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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

Discussion in 'XMRV Testing, Treatment and Transmission' started by CAcfs, Oct 7, 2010.

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  1. rwac

    rwac Senior Member

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    There's a good chance that a few centuries ago, people with CFS would not have been ill in the first place. If you read Dr. Deckoff-Jones blog, XMRV may well have arisen accidentally in certain vaccines. So Modernity is a blessing and perhaps a curse.
     
  2. Fejal

    Fejal *****

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    Waverunner, good to have some agreement.

    fla, a little hard to follow but I get your point. Best not to spread cfs vulnerable genes around.

    rwac, evidence that XMRV matters at all is nonexistent. More likely, other vectors are activating the vitamin D receptor and NF-KB pathway and XMRV happens to be around and coincidentally is promoted by it. So far it isn't listed as activating these pathways themselves and hasn't been shown to have any virulent effects in diseases where it is found. So for, I have to conclude that it's just a marker of other pathogens who are the virulent ones. I hate to do this because it probably torpedoes my workman's compensation case but it is what it is.
     
  3. SOC

    SOC Moderator and Senior Member

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    It's been a while since I've run across such an ugly and hateful thread on PR.

    While there are some disabled persons who wish they did not exist, the vast majority -- including many who are much more disabled than most ME/CFS patients -- are glad to be alive. The idea that the possibility the a child might have ME/CFS should preclude an adult from procreating is patently absurd.

    I am a PWC with a child who is a PWC. We both had the same very sudden onset illness that initiated (or triggered) our ME/CFS. Were we genetically predisposed to this illness? Quite possibly, since my uncle also has ME/CFS.

    My daughter is a wonderful young woman. She has always been loving, well-behaved, and intelligent. She is an excellent swimmer and was a well-loved swim teacher. She played tennis and now, even though she can't play much, is still a coach and manager with her tennis club. She is currently an engineering student at a top-ranked engineering school. Is it harder for her than for other people? Yes. Does that stop her? No.

    Should this lovely, charming, intelligent girl not have been born because of the possibility she might develop ME/CFS? Of course not. As it turns out, she did develop ME/CFS, but she is no less lovely, charming, and intelligent because of it.

    If everyone who might pass on a genetic susceptibility to a serious illness refused to procreate, there would be very few children born every year. Think about it. If every family line that had cancer, heart disease, diabetes, MS, autism, psychiatric illnesses, etc, in their family line refused to procreate, who would be left?

    I'm sorry that you have such a miserable existence, Fejal, that you think it would be better not to have been born. That is not my experience, or that of my daughter, or my uncle, or even most of the PWCs in this world. Maybe you can find a way to have a happier life, even with ME/CFS. It's possible. Look around.
     
  4. insearchof

    insearchof Senior Member

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    Unless I am mistaken there is only one genetic study on CFS patients and I am not familiar with it's findings so cannot comment there, someone else might be able to. But if I am right, one study is not a lot to go on.

    I was not suggesting your parents had ME. The points I was making were:

    1, is there nothing of value in your life that you could point to and say, despite this illness I am glad I was born in order to experience that

    2. Adopting a child will not mean that it will be.immune to illness or suffering. There is also a chance that the adopted child could become ill

    There are no certainties in life .

    As for your views on this being a support thread with only one view being desired here, if that was so you or your position would have been completely ignored and I have seen quite the opposite.
     
  5. markmc20001

    markmc20001 Guest

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    I think part of the reason for the conflict is coming from Fejal giving an honest opinion. If we were all at a dinner party and the subject came up, most people would try and give a compassionate response maybe even if it were not an honest opinion. The other response might be to not say anything at all if they thought it might be controversial.

    I guess it's part of why we come here, to get different opinions and information. Makes for some interesting and heated discussions at times though.
     
    Ocean likes this.
  6. SOC

    SOC Moderator and Senior Member

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    If this came up at a dinner party, I would still consider Fejal's response offensive. I would also consider it offensive if someone suggested that a biracial couple shouldn't have children because the child might suffer "because they wouldn't fit in one race or the other". Or that a couple with a sibling with MS should not have children because their child might have MS (or pass along the gene).

    The problem comes with the assumption that people with health problems should not be allowed to exist. Or that their lives are not worth living. That is appalling. The Nazis and other "purist" groups have advocated involuntary sterilization of people who they felt contaminated the gene pool, including people with health issues. As a world society we have rejected that idea as fundamentally offensive.

