to be alive. My husband comes from a mother who also has CFS and loves her eight children! Seven of the eight are healthy (the sick one has no symptoms of CFS). Maybe that's why my husband was drawn to me.

I am happy to see others opinions on the matter. I am so glad I didn't wait to have children. We are figuring out how to raise our children daily just like every other parent.

 

[helsbells]

I would endeavour not to judge anyone for their decision but in the end that is why I didn't have any, I felt instinctively my particular version would be passed on and felt being a good mum meant not allowing that to happen. Sorry I don't mean to sound preachy but that is how is how I sadly saw it. I also see PWMEs with children who all have issues, some major (and these are life diminishing and painful) but all had them before they were aware of the extent of their own problems. The difference is i would have known the risk i was taking with their health and for all my problems i had a sort of normal childhood, ran about and played and ate what i want. No amount of platitudes could persuade me any different and now the issue has been put beyond reach by age. i also thought a long time before writing this but if I just decided to be honest about it in the end.

 

[CAcfs]

I appreciate people bringing up the risks (thank you), but I could do without the judgment. I am surprised someone could imply I'm acting selfishly without knowing me or knowing anything about my life, family, marriage, or motivations for starting a family. (Diesel's post)

"There is absolutely no problem about waiting except the fact that others and your opinion is based on selfish interests."

All I have to say is, wow. It takes a great lack of restraint and foresight to accuse people that you know so little about.

You seem to have me all figured out (sarcasm). I'm not sure if you are in a committed relationship or not, are male or female, but your comments also come across as sexist (aside from judgmental). When a woman or couple makes the decision to have a child, it isn't the same thing as buying a car. To imply that is the case, draws upon many stereotypes of women as materialistic or not thinking through their decisions.

I put the word "moral" in quotes before "standpoint" and "questions" ("moral standpoint," "moral questions") because I was using it in a more loose and colloquial sense, much in the same way one would use the term "philosophical." It implies SUBJECTIVITY. What I see as right is subjective, based on my life experiences. Subjective perception of right and wrong is all any rational adult can balance before making the decision to become a parent. There are no absolutes in matters like this, despite what you seem to believe and preach to others in online forums. That is, you can't simply label someone as selfish until you walk in their shoes, see the world through their perspective, etc.

 

[CAcfs]

Also, though I may never fully be better, my body seems to be on the upswing lately. That is why I'm considering a pregnancy. I feel like right now, my immune system is strong. I seem to bounce back from things (exercise, etc) very quickly. I have been exercising about 4 times per week. Last time I felt this good was about 5 years ago, and I have spent the last few years wishing I would've had a child then, because I feel that my body was operating well. I can't explain it, it's just a feeling. I may have less stamina and sleep more than the average person, but when my body feels like it's handling life and is in a good place, I want to take advantage. I will only get older, and I'm not sure if in a few years I'll still be feeling that "it's the right time."

Anyone who still thinks I'm trying to plan this around myself and not the little life I could be creating in the future, can go read a depressing sob story about all the selfish women who pass on all their undesirable traits to babies who are wishing they could have somehow been consulted before becoming who they are (I say that only to bring up the absurdity of the notion).

 

[Jemal]

Ideally, yes, we should wait until more is known about this virus and the connection to CFS. But many of us have already spent so many years waiting for treatment or cures. It could take a decade before more is known (everything is possible with this crazy disease). I have noticed I have the tendency to place my life in a waiting room: I don't dare to do certain things anymore, because I am ill and I am waiting for treatment. I am actively trying to combat that in myself. I want to live and not feel like a zombie. I know that I wouldn't postpone trying to get pregnant. This is one of life's great choices (trying to get pregnant, it isn't even a guarantee you will) and I would hate for people to miss out, because of this disease.

Now, if it was 100% certain that the child would get sick or would become miserable, then I might think different about this situation. There are a lot of people with CFS however who have healthy children. And they can also take care of their children.

 

[helsbells]

CAcfs Im certainly not judging you, just talking about my personal situation. Also you sound in a very different place healthwise than I am and have been in fairly consistently for about 13 years. I think thats part of the problem with lumping us all together. I knew emphatically simply from the way I felt on a day to day basis that the odds were heavily stacked against a favourable outcome. The being able to take care of a child was a whole other story. I am largely housebound with a whole host of complicating factors so for me the issue was perhaps more clear cut. Still a very sad decision but one perhaps for me that was inevitable. Good luck with whatever you decide.

