1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

Do your children have ME/CFS?

Discussion in 'Lifestyle Management' started by _Kim_, Jan 8, 2010.

?

Do Your Children Have ME/CFS?

  1. I have 1 child with ME/CFS

    25 vote(s)
    42.4%
  2. I have more than one child with ME/CFS

    6 vote(s)
    10.2%
  3. I have other children that do not have ME/CFS

    9 vote(s)
    15.3%
  4. None of my children have ME/CFS

    26 vote(s)
    44.1%
  5. I, the parent, do not have ME/CFS

    2 vote(s)
    3.4%
  6. I, the parent, was the first member of the family to have ME/CFS symptoms

    24 vote(s)
    40.7%
  7. I, the parent, became ill AFTER my children

    4 vote(s)
    6.8%
  8. One of my children showed ME/CFS symptoms first

    1 vote(s)
    1.7%
  9. We all became ill at the same time

    2 vote(s)
    3.4%
Multiple votes are allowed.
  1. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    i've been studying this poll, and it seems well over 50% of the respondents have at least 1 child with me/cfs as well as themselves. There are 3 of us who got me/cfs after our child/children, this causes me the most confusion. i had glandular fever when i was 15yrs, a well known trigger, yet didn't become ill until i was 40yrs old. If XMRV was in me when i was born, passed to me from my mother the way i'm presuming i passed it to my children, wouldn't i of become ill much younger?

    I don't know for sure of course, but i can only get my head round the XMRV theory if it was given to me sexually, my ex husband had some sort of fatigue syndrome when he was 17/18yrs (well before i knew him), although he has always held down a very challenging job, he did fall asleep at the wheel twice and has always suffered with extreme tiredness. It makes sense that he passed on XMRV to me pre children, i then was carrying it and passed it on before they were born. It then took 2 of the children 8yrs each for it to be triggered via what seemed like ordinary viruses. 1 daughter is healthy(presumably a carrier), and our 5 nearly 6yr old is definately showing more and more me/cfs signs every week, i'm now keeping a log, we are extremely worried! our family situation is so confusing, i just wish someone could unravel all of this & let us know what an earth is going on!!
  2. klutzo

    klutzo Senior Member

    Messages:
    543
    Likes:
    10
    Florida
    CFS versus FMS,

    I don't have any kids, except furry ones, but I thought this might interest some of you.

    I ran a 3-city support group for ten years and I noticed a big difference between the members diagnosed with FMS versus the ones diagnosed with CFS, besides some obvious differences in the major symptoms they complained about.

    There were many FMS members with family members who also had it, but 100% of them were blood relatives. Only the CFSers had non-blood relations who had the illness.

    I think this has to be significant. Up until I ran that group, I had been leaning towards thinking the two illnesses were the same thing.

    Then I read Osler's Web, and I believe that was where I read that Dr. Bell had found in his patient group, that within 10 years of onset in one person, 2/3 of close friends and relatives of a CFS patient would show signs of exposure in their blood (Not sure what the signs were) or be outright suffering from the illness. This matches the London hospital outbreak of 1953, when 2/3 of the staff got CFS.

    FMS research, on the other hand, seems to show an autosomal dominant inheritance through the matrilineal line, ie. mother to daughter(s).

    klutzo
  3. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    531
    Doesn't relate to me personally but FYI, Dr. Donnica Moore's son has CFS and so does her husband. She doesn't have it as far as I know.

    Of interest:

    Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients
    Journal: Journal of Chronic Fatigue Syndrome, Volume: 13 Issue: 1,
    Page Range: 3-13

    Authors and affiliations:
    Rosemary A. Underhill MB, BS, MRCOG, FRCSE, Consultant, New Jersey
    CFS Association, Upper Saddle River, NJ, 07458, petro8888@aol.com
    Ruth L. O'Gorman, Clinical Physicist, Department of Neuroimaging,
    King's College Hospital, London, UK, spimrog@iop.kcl.ac.uk

    The prevalence of CFS (Chronic Fatigue Syndrome) and chronic fatigue
    were investigated in family members of CFS patients using a
    questionnaire-based study.
    Significant differences were seen between the prevalence of CFS in
    all groups of family members relative to the published community
    prevalence of 0.422%, (spouses/partners: 3.2%, p < 0.001; offspring:
    5.1%, p < .001; parents and siblings: 1.1%, p < 0.02; second and
    third degree blood relatives 0.8%, p < 0.02.)
    The prevalence of CFS was higher in genetically unrelated household
    contacts and in nonresident genetic relatives than in the community,
    indicating that both household contact and genetic relationship are
    risk factors for CFS.


