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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. insearchof

    insearchof Senior Member

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    Fejal,

    I understand where your coming from and some of your concerns are legitimate, but I think your assuming that CAcfs has not accorded them serious consideration, and yet, from all accounts - I see her doing just that.

    For all the reasons why she ''should not' have a child, there are also compelling reasons why she should, if she so desires and is responsible in the managment of that desire - which I see she is doing very nicely and in a very balanced manner.

    A wonderful suggestion for anyone who feels the weight of impending doom being peddled about today. The world needs more optimism and hope.

    Most children are a joy and a precious gift. They have their own special reason for being given a physical incarnation and if Mark's observations of these children are generally representative of children born to those of us with ME, then how can their births be anything more than a healing gift?

    Thanks for sharing this Mark, it made me very happy.
  2. Fejal

    Fejal *****

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    I don't think that "supportive" posts are always in the best interest of the person. Moreover, if your bad advice fails then I bet you're not going to be responsible for the consequences.

    Actually I didnt say that, you are making a red herring but aside from that it is a good question. If two parents have no redeeming qualities, say two disabled retarded individuals with the gene for breast cancer, is there any benefit to the population for having them reproduce? Actually there isnt. It is just a waste of money and they should be discouraged from breeding. You cant have a fit population breeding the worst traits possible and evolution isnt about fairness, its called survival of the fittest for a reason. Why do you think successful appearing people are so attractive? Instinctively we know that they are good genetic partners likely to pass on their advantages to their offspring and want to use that to our advantage. Rejection hurts because we are being told we lack desirable traits by someone we desire.

    It would be a good idea for governments to give some individuals money to not have children, say a tax break of $3000 per year as an incentive not to do it in consideration of the health care and support savings for the government down the road. Also, the goverment should provide free sterilization. This would help the disabled and be a great deal for the government.


    Im concerned that many of these infections are asymptomatic so if someone starts off with Epstein Barr virus they could have a hidden infection. After all, there was just study showing many cfs patients are really chronic lyme disease patients. The same is true for bartonella and we could also add anaplasma and erlichia to the list. MDs are not trained to diagnose these stealth infections and they certainly dont uphold their responsibility to read and use new research. I've been to many and most are happy to stick CFS patients into the trashcan diagnosis of CFS, refer them and making money by milling patients rather than waste time in something they aren't equipped to treat. It is only when you specifically ask for certain tests and demand care with a good response to their objections will they bother to give any care. Perhaps if someone is recovered after five years. But to advise someone in the throes of CFS that its ok to have a baby, thats scary.

    >4. Proper planning and a supportive network of family and friends will enable any disabled parent (whether they have ME or some other illness) to care for a child.

    http://www.family-friendly-fun.com/disabilities/parenting.htm

    The article goes on to discuss the legal concept that disabled people have the right to parent but this doesnt mean that society has the legal obligation to ensure that these individuals are adequately cared for.

    I dont trust the USA to take care of the disabled in this way, especially in the time of a health care funding crisis. Really, whats the point of having children in this condition anyay? Better to get a plant and volunteer to help some else's kids-provided they will have you. There are plenty of parents who would love help from others. Parenting is overrated as a source of happiness. Adults don't need it to have a good life. It is a crime that the merchandisers of society have brainwashed everyone to think that this is a requirement for a happy life. In fact, it's better to look at it as a second full time job.



    Contrary to insearchof's religious beliefs, many kids are unwanted accidents or mistakes by pitiful, lonely parents who are destined for suffering, mediocrity and death. Perhaps kids chose pre-birth to suffer because they need to learn empathy but parents would be much better off getting counseling and learning to be happy rather than adding to their burdens with kids. The research is clear that they are being tricked into parenting by society rather than having their expectations met, and the outcome isn't pretty-neglecting parents with damaged children when then continue the cycle of misery by having damaged children of their own.

    In my opinion, there is little point to a long life full of suffering, better to keep it short and manageable unless there is the potential for continued personality development in positive ways. But a lifetime of suffering with no development is just cruel. In this way, fatal diseases can be our allies.
  3. Tulip

    Tulip Guest

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    Bloody hell fejal
  4. insearchof

    insearchof Senior Member

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    No I agree, that supportive posts for the sake of being supportive, may not be in a persons best interests, but I dont see that in this thread.