 

[Jemal]

Breakthrough, yes. But there have been more supposed breakthroughs in CFS. And it could still take a decade, before scientists have figured this out. I am a total XMRV believer, but I also have hundreds of questions and the scientists can't answer most questions yet.

I think mothers pass HIV to their child in 1 in 4 pregnancies.
If we had such data for XMRV and it is proven the mother has XMRV and it is proven the virus causes lots of problems in most people, then it would become difficult for me to understand why people would still risk a pregnancy, without protective measures (though legally this is still allowed in most countries I think).

There's no such data however. At the moment we are groping around in the dark...

Don't let this disease completely rule your life.

 

[CAcfs]

"The problem is that you are not able to give me a non selfish reason why you should get pregnant now"

I am, I just do not feel like sharing it here, because I don't feel like my life story is any of your business. Besides, we obviously have different philosophical views, so I think we should leave it at that.

Also, you might not have these opinions if you knew more about my life, previous decisions I have made, etc.

I may be avoiding this forum....there are too many negative vibes here. I am not saying that because of the comments warning me about the dangers, I am saying it because I don't like forums where people pick each other apart. Thanks anyways, everyone. And thank you to those that had constructive things to say, on either side of the issue.

Diesel, I interpreted the one comment as sexist because we were speaking about pregnancy, which implies only one gender. The stereotypes I am referring to are things like, "Oh, she went to college for her MRS degree," and the stereotype of a woman who doesn't want to make the money, but spend it...live the easy life, etc. That is how I read your statement because it seemed very directed at me and negatively opinionated, after I had shared that I'm female and wanting a baby. I apologize if I got you wrong. I can see how that statement would apply to a man too now.

It's kind of like calling an African American man "boy." Even if you would have said "hey boy" to a white person, it brings up negative stereotypes when said to an African American (slavery, black people as servants, etc), so one should avoid saying that to certain groups if you want to avoid the chance that someone interprets it offensively. It's not really anyone's fault if it wasn't MEANT offensively, it's just that it is easy to misinterpret some things depending on who it's directed towards, and then when the overall tone of the conversation is negative anyways, that doubles the chance it'll be taken wrong.

 

[Dainty]

CAcfs, I'm sorry you've been hurt by some of the responses here. If you feel you shouldn't stick around because it is too difficult on you then we all understand and wish you the best. *hug*

Diesel, there's nothing selfish about being a parent, as parenthood is a journey of sacrificial giving of yourself into the life of another.

Perhaps one day CAcfs will have a child and when s/he gets old enough she can tell her child about the person on the Internet who didn't think s/he ought to exist.....purely out of concern for him/her, of course.

 

[CAcfs]

Dainty,

Thank you so much for your comments. I agree wholeheartedly with what you said, about parenthood not being selfish. I think the decision to become a parent is easily misinterpreted by some people, who aren't living inside my head.....if that makes any sense. But it feels good to have someone stick up for me. It makes it feel more like an actual "support" group. I need understanding, not assumptions and judgment. Thank you for the hug.

I have been having a rough few days emotionally, and part of it was because of what's been implied about my character in this thread. It's not WHAT was implied, because I know it isn't true. It's just knowing that there are people out there that will assume the worst about me. That in itself is hurtful, when you are expecting support. Maybe I shouldn't have responded, once hurt, because that only drags the drama out more, but I can't really apologize for it either, because I feel I stated my feelings and didn't resort to personal insults. Maybe I'm making too big of a deal about the whole thing......and for that, I am very sorry. I have been very emotional, so I'm not sure if I am misinterpreting things. I am probably just too sensitive. The whole topic is difficult and touchy.

I actually almost terminated my last pregnancy, even though I wanted to become a parent. The reason I thought about terminating (having an abortion) is that with the last pregnancy, I was worse off health-wise, and I didn't think any child deserved being brought into the world, if what I did have was contagious. My doctors came up with a plan of antibiotics (we were dealing with a bacterial origin, Lyme, at that point as the main cause of illness), and convinced me that there was virtually no risk.

That whole process taught me a lot, and changed me as a person. I now see "the miracle of life" differently.

These are my feelings on the issue. I may not check this thread much anymore, because I'm not sure how much more productive that would be for me, with how personally I tend to take things. I'm really not trying to stir anything up, and I don't want to continue to promote unproductive "back and forths."

