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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. fla

    fla Senior Member

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    A quick google search found another "isolated" case. When we researched this ourselves we also found numerous "isolated" cases but not these particular ones. Statistics are not about proof they are about knowing the risks. If a biological warfare lab opened in your neighborhood and the rates of isolated cases of infected kids were the same as the rates of ME/CFS parents having sick children would you object to the lab in a residential area?
  2. Jemal

    Jemal Senior Member

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    It's great that you have done research on this issue. Still, it's anecdotal evidence and it's not worth much. There could be thousands of healthy children with parents that don't feel the need to write about it on blogs or other places on the internet.

    You can get the wrong ideas sometimes by just looking at the internet. Take forums for certain products for example: most of the forums are filled with people complaining about the product and when visiting said forum you would think the product is faulty. When you look at the statistics however, only 5% of all customers might have complaints, but that 5% makes up 90% of the userbase of the forum. The 95% of customers that have no complaints are enjoying their product and not posting on that forum, because there is no need. That's the problem with anecdotal evidence, the negative tends to surface. I am sure this forum attracts more people with severe ME/CFS than people with mild ME/CFS. Because the people with mild ME/CFS are living their lives. This could also give the impression that people with ME/CFS are always badly affected, while in fact there's a subset of patients that can still function (though with problems).

    Of course these "isolated" cases could be the tip of the iceberg. It could also be that health issues only arise decades later and it will be hard to link it to a virus as XMRV. For now I believe that if ME/CFS was highly contagious or if all children of affected parents had health issues, this disease would have been noticed a lot more.

    We need good, objective research to crack this disease.
  3. Fejal

    Fejal *****

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    Isolated cases are called "case studies" and these ARE relevant. It is a fact that CFS occurs in clusters, indicating that it is infectious.

  4. dannybex

    dannybex Senior Member

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    Just because some CFS occurs in clusters, that doesn't necessarily mean that it is soley infectious. Many factors can also contribute to becoming sick, i.e., hidden black mold, solvent exposure, pesticides, food intolerance (de Melier), etc..

    I'd be curious to know if anyone can find statistics on cluster outbreaks vs 'sporadic' cases. My guess is that there are more cases in the latter group.

    ???
  5. fla

    fla Senior Member

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    Some people may not like Dr Myhill or her conclusions but observations from a doctor who has observed patterns over several thousand ME/CFS patients tells us something about risks: "CFS runs strongly in families, usually down the female line. This is because all our mitochondria are inherited from our mothers. I see many mother-daughter, motherson combinations both with CFS but rarely father-daughter, father-son combinations."
  6. Jemal

    Jemal Senior Member

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    That case study you dug up, says nothing about the chances of passing on a virus or the illness itself to your children during pregnancy for example. For all we know, children are falling ill because they are drinking contaminated milk in some areas or because of vaccinations. Maybe ticks are spreading a virus like XMRV.

    As soon as there's a study that proves ME/CFS is caused by a viral or other agent and that there's a high chance to pass this agent on to your offspring, and there's a high chance they will get ill as well, then we have a different discussion. For now no such study exists, as far as I know of. The WPI has done some research, but most of it was done on small groups of people and the research is unpublished.

    Personally, I wouldn't mind finding out an agent like XMRV is the cause of ME/CFS, even if it meant I have now passed it on to other people (I didn't know then and still don't know now if I am infectious, so my conscience is clear). Because it would open up treatment options. Unfortunately it doesn't seem to be all that "simple".

    Again, people should apply common sense. If you believe you can take care of the children both financially and physically, at the moment I wouldn't postpone trying to get pregnant. For me it's common sense as well that a healthy couple that's in a very bad financial state, won't try to get pregnant. Unfortunately for me, common sense differs in people :D
  7. markmc20001

    markmc20001 Guest

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    Think I figured out a good way to figure out if you should have a kid or not CAcfs.

    You can use a coin toss to decide. One tool for figuring out what you basic subconscious wants.

    So goes like this. Assign having a baby to one side, and not to have a baby on the other. Flip the coin and if you are emotionally happy with the coin toss results, you probably have the answer your sub-conconcious wants.

    all the best!
    Mark
  8. Graham

    Graham Senior Moment

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    This is dredging up from the dark recesses of my mind, but if you can find the original report by Jane Colby and Betty Dowsett in the late 80s, early 90s where they looked at the distribution of ME in schools in the UK, they came to the conclusion that it followed an infectious disease pattern. I haven't looked at the study for many many years, so I'm not sure about the details, but if you could find it, it was thorough enough to give you patterns of cluster versus sporadic outbreaks amongs children in the UK.