    Yes, everyone is entitled to their opinion, no matter how ugly. Everyone else is also entitled to point out that the opinion is ugly and offensive. That's free speech.

    The difference between a forum and a dinner party is that when people express offensive opinions at at dinner party ("Your child should never have been born because you have X in your family and are therefore contaminating the gene pool"), they would never again be invited to a dinner party with the group. In a forum, we have to keep listening to such offensive opinions unless this group as a whole decides not to listen to extremely discriminatory speeches.

    If someone repeatedly argued that black families should not have children because their children might suffer more than others in today's society, or that they would contaminate the gene pool, the moderators would likely put an end to it. Why do we have to listen to the same type of obnoxious discrimination about people with health issues or disabilities?
     
  7. Kina

    Kina Moderation Team Lead

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    If somebody was at a dinner party at my house and referred to people with intellectual disabilities as "retarded". My intellectually disabled daughter would have to listen to that kind of derogatory language and would be very hurt by it. I wonder if Fejal would suggest we have her "fixed" in front of her, tell her she's not worthy etc. She is just as worthy a human being than anybody else. I find Fejal's comments offensive and disgusting.

    Oh and then there's my nephew who has ring 22, he is severely delayed, can't speak but as happy as happy can be. He is just as worthy as any other person on this planet. Perhaps we should have him put to death along with my daughter just like the Nazi's used to do for not being perfect. Ring 22 occurs during the first few splits of the embryo, cause unknown, not his fault or anybody elses.

    I used to work with a developmentally intellectually delayed woman who was raped. She decided to have the child -- should somebody have told the "retard" that she shouldn't have this child. Well, she did. The child was born normal and is now attending University. The community helped this woman raise her child.

    Discrimination against those with health issues and disabilities is not acceptable and it's a form of abject bigotry.

    Sorry for being all angry and sarcastic but some of the comments here really upset me.
     
  8. Fejal

    Fejal *****

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    Well sickof perhaps you need an analogy. The choice basically is if you had two children, one with cfs and one without, and had to sacrifice the cfs one to save the unafflicted one's life (and the life of their offspring) would it be worth it? Of course the answer is yes, but it's not an easy choice for attached parents to make. I'm not surprised you have trouble with it. When you argue for the cfs/genetically doomed child then this is the choice you're making except in reverse, you doom their children. But some sacrifice has to be made to have fitter children. We pay a price either way, it's just one way improves the race, the other weakens it.

    Don't shoot the messenger.
     
  9. Dainty

    Dainty Senior Member

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    Eugenics is a legitimate debate, but it does not belong on PR. Further discussion of it will be removed.


    The question is: Should a CFS female have a baby?
     
  10. floydguy

    floydguy Senior Member

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    Eugenics aside...For me (and maybe others) the annoying thing about this thread is that having children is about is as far from reality as a discussion about enrolling in the Hawaiian Iron Man competition next week. The undercurrent is the divide between those who can function and those who cannot (or barely function).
     
  11. insearchof

    insearchof Senior Member

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    Hi Floydguy

    Enrolling in the Hawaiian Iron Man competition reference made me smile.

    Your right about the divide. Its there and will always be there - because whether you have ME CFS PVFS etc - they, like many illnesses illicit a spectrum of severity in symptoms amongst sufferers. Its just bad luck that there are those of us who are at the severe end of the scale, and who have effectively had decisions like these made for us.

    Whilst I might not have the health to currently consider something of this nature, I dont begrudge those who's health has improved enough to be able to contemplate such.

    I would like to think that I might be in a position to contemplate something similar one day too.
     
  12. floydguy

    floydguy Senior Member

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    Having a baby or participating in the Iron Man :)
     
  13. insearchof

    insearchof Senior Member

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    I think any woman would tell you, that the physical process involved in the later would be infinitely easier than the former :p


    So I will aim for participating in the Iron Man Challenge (female equivalent thereof) and go from there :)
     
  14. Dainty

    Dainty Senior Member

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    I know that for me, even though I am too severely afflicted to consider the decision now, I still have hope that I can recover enough to wrestle with this issue. In effect, pondering the matter and reading the information and discussion on it is a manifestation of my hope for wellness, if that makes any sense at all.

    Or I could just shoot for the Iron Man...
     