    I offer up my observations and suggestions for people to consider (or not) as they wish. I acknowledge their intelligence and respect their right to make choices and discern what is in their best interests. I cannot be held responsible for the informed conscious choices others make, nor do I believe my views or the views of others here, hold the significance and weight, that you are purporting to assign to them. CAcfs strikes me as an intelligent and well balanced young woman. If this was a forum for the mentally ill, then perhaps I would consider your opinion on this point, as having a little more relevance and merit.


    This is ideological and false premise.

    Redeeming qualities can always be found, whether however, they can be applied by the individual is another issue.



    I would have thought that by widely breeding, genetic defects would be diluted and be bred out. Isnt this what evolution really entails? A live and let die, approach which produces an adaptable species? So my answer to this question, is most definitely - yes. Retard individuals, as with all persons exhibiting disability, contribute to our humanitarian evolution ie: our compassion, empathy, perspectives on life, etc. They are as important to humanity as any able bodied individual, and arguably far less destructive.



    That is an interesting observations, especially on the issue of rejection.

    Attractiveness however, is subjective and not all people are attracted to another, based on success or power In fact, take a male who exhibits such traits. These traits might make him successful in a sociopathic corporate climate, but they might not easily translate across into a social setting. Such traits could make a man emotionally unavailable, lack empathy, be incapable of nurturing and be abusive. This may result in the dissolution of his family and if he is unable to find a suitable mate/sustain supportive friendships, may result in his early death.I do believe there are studies in support of this position. So successful traits are not necessarily, ipso facto, desirable if you wish to get into a discussion on genetic determination and suitability for breeding a super race. However, we live in a free world and not one ruled by neonazi supremists, thankfully.


    As for hidden infections, these can also be investigated by Cacfs, if she so chooses. However, the difficulty there lies in the fact that they are stealth infections (hard to detect) and many are probably not really recognised by mainstream medicine. It is a rather obscure matter, with not a lot of strong medical evidentiary support, as I understand it. You also speak about recovery after five years, but this is not supported by the medical literature with regard to ME. Some children and the rare adult, have been known to recover in the first 5 years, but the literature also points out that it is not uncommon for these individuals to succumb to relapses later in life. That is, after all - one of the hallmarks of ME as discussed by Ramsay. Total recovery from ME is not acknowledged.



    If a society acknowledges the right to parent, it generally supports and underpins that right with associated legal rights with respect to support services, whether you have a disability or not. Where you do have a disability, the law makes the individuals positions that much stronger ie anti discrimination laws. So I disagree entirely with that observation.


    Thats a fair point and observation. In Australia funding for disability support services has been neglected for some time. The vulnerable and marginalised in society are often soft targets when it comes to government cut backs. However, I am sure that CAcfs and all of us who are disabled and may be considering the life choice CAcfs and her husband are, would be well aware of this. Having a family demands sacrifices - monetarily and otherwise - irrespective of whether you are ill,/disabled.


    ME is a condition which has a spectrum of severity. Your comparing your own health to that of someone you dont know Fejal and making a judgement based on that, which is clearly a very flawed approach.



    It may be for some, but for others it is anything but and adds richly to life. It is probably hard to appreciate this, unless you have a family or have had involvement with guiding young lives. Children are hard work, but the love and joy they give - is more than worth the effort, I personally believe. Though I understand that not all people like children. Thats ok, you dont need to, but you should not make others wrong for doing so - simply because they do not fit your ideological model of how things are and should be.



    True, some dont and then again, some do. We are all different, with different desires.
    Society is made up of differences.


    I am not entirely sure that this is true. It might be more accurate to say, that it is a model that is highly regarded and sought after by the majority and therefore, living in a consumeristic society- there is a lot of marketing targeting the promotion of this as an ideal - and on selling its benefits/associated merchandising.

    Parenting is not something that anyone can really prepare you for, and for some people it does come as a shock realising that it is, as you say, a second and for some, a primary full time job. However, I dont know too many people who would gladly give it up. Hard work - of any sort - always has its own rewards. Parenting is no different Fejal.
  5. insearchof

    insearchof Senior Member

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    This seems like a teensy bit of a generalisation, dont you think Fejal?

    I have no knowledge of how many preganancies are unplanned, but I dont think there is an association between that and the parents being either pitful or loney. However, what is being discussed here are PLANNED pregnancies Fejal.

    Nor do I think research has developed to the point of sophistocation that it can determine the future or destiny of the parents involved in an unplanned pregnancy ie destined for suffering, mediocrity or death.