    Again, in the dark recesses, I remember reading a bit somewhere that claimed that sons-in-law of people with ME had an increased chance of getting it. Does anyone know anything about that claim? I have not seen any evidence about that at all.

    ME does run in my family, but the sequence is odd. My son went down with it following a throat infection in 1989 when he was 8: I went down with it in 1999 after a sinus operation on an infected sinus.

    At the moment, I tend to believe that Canadian definition ME is infectious, but that there are other, equally evil forms of ME/CFS which may not fit that pattern, which is why the whole thing is so confusing.

    As an ex-teacher though, I have noticed that the incidence of children on the autistic spectrum seems to be greater than usual with parents who have ME. The XMRV study is the only one that may have a link there, and of course, I may be utterly wrong. Has anyone else noticed something similar?
  9. dannybex

    dannybex Senior Member

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    Quoting the CCC definition...

    Hi Graham,

    Rich Van Konynenburg's partial methylation cycle block hypothesis I believe is based in part on his premise that ME/CFS is part of the autism spectrum, after Jill James found similar 'blocks' in children with autism.

    Regarding the Canadian definition, here's a quote from the paper:

    "Before acquiring the illness most patients were healthy, leading full and active lifestyles. ME/CFS most frequently follows an acute prodromal infection, varying from upper respiratory infections, bronchitis or sinusitis, or gastroenteritis, or an acute "flu-like" illness.

    Other prodromal events that may stress the neuroimmunoendocrine regulatory system include immunization, anesthetics, and exposure to environmental pollutants (28), chemicals, and heavy metals (29).

    Physical trauma such as a motor vehicle accident, a fall, or surgery may also trigger ME/CFS. In rare occasions, ME/CFS has developed following a blood transfusion. Within days or weeks of the initiating event, patients show a progressive decline in health and develop a cascade of symptoms.

    The subset of patients that have a gradual onset are less likely to show discrete triggering events."

    http://myalgic-encephalomyelitis.com/ME-CFS-canada-protocol.html

    This was written in 2003, before XMRV, but after Defrietas. Certainly a retrovirus could explain why it may run in some families, and also explain outbreaks, but so could the environmental triggers listed above. At least they're another possibility to consider...
  10. Fejal

    Fejal *****

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    Did Konynenburg consider that CFS patients might just need a lot of methionine, an essential amino acid, due to their fight with the disease? This is the most simple explanation for the low serum level, increased need rather than a legitimate metabolic defect. I have a problem thinking that cfs patients have this "methylation block" which I'm sure someone wants to sell supplements to treat. I find that I eat twice as regularly as I needed to before and I often have a craving for vegetable protein that contains methionine.
  11. Mark

    Mark Acting CEO

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    Fejal, no offence intended, but the ideas about the practical and ethical implications of evolution and 'survival of the fittest', that you've absorbed and passed on here, are total rubbish, as well as being offensive and outdated, and here are a few reasons why...

    - Biodiversity is the important factor for the long-term survival prospects of a species as a whole. Narrow focus risks extinction in the face of a changed environment. There's just no predicting in advance what will be necessary for survival. It's perfectly feasible that the next plague could wipe out everybody except those who happen to have the means to respond to it, and those who seem to be 'the fittest' right now might be completely exposed to some new threat. Your arguments are based on the assumption that the future environment will present the same kind of challenges as the current and past environment, and the assumption that there is one single and unchanging measure of evolutionary fitness - both assumptions are clearly false.

    - You focus exclusively on the 'ugly', 'retarded' and physically sick as if physical health were the sole criteria for evolutionary success or failure. Yet it is clear that everything we are is a product of evolutionary processes - and that includes aspects of us like intelligence, imagination, compassion, morality, social skills, etc etc etc. All of the things that we are are the product of evolutionary processes, and were shaped by them - and so to think about evolution purely in terms of physical beauty will lead you down hopeless blind alleys. Professor Stephen Hawking is still worth having around, don't you think? He makes a pretty good contribution to society despite his immense physical challenges, wouldn't you say?