  15. ukxmrv

    ukxmrv Senior Member

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    The problem with the Iron Man analogy (and it's a good one though!) is that when I looked it up there were mentions of older athletes. I've now lost all my fertile adult years to this disease - as I'm sure many women have as well.

    If I were to magically recover I'd not be able to have my own biological child.

    Yes, there are donor eggs, surrogate mothers, adoption but this is the UK where things are expensive to impossible to unlikely (and yes, I've looked into this).

    The sense of loss over all the different things we lose to this disease as times goes on just gets worse.
     
  16. SOC

    SOC Moderator and Senior Member

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    Leaving eugenics in the roadside ditch of this conversational journey, I think there are several important issues to consider:

    1. Based on what we know now, the likelihood of the child of a PWC parent developing ME/CFS is far from 100%. Are you willing to give up parenthood entirely because there's a, for example, 1 in 4 chance that your child will develop ME/CFS some time in the future? Is a 3 in 4 chance too high for you? Even if the child did develop ME/CFS, what is the likelihood that s/he will be completely disabled as opposed to being functional? Where that line is drawn is a very individual thing, but every parent faces the possibility that their child will be disabled, so you just have to decide how much risk you're willing to take.

    2. We don't know what, if anything, is "inherited" in ME/CFS, so it's not clear whether "inheritance" can be minimized, or for that matter, even exists. If XMRV is the cause, then it may be possible to minimize the chance of transmission like they do with HIV. An experienced retrovirologist (Dr Klimas comes to mind) might be able to provide some knowledge and wisdom on this question.

    3. Antivirals stop replication of viruses. I think ARVs do the same. It would be extremely dangerous to the baby to take AVs or ARVs when you are pregnant. Anything that messes with cell replication wouldn't be good. Again, a good retrovirologist could easily provide you with that info.

    4. A potential parent needs to consider whether they can provide appropriate care for a child, whether that care comes from a mother, father, grandparent or paid caregiver. If you cannot provide appropriate care one way or another, you should not have children, IMO. Fortunately, there are lots of options. :)

    5. Treatment of ME/CFS and associated infections (herpesviruses, enteroviruses, coxsacki, etc) will be very different in 10 or 20 years than it is now. We see significant changes already. Is ME/CFS likely to be a life-destroying illness in 10-20 years? A potential parent just has to make the best guess they can about what the future will hold for their children. This is true for ALL parents, not just PWCs.

    6. It is always wise for a woman to be as healthy as possible at the time she becomes pregnant. For a PWC, I suggest that means dealing with secondary infections before pregnancy, and making sure your nutritional status is excellent. A good ME/CFS physician will probably have more suggestions. :)

    So, if it were my friend or family member who was a PWC considering having children, I would suggest that it's reasonable to consider having children, but as in the case of all serious illnesses, they should have a detailed discussion with a knowledgeable doctor (I would recommend Dr Klimas) long before they become pregnant to make sure they are doing everything they can to give their baby the best chance of a happy, healthy life. That may include monitoring and early treatment of ME/CFS related infections.

    FWIW~ some anecdotal data
    I have a friend with 4 children; she chronic lyme. One child has chronic lyme also. That daughter has 3 children (so far) who are all healthy and happy. Both mothers are receiving treatment, mostly antibiotics. My friend is the most disabled and she is not even housebound.

    In my family there are 3 people with ME/CFS -- only one in each generation, which is not bad odds. All 3 of us have chronic HHV6 and/or EBV and have received antiviral treatment. I am the most disabled and I am largely, but not entirely, housebound and am still improving. The others are functional at 90+% and 75%(still improving). I blame my poor condition on bad management in the early years of the illness -- something a parent can help their child avoid with monitoring and early intervention.
     