    As for suffering and death - they are an undeinable part of the package called life. Death is inevitable and ironically, we get closer to it from the very moment of conception.

    As for suffering, I dont know of any living thing, in which some form of suffering or disadvantage, has not been observed in it. Human beings are no better or worse off in that regard. All of life is a mysterious fragile balance.

    No one is forced to live a life of mediocrity, (especially in developed nations) and so be destined to it. as you suggest. Individuals who end up there, can do so largely by personal choice.

    I dont recall having discussed my ''religious beliefs''. I do recall making reference to children having a unique purpose, which is based on my spiritual ideology - again, however something I have not discussed here.

    Children can also be ''happy accidents'' too Fejal. Life is full of unplanned and unexpected moments - which can bring joy and reorientate our life paths and invigourate us in the process..... and children who come into the world this way, can also produce this happy outcome.

    Irrespective of your preferred religious, spiritual or philosophical bent - it is generally acknowledged that the unplanned aspect of life - may be an important part of the equation, and may simply mirror the mystery, and unknownable aspects of life itself, which can - if you open yourself up to it, - add to the wonder and joy of life itself.



    I am not sure that the weight of research supports this at all. Your also forgetting Fejal, the biological instinct for procreation. I believe that is a built in biological mechanism, to ensure the survival of many species, including human beings. Therefore, it is not simply about social conditioning and irresponsible unhappy people, filling the void with children.



    There are many spiritual and philosophical arguments which would suggest that much can be attained from the path of suffering.

    As for keeping life short and managable, if you respect the santactity of life - the duration of it, is not something within ones control and the degree of control we exert over our lives to try and keep it managable, is also limited. We cannot account for all the unforseeable contingencies. It's better to 'go with the flow' than try to control what is clearly outside our capabilities to do so - as that only leads to unhappiness in my view.

    However, there is always the potential for continued personal development in positive ways and ironically, suffering provides the perfect opportunity for such.

    Therefore, it is possible to contend that there is no such thing as a life time of suffering with no development or no purpose. A life time of suffering with a choice not to grow and develope, would be a personal choice and I might say, one that might lead to further suffering and unhappiness. I believe that if you make a conscious choice for development, some of the suffering and a lot of discontent, can be aleviated.

    Lives are not destined to be locked into a continuous state of unahppiness. Happiness is a choice. I heard it said only yesterday, that life is really about choice. If that is so, then a happy life, would consist of making a conscious choice for happiness.

    CAcfs is doing just that - her choices are informed. She is open to and entertaining all views, (yours included) and assessing them consciously and responsibly giving due weight to all parties intimately involved in this decision and then she will make choices that support a happy life for herself and her family.

    This is the right life gives her, and us all - the right of conscious responsible individual choice - based on our own consciences and shaped by our own unique values, morals, religious/spiritual/philosophical views. Therefore, her decisions and choices will not be the same as yours or mine - but that is not to say that they are less valid or correct especially when applied to a unique set of personal circumstances that we will never be fully appraised of.
  6. urbantravels

    urbantravels disjecta membra

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    Wow, Fejal, just wow.

    You do realize that what you are advocating is called "eugenics"? Read a little history. It was actually a widespread concept among American elites at a certain point in our history; but today it is recognized as a hideous and unacceptable violation of human rights for governments, medical establishments, or anyone else in a position of power to try and dictate who is and is not "fit" to have children.

    In the early part of the 20th century in America, the idea of "eugenics" led to such charming practices as involuntary sterilization of the mentally ill, the imprisoned, and other "undesirables" such as immigrants and racial minorities (google "Mississippi appendectomy" for some documentation.) The idea that we can clean up the human race by discouraging "imperfect" people from breeding tends to lead to the idea that we should actively prevent such people from breeding, and then there's one further step after that if you want to be really logically consistent...

    A certain historical horror gave the eugenic idea a really bad name, and you don't hear about it so much any more, except it does still try to sneak in, in more or less covert forms.

    I don't have children and have never wanted any - long before I had ME/CFS this has always been my choice - but my reasons have nothing to do with thinking that the world is a doomed and horrible place; my decision is a personal one based on what is best for me. Therefore, I accept full responsibility for my decision, and I would never in a million years assert that my wishes are the "correct" ones that everyone in society should have.