    Keywords: Chronic fatigue syndrome and epidemiology, family prevalence,
    infectious agent, genetic susceptibility
    [This article is currently listed as being in a prepublication status.
    After it is published, the full text will be available for a fee at
    https://www.haworthpress.com/store/ArticleAbstract.asp?
    sid=WBWK0424UUGB8G46VS4SC18B9RCD9D8B&ID=84783
  4. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi,

    I have a question for all the women here with one or more children: have your kids all being breastfed ? It is interesting to know whether the ones that did not, have healthy children ? This question applies to the ones that were ill before getting children...

    Thanxs,
    OS.
  5. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    i breast fed my 4 children for a short time. i became ill after my 2 children but if XMRV does pan out i don't see why it's only relavant if the parent was ill before the children, i may not have had the other trigger/triggers until a later date.
  6. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    I breastfed my daughter for a year. I began to have health problems after the pregnancy (hypothyroidism, hormonal imbalance, probably POTS), but didn't have CFS until 7 years later following surgery. My daughter became ill at the beginning of puberty.

    I agree with Coxy that being ill before pregnancy may not matter. I could have had XMRV before and passed it to my daughter, but we didn't become ill until a later triggering event.
  7. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    That's fully correct, I had better stated: women who did not breastfed their children, and still have children with CFS. Then another route might be involved.

    OS.
  8. belladonna

    belladonna

    Messages:
    23
    Likes:
    1
    D/FW TX
    I have 3 daughters, ages 10, 8, 2.
    Each was breastfed for 2+ years.
    So far, I'm the only one with CFS/Fibro/MCS/IBS/ETC.
    The kids and the hubby and all known extended family are healthy as horses for the most part.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,742
    Likes:
    4,613
    Sth Australia
    ohh that is interesting and that time period may also fit in my case. There was a girl i used to horse ride with when i was a child.. 10-11 years later we both got CFS (I didnt find out that it had happened to her too.. till many years after we'd both had it). Could this illness have a 10 year incubation period???? Maybe we both were exposed to the same person when young?

    but in my case too CFS as well as FM runs in my family (on my fathers side of family).. so i personally believe there is a genetic susceptability. oh or maybe i was the one to give it to other family members?? As i was the first one who got sick.. the others MANY years after me.

    Im interested to hear if there is anyone else here which fits like 10 year pattern from a possible exposure to then the symptoms happening
  10. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    Glad to see this thread is still going strong! I actually asked for this thread to be started but didn't have the brain to know how to do it, so thankyou for whoever helped me, sorry memory is non existent!
    I've always wondered about the incubation period. 2 out of 4 of our children have ME, both got it at 8.5yrs almost to the day, i was told it was coincidence by my GP but who knows. Both were breast fed for a short time (a matter of weeks). I got it after my first daughter had been ill for approx 4.5yrs, but my symptoms started about the same time our 3rd born son got it, but it took about a year later when i got the flu that mine went into full blown ME. My 2nd born child is still going strong thankfully, she's 14yrs now, and our 4th born son age 6yrs has had his scares but is still well but gets very tired and struggles with his school work which has been a big worry over the past year.

    Isn't it worrying how high the percentage is with children with ME aswell as the mother though!!