    - It is now suspected that viruses and retroviruses in particular may be a crucial factor that drives evolution- and not just by wiping out those that can't cope with them (the simplistic old theory) but by actually changing and integrating with the organisms that they infect.This idea may seem Lamarckian to you, but the discovery of retroviral RNA was a heretical but true revolution.The simplistic conception of Darwinism has tended to focus on factors in the macro environment, but factors in the micro environment are of course at least as important, and have tended to be underestimated just because we can't see them with our eyes. Retroviruses in particular demonstrate that today's viruses will in the future become integrated into our genome and will become part of us. Biologically, it may well be that everything we are made up of originally started out as a challenge to an organism that invaded it and, eventually, became integrated into the ecosystem of the organism.

    - Following on from the previous point: consider the probability that any of the unknown infection(s) that are believed by some to cause our illness (and it's of course completely unproven and widely disputed that infection is the underlying factor in ME/CFS) are of a type that is now out in the wild, spreading and mutating, and impossible to eradicate - a fact of human life that everyone may have to deal with at some point in the future. Those who have not yet got sick from such viruses may or may not have been exposed to them. They may or may not have some inherent strength that has protected them so far - perhaps they just haven't encountered the wrong combination of very specific circumstances to get sick yet. If this is the case, then far from being evolutionarily vulnerable, in 2 or 3 generations' time our descendants might actually have a head start! Their bodies may be better adapted to coping with the types of evolutionary challenges that are growing in importance, whereas those who have no history of such adaptation could get wiped out by a new superbug to which they have no learned resistance. Evolution happens over generations: it's our descendants' fitness to our descendants' environment that will determine their suvival or otherwise.

    - We may be infected, we may be sick, but we have not died from that. Until we do die or become unable to reproduce, evolution has not finished with us yet. Our ability to reproduce would seem to give us some form of licence to do so. Only if and when the world decides to do away with us will that licence be withdrawn - so it's logical that we should fight against grotesque and half-baked ideas about sterilisation if we value life at all.

    - Your assertions that nobody cares about the sick and ugly and disabled are palpably false - that may be true in your immediate environment but it certainly isn't in mine, so it is not a universal truth. Similarly your assumption that happiness in life depends only on material success, wealth, physical fitness etc. is proved false by experience: that may be true for you, so far, but it isn't at all true for everyone. If this were true, then why would so many celebrities suffer from alcoholism, depression, and drug dependence, and lead empty, lonely and unsatisfying lives? And why are so many disabled people brimming with optimism and happiness? Perhaps you just haven't hung around the right people long enough and in the right way to find this out, but I have found throughout my life that the greatest sources of happiness lie not in superficial material success, but in the warmth and love and sharing of compassionate human beings. And I've found that the deepest experience of those things is to be found amongst those communities facing the greatest challenges, in the deepest poverty and suffering, where survival is dependent on sharing - on the social aspects of our species. Perhaps when the sort of shit you are predicting for the future hits the fan, the people at the greatest risk will be those who are outside the wider group of humanity - those who are heartless and isolated and despised and who may be rejected by the communities of survival. The narrative that one needs to be rich and beautiful in order to be happy is pushed on us through the mass media all day long - in an attempt to sell us their wares - but it is a lie and an illusion, and it conceals the best things in life.

    - Ultimately the question seems to boil down to: "Is a sick or disabled life worth living?". Is there any value in such a life at all? When we moan and groan that our lives are unbearable and are not worth living, we likely believe it at the time but our continued existence proves us wrong. The very fact that we continue to exist, even if some of us may sometimes think or talk about suicide, proves that we have decided that, on balance, it's worth sticking around. So we've answered our own question: despite all the suffering, despite all the feelings of hopelessness, on balance we continue to decide that it is better than nothing, and there is some hope. If someone makes that decision for themselves - and even so strongly that they are prepared to live on and bring up a child - then they take on the responsibiity to make that decision to live on behalf of their offspring - just as anybody must when they decide to bring a life into the world and to care for it as best they can. Such decisions are therefore by definition the individual's to make, and evolutionary theory doesn't give anybody any right to take such decisions for others as if they could calculate and know what the future may hold.