I think agreeing to disagree is the best that this thread will come to. I try to only put out love and positivity to others (even if the facts are not positive, the emotions are geared towards productivity and understanding), and I don't like receiving negative emotions like judgment or lack of faith coming back at me. Some people might be able to handle that, but I don't do well with it.

There were only a couple comments that I feel crossed the line of "productive understanding," so I don't want everyone to feel bad. Like I said, I'm a sensitive person, especially depending on the day.

 

[illsince1977]

CAcfs - I, for one, would hate to see leave us.

Diesel - I personally feel you have attacked CAcfs, and though I'm sure your bad behavior emanates from your own pain, I find it inexusable to add to her anguish. Yes, in case you wondered, I am scolding you.

Am I the only one, or has anyone else noticed this "debate" drawn down gender lines, where most of the men who have given their opinions tend toward not being understanding and the women tend towards being sympathetic to her dilemma? Actually, this is not a debate, it is someone's life.

My husband and I have told our children that it was a good thing we didn't wait to have them, because had we waited we may have decided against having them due to my deteriorating health. My children ARE NOT A MISTAKE! They are wonderful human beings who are the wonderful, strong people they are partly because I was sick. It is incredibly arrogant for anyone to suppose that they know anyone else's heart and life. Maybe one of CAcfs's children will grow up to be a scientist whose research will save millions from lives of suffering some day.

I hope you haven't left us too soon to read this, CAcfs. I am in the worst pain I've been in in months today, but once again felt compelled to chime in.

 

[Overstressed]

Am I the only one, or has anyone else noticed this "debate" drawn down gender lines, where most of the men who have given their opinions tend toward not being understanding and the women tend towards being sympathetic to her dilemma? Actually, this is not a debate, it is someone's life.

Hi CAcfs, illsince1977,

I'm a man and struggling with the same problems. I became ill in 2007, infected my wife(not via intercourse!) during my acute phase of infection, and here we are, 3 years later. We both want a child very badly, and I'm still puzzled of what to do. Although I'm ill, I am not (yet) in the situation most people here on the forum are. My wife and I still work full-time, and travel both 2 hrs to our work, daily. My wife doesn't think she is ill, she feels fine(her words). She's a teacher, and loves her job, but also has a lot of stress.

Now, while we want to become pregant, I tried to learn as much as possible about pregancy and retroviruses. And to be honoust, there is no answer that is 100% for sure. After 3 decades of HIV, there are still many questions open. I highly doubt we will receive the answers soon. XMRV is often lately compared to HTLV. Well, when you have to believe the research studies conducted on HTLV and pregnancy, it looks like HTLV is seldomly related to infection during pregnancy. More, there is evidence that it happens through breastfeeding the baby. There are cases described that the baby clears the virus on it's own(yes, that does exist). Also, you can cut the risk a bit via Caesarian section. And I also believe that the love for your baby-to-be-born can cut the risk also. Remember: mens sana in corpore sano!

Maybe we should avoid to play God himself, and leave it up to Mother Nature, maybe with a little help of ourselves.

I truly -from the bottom of my heart- wish you all the luck in the world with your pregnancies(yes!).

Stay with us, and keep us in touch,

OS.

 

[Jemal]

Am I the only one, or has anyone else noticed this "debate" drawn down gender lines, where most of the men who have given their opinions tend toward not being understanding and the women tend towards being sympathetic to her dilemma? Actually, this is not a debate, it is someone's life.

I am a man as well and I have saying all the time to the topic starter: go for it, don't let this disease hold you back. So I don't think things are as black and white as a gender line

 

[ukxmrv]

Diesal,

It's going to be more than a few months. It could be years and sadly our fertility window may be only open for a short time in females. Dr Klimas said at the CFSAC meeting yesterday that women with CFS were entering menopause 10 years before the norm.

In my case my fertility window "failed" and I simply could not carry a pregnancy.

My advice for people who do want to have a child is to consult a Gynecologist who deals with AIDS patient. I did see one and she was experienced with AIDS women and how to best avoid transmitting the virus to a child. They do exist.

Also consider other ways of having a child such as using a surrogate. Think about banking eggs now if you can.

If infected with the virus (and especially if both of you are), it may not be easy to have a child at all.

Obviously I've had the test now, so I know that there was a risk I could have passed this on. I feel terrible about it - a huge mixture of emotions. Grief, anger, relief, guilt and so on.

XMRV+