    Consider very carefully the ultimate outcome of trying to dictate or control the reproductive decisions of others. Giving information is one thing; doctors try to do that when people are considering having children (that's why there's such a thing as "genetic counseling," it's not called "genetic enforcement") but I don't even see that your information is particularly reliable, or on what basis you claim such expertise.
  7. Fejal

    Fejal *****

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    I said voluntary, not involuntary. You need to read more closely. If people want to have deformed babies then that's their right. Just don't give them incentives to do it. I'm not advocating genocide. Maybe there should be a box on people's taxes to support retarded childbearing. But somehow I doubt most people would want to do that.

    Also, thinking that 0 + 0 = 100, like insearchof's comment that two messed up people can breed out mistakes is only 1/4 right. That only occurs when you have a healthy copy and a flawed and then Mendel's rules apply. You're going to have three sick for every one healthy so the only way that works is if you kill the sick ones so they don't continue to reproduce, otherwise they keep diluting the pool. Most healthy people avoid obvious sick ones instinctively so it doesn't work. This is why predators are so valuable, they kill the defective offspring before they can reproduce and spread the bad genes. Perhaps we could test and abort the fetus in utero? It could be a more compassionate of the historical way that Grecian fathers used to leave deformed babies in pots to die. This created the very strong Spartan lineage.

  8. fla

    fla Senior Member

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    A facebook friend of mine posted a link to this blog today by a ME/CFS sufferer with two children with ME/CFS. A quick skimming of a few posts makes me happy with our decision. XMRV is everywhere, XMRV weak genes are relatively rare.

    If you want an impartial opinion, ask a few insurance companies for a 10 million dollar policy that your future child would get if they come down with ME/CFS. If it's cheap, you'll know the risk is small and you'll know your kids will be set for life if ME/CFS takes away their ability to support themselves. Anything can be insured. Higher risk equals higher price.
  9. Fejal

    Fejal *****

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    I read that blog. What a terrifying prospect, the thought that your kids could come down with it and have no future. More reason not to have them if you have this disease.

    By the way, you can probably forget about that life insurance policy. Insurers have been limiting disability for CFS patients to two years.
  10. Jemal

    Jemal Senior Member

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    Now I believe in XMRV, but at the moment there's little scientific basis for this statement I think. We don't know if XMRV is everywhere and if genes have anything to do with it. We don't even know for sure at the moment if XMRV causes disease. And if so, how it spreads.

    You almost make insurance companies sound as idealistic organisations. Personally, I wouldn't call them impartial. Nowadays they are commercial entities that want to sell products that look like they cover lots of risks, but the risks for the insurer in fact will be small (because of clever conditions for example). I know I wouldn't want to involve them as some kind of judge in big life decisions.
    Still glad one of those big American insurers supplies me with my monthly pay check, though :D

    Anyway, I hope that in the near future we will know a lot more about this whole ME/CFS & XMRV mess, so that we can all take more carefully considered decisions. At the moment I believe we just don't know enough and I advise everyone to apply common sense. Also remember that nothing in life is certain. Two healthy persons can get a disabled child or a previously healthy parent could suddenly fall ill. I used to worry about getting a child with some kind of illness or handicap... I never expected to fall ill myself.
  11. Fejal

    Fejal *****

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    I agree with this and the smartest thing to do is play it safe and assume the worst case scenario that the kids will be infected and that you'll not have enough energy to care for them. As the boy scouts say, hope for the best but assume the worst.
  12. Jemal

    Jemal Senior Member

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    Which could be fine if you have a supportive partner or family.
  13. Fejal

    Fejal *****

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    It is not fine to be an infected kid!
  14. insearchof

    insearchof Senior Member

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    I cannot comment on Mendels rules or your analysis on my comment.
    However, to say that healthy individuals instinctively select out the sick is not correct. If it were so, many of us would not be married or otherwises be in relationships

    The blog gives an isolated report. As previously stated, there has been no population studies on the transmissibility of this illness and even if there had been, the determinant would still be the health of the individuals immune system.The odd isolated report might create a terrifying prospect, only if and when it is not put into perspective, as this thread has done.
  15. insearchof

    insearchof Senior Member

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    Even with inherited genetic disorders, doctors can only guesstimate the probability of the risk that the child will be born with the condition. They cannot give guarantees either way. Children are born all the time who defy scientific odds.