    - Medical advances have rendered previously incurable and debilitating conditions treatable. Isn't that the whole point of medicine and science? With the accelerating pace of medical and scientific advances, there's every reason to hope that the biological realities that define our lives today will be changed completely within the next century. Stem cell research holds the prospect of "turning back the biological clock" and restoring our bodies to their prime. Research aimed at achieving "biological immortality" is a growing and serious science. If the problems of human biology can be conquered in the future with the help of ever-more-powerful supercomputing (did you read about The Singularity as I suggested?) then the environment in which we evolve may be very different in the future - and that may be a step-change as big as the one that made intelligence the most important factor for survival rather than brute strength.

    The way you look at these questions is based on a crude and unquestioning model of the implications of evolutionary theory, and it seems to me it is probably also based on your own negative feelings about your personal situation. Your fatalistic assessment of the prognosis for ME/CFS sufferers and for the future of the planet is a guess about the future, and the determining factor in that guess is your own emotional state: you feel a sense of despair and you struggle to find hope. But Life and Hope are inextricably linked; perhaps they are even identical, because a continued decision to live implies the absence of total hopelessness, and the existence of hope requires life. So if to live is to hope, then the optimistic decision of a couple to bring a life into the world is by definition a justification for that decision: they have sufficient hope, sufficient optimism, to make the decision, and sufficient life in them to give the child what it needs to live and to have the opportunity to hope itself.

    I am very sorry that you feel such hopelessness and despair. Intractable and debilitating pain can rob us of the joy of living, and chronic unrecognised pain, combined with neglect from authority, wears down our reserves of hope over the years. Nobody here can fail to understand that. But this is Phoenix Rising: we are all about hope here: we believe that greater knowledge and understanding can and will transform our lives, and we believe that by sharing information and experiences here, and by hoping together that things can be different, and working together to make it so, we can help to bring about that individual and collective transformation more quickly.

    You're still here in this community - and on this very thread - because we have compassion for your pain and suffering, and because we all want to help share that hope with you. And presumably you're still here because you are still searching desperately for that hope, and some part of you hopes you can find it here. I really hope you can, because beliefs like those you've expressed here are both a product of hopelessness and a cause of it, and as such they are dangerous infections indeed.
    helen1 likes this.
  12. urbantravels

    urbantravels disjecta membra

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    Very well put, Mark.
  13. Tulip

    Tulip Guest

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  14. leaves

    leaves Senior Member

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    Well said
    -----
  15. fla

    fla Senior Member

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    Suffering as I am, I can barely skim through such a long post.
    Suffering as I am, I could never write such a long post.
    Suffering as I am, if my parents had ME/CFS, I would go back in time to tell them to adopt someone who wouldn't need to be suffering as I am.
  16. insearchof

    insearchof Senior Member

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    Dr Myhill made an observation but observations cannot be upheld to scrutiny. Bell made a similar observation in the form of a survey of 104 patients, 44 of which were children. 29 of those children had at least one family member with a *similar* syndrome, BUT it was not the same. So sometimes, observations are not always reliable and what looks to be X by way of general observation can turn out to be something completely different.

    The abstract cited by Fejal states a combination of factors is involved, requiring that all ducks to be in a row, so to speak, in order to place a high probability on the outcome of acquiring the illness. Nothing is therefore certain or predetermined, only death as they say.

    As for clusters and sporadic cases, CFS as defined is not recognized as being infectious and ocurring in clusters. ME, however is. However, CAcfs has CFS.

    CFS as a syndrome acknowledges that the cause of the illness is unknown. So there is little point holding up infective agents as it's cause and trying to viify people for having children because they will infect their offspring. There is no probative scientific evidence in support of this position, at least not just yet.

    Ps excellent post Mark.TY
  17. insearchof

    insearchof Senior Member

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    Hi Fla

    If you were to write out a list of your favorite things, experiences and people, including the love you have for family and friends...are you saying that not one of those things, people or experiences ....including your parents.has so little value that you would have fore gone the opportunity to receive a physical carnation, albeit it a limited one?

    Even if you were able to do this, adoption of a child does not mean that they might not also fall I'll, be it with ME CFS or some other illness. Life does not come with any guarantees irrespective of how it arrives.
  18. Fejal

    Fejal *****

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    Re: Mark

    The point of evolution is to select the best adapted traits and weed out the rest. Ironically, medicine opposes evolution by interfering with the process. It allows clearly unfit, disadvantaged beings who would otherwise be totally incapable of survival to live in a population with those who do. As I said before, personal familial and long term bonds aside, people instinctively shun the sick-and for good reason as this protects them from genetic and communicable diseases. That is why you're never going to see a pin up catalog of obese, disabled individuals being voted most attractive. Sure society may pity them as an example of tolerance but the reality is that the disadvantaged are shunned. I see many people need to come to terms with this fact.