    Hopefully we can keep new people adding to this questionairre and then send it to Judy at the WPI, i'm sure this has to be very helpful statistics to work with.
  11. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

    Messages:
    124
    Likes:
    10
    Southeast US
    I just found this thread. I got sick 10 years ago, my husband 8 years ago, and our daughter, who is adopted, 7 years ago. We found out 6 years ago that our home had such a high level of a now-banned pesticide that it was uninhabitable and had to be destroyed along with everything in it, because everything had absorbed the poison. We are all also chemically sensitive now. I was diagnosed with CFS before we found out about the house, but after the discovery, we assumed that our illness was just damage from the poison, which is neurotoxic and affects the endocrine and immune systems. But now, with the XMRV/GRV news, we're wondering if the pesticide poisoning was only a trigger for the onset of CFS. We're waiting for my VIP Dx test to see.
  12. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    I don't have children unfortunately. But my mother has fibromyalgia. I feel certain there is a connection between her having fibro and my having CFS.
  13. Juli

    Juli

    Messages:
    1
    Likes:
    0
    Hi, I got CFIDS first, then gave it to my mom. I have a daughter that has CFIDS but it's not as bad as mine or my mom's. I have an uncle and cousin that has it. I haven't seen them in years but my uncle was diagnosed with EBV but has all the symptoms of CFIDS. I have never been to a CFS doctor but my mom and I know we have it, we have a book about it and we have ALL the symptoms, I never hear that often about people having a sore throat. My uncle and I have had a sore throat for about 25 years. This fatique and brain fog are the WORST. If I eat sugar my heart does weird things and I feel much worse. The heat kills me, heart pounds feels like i'm going to pass out. Smells and light and sounds are very irritating. Has anyone ever taken Ribavirin for CFIDS? I'm thinking about taking 1000 mg. for 6 months. Does anyone here have Hepatitis C also?. I have that too. I'm going on a trial with 2 inhibitors with Ribavirin. Has anyone done a trial for Hepatitis C before? sorry for all the questions, I've never been on a CFIDS site before. Any help would be really appreiciated.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,920
    Likes:
    784
    Concord, NH
    Just wanted to mention that if you don't get many/good replies. Start a new thread with your question(s) as a title.

    GG

    PS Welcome to the forum!
  15. WXMan

    WXMan

    Messages:
    11
    Likes:
    4
    Cincinnati, Ohio USA
    Interesting poll and thread. Perhaps there is a genetic link as well. Interesting!
  16. SOC

    SOC Moderator and Senior Member

    Messages:
    5,220
    Likes:
    6,109
    USA
    There is definitely speculation that, in some cases anyway, there could be a genetic component -- probably an abnormality in the immune system. Hopefully we'll get more research done in that area soon.
  17. Yocheved

    Yocheved Spoonless In Seattle

    Messages:
    29
    Likes:
    12
    Seattle, WA, USA
    This is something that has been on my mind a lot lately. My mom and sister both have Fibromyalgia (mom passed away this summer from Decrum's Disease.) I always knew I had fibro, but didn't think much of it, but I know that my family has some very messed up genes.

    When my daughter was 2, we both came down with EBV at the same time. She bounced back after a week of being ill, and I never recovered. I've been thinking about the differences between us, and why she wasn't more seriously affected.

    1. She's adopted, so she may have stronger genes than I do.
    2. She's never had HHV6 - Roseola. I had it when I was 3, and it caused me severe hearing loss.
    3. She's always had an amazing immune system, and is rarely sick for more than two days in a row. It takes me three weeks to get over a simple cold, which usually turns into a sinus infection.
    4. I have HSV-1, and she has HSV-2 (oral cold sores only).

    I thank G-d every day that she came through EBV with flying colors. She is often my primary carer when my husband is out of town, and is such an amazing kid, I can't even tell you. :love:
  18. Tristen

    Tristen Senior Member

    Messages:
    612
    Likes:
    421
    Northern Ca. USA
    This has been one of my greatest fears, but none of my offsping have developed me/cfs. Thank God. But other autoimmune diseases such as RA are very prevalent in my immediate family. My mom and 3 sisters all have severe RA. Offspring......nada.

    When I was more connected with the me/cfs community a few years back there were a few very well organized studies looking at familial diseases for people with me/cfs. Not sure of those final outcomes, but I do believe the percentage of autoimmune and/or neuroimmune diseases in me/cfs families is higher than the controls.
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    948
    Likes:
    1,305
    USA
    I know this is an old thread but I wanted to add my response. I do not have biological children but live with my husband and step-daughter and thank God they are both healthy and do not have CFS.
    ggingues likes this.

See more popular forum discussions.

Share This Page