    More over, there is no data to currently support your fears Fejal that parents with ME or XMRV will most definitely produce an infected or ill off spring.
  16. Jemal

    Jemal Senior Member

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    Amen to this. There's just not enough data and the data that is available is mostly anecdotal. We need a lot more research. If it's proven that people with ME/CFS pass it on to their children in 50% of cases, we would have another kind of discussion. At the moment I don't believe it's so contagious though. It's anecdotal evidence as well, but noone that I know has ME/CFS, not even my wife. We'll see how it pans out...
  17. Fejal

    Fejal *****

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    >However, to say that healthy individuals instinctively select out the sick is not correct. If it were so, many of us would not be married or otherwises be in relationships

    This is a known fact. Just read a book on social psychology. The sick are stuck as outcasts comingling with other outcasts. The only way I can see sick being married to well would be that they were married pre-sickness.

    >More over, there is no data to currently support your fears Fejal that parents with ME or XMRV will most definitely produce an infected or ill off spring.
    Lyme has been identified as a subset of the disease. NF-KB upregulated is known to occur. Four bacterial stealth pathogens, all transmissible cause this (lyme, bartonella, erlychia, anaplasma). You are wrong to prematurely dismiss the likelihood. Im not saying that everyone could transmit it but the likelihood is high for many, probably 50%.

    My guess now is that CFS patients consist of a combination of EBV only who are stuck in a rut of chronic inflammation and NF-KB disabled who are infected with stealth pathogens that are transmissible. History that points to stealth pathogens would be exposure to cat/dog/tick/fleas or blood. EBV is transmissible with intimate contact.
  18. insearchof

    insearchof Senior Member

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    "The only way I can see sick being married to well would be that they were married pre-sickness"

    However, your premise was based on the notion of an in built instinct to select healthy partners. Therefore, your original premise was wrong, because a healthy partner on your original theory should have been able to detect a flawed partner who might succumb to illness.

    As for the sick being social outcasts, have you ever visited a hospital ward during visiting hours?

    Whoever diagnosed Lyme as a subset of CFS needs to actually study up on the diagnostic criteria for CFS. It is impossible to have Lyme and CFS, as CFS is a diagnosis of exclusion. If you have lyme, you have Lyme. It stops right there. It is possible though to have Lyme but have been misdiagnosed with CFS. So I am afraid that Lyme is not a subset of this illness. Most patients with a diagnosis of CFS are tested for Lyme at some stage, if not before, then usually after.

    As for stealth pathogens, we have already discussed it. Can you please cite sources for your assertion that transmission of those pathogens is as high as 50%?

    Yout theory about EBV and stealth viruses, is interesting and worth looking at, but it is, as you rightly put it, a guess and a personal one at that. Unfortunately, it cannot be seriously considered in this matter, for that very reason.

    Also on the basis of your logic, no one should have children because arguably there could be ( and probably is) bugs and pathogens carried by prospective parents, that medical science currently has no or little knowledge of.

    Your approach Fejal, suggests that if anyone has the slightest imperfection they should be denied basic human rights. I find that intriguing coming from someone who is themselves disabled by illness.
  19. Fejal

    Fejal *****

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    >Yout theory about EBV and stealth viruses, is interesting and worth looking at, but it is, as you rightly put it, a guess and a personal one at that. Unfortunately, it cannot be seriously considered in this matter, for that very reason.

    You seem to be jumping to conclusions to summarily rule things out based on your own biases. Anyway, I said/meant stealth bacterial infections not viruses.

    >Also on the basis of your logic, no one should have children because arguably there could be ( and probably is) bugs and pathogens carried by prospective parents, that medical science currently has no or little knowledge of.

    Now you're making another red herring fallacy.

    I think I'm going to stop here unless the original poster replies.
  20. insearchof

    insearchof Senior Member

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    Stealth viruses or bacterias, it does not change my fundamental point, which was that what you put forward was a guess ( your words, not mine) . So I did not jump or need to make any conclusion. I simply picked up on what you said yourself Fejal.

    As for bias, I am. I have a bias for fact supported by reasonably robust science. We all have biases to a degree, and yours seem to be towards personal theories on EBV and stealth bacteria, eugenics, and a world without children. That's ok. I don't necessary find those biases attractive as alternatives, but I am always open to entertaining alternatives. live and let live.

    If my last point was a red herring, that would make your previous comments such, as it was simply an application of the logic your comments were exhibiting.
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