    Does CFS have any redeeming values? Absolutely not. It is a deadly trait that kills individuals who lack insurance or societal support. So don't try to say this mutation has any value whatsoever. We aren't talking about sickle cell anemia being protective against malaria. There is no reason to even talk about CFS in the same discussion.

    If you remove death and allow everyone to reproduce then you stop evolution. This is not fostering biodiversity but blocking evolution and we see it in the decreasing fitness of the human race over time. We are getting fatter, dumber, etc. Only through selection pressure can we improve and this means that the less fits must die-a cruel but necessary fact.

    Does Stephen Hawkings intellect justify his survival? It is an example of how evolution favors traits rather than refutation of it. Hawkings superior intelligence isnt the random chance mutation of a virus but rather the result of careful selection as most are. His father headed a college parasitology department so it was likely that he would be intelligent. In fact, the odds were against him being average and in our technologically advanced civilization where this is valued he has done well for himself. But referring back to FLAs comment that life for the disadvantaged isnt easy, Hawkings has no children and his intelligence wont be continued in the gene pool.

    Will medicine eventually cure CFS or at least come up with decent treatments? Probably not given that public funding is poor. Most of the the discoveries come from public funding. Look at diabetes, has that been cured? No. It's a genetic tendency so the only way to fix that is through better stock-either through death and evolution or through gene therapy for individuals.

    Is longevity research a good idea? Probably not as this would lead to overpopulation and dilution with even worse genes.

    Death serves a purpose. Don't fear it. Whether you're 99 or 1, everyone has to meet it eventually. In days past it was common for parents to have many children because many would die and the survivors were needed as cheap labor. Sure parents would grieve but death was accepted as a part of life and the deaths of the feeble ensured that the species would get stronger. We need to accept that for the good of our species death is necessary, not run in terror from it and hope for immortality. Were it not for the deaths of our ancestors we would not even be here. How many poor, suffering animals did you consume today for your food? Our food raising practices are like medicine in that we do nothing to help the species we eat. At least natural predators make their prey fitter. We enslave our prey and make them into food factories-often promoting disease in ourselves in the process.

    We owe the grim reaper a debt of gratitude. My point is that regardless of whether people choose to live with CFS or get euthansia at some point, choosing to not have kids is nothing to be ashamed of or a personal failure.
  19. Waverunner

    Waverunner Senior Member

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    Fejal: Your comment may sound crude to some people but I agree. A few centuries ago people with CFS and other diseases would have died very early and were prevented from spreading their genes.Today all kind of chronic illnesses seem to be on the rise and seem to be passed on. Many people suffer but there is no cure. These people are often kept as pets and allow healthier people to silence their conscience by showing commitment 1-2 times a year. I guess there is nothing like a fair life. We are still part of evolution and evolution is cruel. The strongest with the best genes wins. What I find really funny is the fact that in 100 years or maybe earlier life will be a lot fairer. I'm quite sure that we will be able to cure most diseases by then. Science and technology improve day by day but as it seems some of us had the bad luck to get this illness now. It's like someone had pneumonia before antibiotics were developed. While being deadly then it can be cured easily today.
  20. fla

    fla Senior Member

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    There is strong evidence of a genetic predisposition to ME/CFS making some more vulnerable. To ignore that and hang on to the fact that it's not yet scientifically proven, mostly due to lack of funding, is not responsible especially when a child dies every five seconds of hunger. In their case the risk of future ME/CFS would be an improvement over certain death now.

    insearchof: My parents do not have ME/CFS. If they did and had access to the information available today, I absolutely would tell them to adopt. My genes are no better than the ones of the child who just starved as I typed this sentence.

    This may be a support group but if only one view is desired the thread should be renamed: "My reproductive instincts tell me to have a kid and I feel guilty of the risks I'm exposing my future offspring to. Please tell me things that will make me ignore that risk." Why should the parental instinct of protecting offspring from risk only kick in after the child shows up?
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