  17. Fejal

    Fejal *****

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    My two concerns are that some forms of CFS/ME are likely transmissible and that a patient wouldn't have the energy to do a good job at parenting both in physical care and to pay enough attention to let the kid feel that they are loved. Heaven knows with ME I can barely take care of myself. The thought have having a kid is totally unrealistic for me.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    I thought aquariusgirl's post was a good one as I myself have methylation issue and a problem with my folate absorption due to it, hence ended up with a daughter who has similar to spina bifida. It was my own health issues which has given her life long disablity (which she blames me for!! telling me I should of aborted her and telling me that having her was wrong....... that is on the rare occassions she speaks to me. As the CFS/ME stopped me being able to look after her for some of the time she was growing up as I was left bedbound for almost a year.. she blames me for that too. The CFS/ME left me unable to even be able to hug my own daughter as touch was too painful or communicate to her some of the time)

    It makes sense there would be more disablities in our children if in fact most who have CFS/ME have methylation issues involved with it. Unfortunately as far as I know, no studies have been done on the risk of our children getting issues due to us. Sadly my own daughter could of been born healthy instead of facing lifelong pain and disablity, had I known I had methylation/folate issues and then taken the right things for this issue.

    At least one study has shown that those who have CFS/ME have a one in four chance of having a child with CFS/ME. From what ive seen there also seems to be more Autistic children born to those with CFS/ME.

    I strongly suggest since you've also lost a baby already, to be checked for things like MTHFR polymorphism and other things which can cause miscarriages and hypercoagulation. Hypercoagulation is very very common in CFS/ME (I would suspect that those who have CFS/ME have a much higher chance of miscarriage).

    best luck
     
  19. eric_s

    eric_s Senior Member

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    Nothing personal, Waverunner, i just found that thread after clicking on "user's posts". And it seems to be the thread that made Sickofcfs leave, which i think is a sad thing, by the way. Everybody is free to think what he wants, but here i just have to add my take. And after this, i hope i can leave this thread again, because it makes me sick too.

    70 years ago in Germany that sort of philosophy was very popular. Sorry if that's offending you, but check the history books. Another, better philosophy prevailed, that of the (back then) more civilized and human parts of the world. The Nazi ideology went to the wastebin of history, luckily.

    Yes, i'm sick, but i refuse to die... And you know what, if they can fix me, or even like that, i can do a sh*load of useful stuff, so it's in everybody's best interest i'm around ;-)
    And even if it were not, we're human and not robots. And probably for a good reason. A group of people who also have hearts and don't see the world in such a simplistic way, will probably have the greater probability of survival than a group of inhuman sociopaths. And that's what somebody is, to me, who wants sick family members, friends or whoever to die. I agree that if you know for sure your child will have a really bad disease, you should not have one. But that's a different question.

    And by the way, it's not the strongest who prevails in evolution. If it was, the dinosaurs would still be around. Instead, us humans have been by far the most successful. Beacuse we are intelligent and very good at adapting. Basically, it's the one who has the most offspring who survive long enough to have a lot of offspring themselves who is most successful. If i'm not mistaken.
    Neanderthals were stronger than us as well. I don't think there's too many of them left.

    Even though i'm sick at this moment i refuse to make way to somebody else who thinks he's stronger or whatever and has more right to survive. That person can come and check ;-) I'm here to stay. If he's stronger i'll be smarter or whatever it takes...
     
  20. Graham

    Graham Senior Moment

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    The assumption about "the survival of the strongest" etc. fails to take into account one very real fact. Throughout the history of mankind, a disproportionate number of thinkers who have transformed our existence have been handicapped or hit by a major illness. Let's just mention Stephen Hawking, Isaac Newton, Charles Darwin, Florence Nightingale (not for carrying a lamp! She was the first woman member of the Royal Statistical Society for her analysis and reform of hospitals) - do you want more?

    Actually, studies on primates and the way that their brains develop suggest that it is our social cohesion, and our willingness to look after all of our people that has helped us survive. It is our brains that are the key to our success, not strength. We weren't exactly terrifying beasts on the plains of Africa. There was a discovery recently of fossilised bones of an elderly caveman. Clearly he had lost most of his teeth many years before, so had been unable to eat normal food (and presumably wasn't much use on a hunt either). Scientists can only assume that others in the group had chewed and pulped the food specially for him.

    It is quite scary that some people have this strange awe for perfect bodies, but are blind to our need for thinkers. Our strength is our adaptability and strong sense of society. Who would you want as a doctor - one with a perfect body, or one with empathy and compassion?

    As to whether a woman with ME should have a baby, it's impossible for me to say. Surely the most important question is what is the support structure around the woman like? Is it dependable, solid and are there enough people to spread the load? There aren't any real facts about whether ME can be inherited (and as my son and I both have ME, believe me, I have looked). Does it break my heart that he has ME? Of course. Would I or he prefer that he had never been born - you have to be joking!
     
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