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ME in families

Discussion in 'General ME/CFS Discussion' started by pibee, Dec 12, 2017.

  1. pibee

    pibee Senior Member

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    Is this just my impression or it really is that ME has bigger gene/hereditary component than "other" autoimmune diseases?

    In my family we all have Hashimoto (mom,sister,myself and i'm quite certain my grandmom had too), as for ME, i have most pronounced, but based on all my moms descriptions of her fatigue - she has a very mild form of ME too (she never took 1 day off from work in 40 years of working so it really is mild) but she is brain foggy and once she is in house, she is very lazy to go even 200 meters by foot. i remember she was like this 20 yrs ago too when i was kid
    anyway, she def has ME. and, she has many bartonella symptoms so i think she has bart.

    my sister even mildest form but she also feels it (she has a bit of fibro too, and Sjogren antibodies so maybe could be not-ME fatigue)


    I had Lyme specific symptoms from very early, so there is possibility i have congenital Lyme and my sister has some specific symptoms, ... so maybe this is big trigger for my family's case ... but not sure what to believe anymore.

    ..when i look at other diseases like MS, ... there doesnt seem to be so many families as ME with more than 1 member having it?
     
    Last edited: Dec 12, 2017
  2. Hip

    Hip Senior Member

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    I posted the following elsewhere:


    One study that actually looked at the prevalence of ME/CFS in close relatives of ME/CFS patients found that the risk of developing ME/CFS was 2 to 3 times higher in these relatives, compared to the general population.

    To put that in context: the prevalence of ME/CFS in the general population is around 1 in 500. So if the risk is doubled in relatives, presumably the prevalence of ME/CFS in close relatives is around 1 in 250.


    The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.

    So that would equate to around 1 in 50 spouses also developing ME/CFS.
    So genetically unrelated spouses or partners of ME/CFS patients had 10 times the prevalence of ME/CFS.



    If we assume ME/CFS is caused by viral infection, perhaps in combination with local toxic factor such as mold in the home, it is clear that spouses or partners living in the same house are going to be exposed to the same factors. The viruses linked to ME/CFS are spread by saliva, and so will be very easily spread by kissing and close social contact.
     
  3. pibee

    pibee Senior Member

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    i am not sure about the stats for MS etc but i think this is not much higher chance (2-3x ) than for other AI diseases... which is good ... (its scary to think it's more genetic!)

    Although I do believe viral trigger is most common, not sure why would we assume it's CAUSED by viral infection. This is too far reaching statement imo

    edit: i missed the part on spouses, that info is WOW!

    I often times wonder if my dad had also ME/CFS (he died young from lung cancer) because he'd need that "quiet" time in bed, in dark room, but it overlaped w cancer i thnk, not sure how many years before 4th stage you can say it's undiagnosed cancer. He liked to walk a LOT, so if he had ME it was atypical ie only cognitive.
     
    Last edited: Dec 12, 2017
  4. Wishful

    Wishful Senior Member

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    Maybe partners share epigenetic triggers? They both get some minor virus, which causes epigenetic changes, which leads to cellular dysfunction triggered by a later immune activation? Just a thought.
     
    JeanneD likes this.
  5. Wonkmonk

    Wonkmonk Senior Member

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    This is very interesting. So either it may be that a virus or other microbe (or some rare variant of the virus) is the cause and spouses infect each other, or there may be environmental triggers to which spouses with similar living conditions and lifestyles are exposed in a similar way. Or a combination of both.

    Spouses usually live in the same house, eat the same food, often have similar lifestyles in terms of excercise, sunlight exposure etc.

    The same may be true for close relatives, but to a lower degree, so that would be consistent with the lower incidence among close relatives as compared to spouses.

    So maybe genetics isn't such an important factor after all.

    But I don't see a lot of "CFS couples" in the forum...
     
    andyguitar likes this.
  6. Wonkmonk

    Wonkmonk Senior Member

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    Btw, in case someone knows: Is there any confirmed case of new CFS infection after a blood transfusion?
     
  7. Hip

    Hip Senior Member

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    I can think of a few people on this forum who have at least one additional ME/CFS patient in their immediate family.

    Given the 10-fold increased prevalence of ME/CFS in spouses or partners, out of all the forum members who actually have a spouse or partner, you would expect 1 in 50 of these to have a spouse or partner who has ME/CFS.

    I am not sure how many people here do have partners, but let's assume a figure of say 50% (although that may be a little high given the difficulty in dating with ME/CFS). So then you would expect 1 in every 100 members of this forum to have a spouse or partner with ME/CFS.
     
    Last edited: Dec 12, 2017
  8. Wishful

    Wishful Senior Member

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    Genetics might not be a major factor, but epigenetics (changes to how genes are expressed in the individual) might be. Food, sunlight exposure, etc, have epigenetic effects. This seems like a very reasonable explanation for ME, and would explain the prevalence in people who have lots of contact with ME patients.
     
  9. Hip

    Hip Senior Member

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    Epigenetic changes are just part of how our body responds to environmental factors. So by saying epigenetics may be involved, you are not saying anything more than the statement that environmental factors may be at play.
     
    Last edited: Dec 12, 2017
  10. 5150

    5150 Senior Member

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    [QUOTE="Hip, post: 940888


    The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.



    Another name for this phenomenon is " Contagious." . . . just what I heard...[/QUOTE]
     
  11. dreampop

    dreampop Senior Member

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    [/QUOTE]

    Actually the correct word, I think, is unvalidated.
     
  12. unto

    unto Senior Member

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    in the forum the users are too exposed, have children who read on the forum, have friends who know their nik name, can not say that they have a sick spouse as themselves, it would be like admitting to having an infectious disease and to have it passed on to family members ........... and already that they are marginalized from the social life because of the rhythms that dictates the ME they fear to be more for the infectiousness.
    they could also lose the affection of their spouse and resent their children.....

    certainly that there are sick people due to transfusions
     
  13. notmyself

    notmyself Senior Member

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    in my family there is defiantelly no predisposition to ME..everyone is extremelly active and healthy, my 89 grandmother cuts woods for fire everyday ans she do something all the time..i was the same ,active and healthy, the problem with this is that is even harder for them to understand what i am going trough..
     
    andyguitar likes this.
  14. andyguitar

    andyguitar Senior Member

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    Family members, if living together, will be exposed to the same environmental health hazards. They will also have other things in common and may use the same methods to treat any illness they have. Diet may also be similar. So there does'nt have to be a genetic connection.
     
  15. Wishful

    Wishful Senior Member

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    I thought about what I had written afterwards, and wondered if 'epigenetics' really had much meaning. I suppose it does distinguish it from toxin build-up, tissue damage, and other such things, and it does offer specific options for treatment, so it might have some value as a word.
     
  16. Hip

    Hip Senior Member

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    @Wishful
    Epigenetic changes arising from environmental factors can sometimes be passed from one generation to the next; but generally speaking, the epigenetic status of an individual is determined by the environmental factors that individual has personally experienced.
     

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