Do your children have ME/CFS?

[coxy]

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!!

 

[klutzo]

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

 

[Hope123]

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

 

[Overstressed]

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.

 

[coxy]

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.

 

[Lesley]

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.

 

[Overstressed]

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.

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.

 

[belladonna]

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.

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.

 

[taniaaust1]

CFS versus FMS,

I
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

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

 

[coxy]

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.

 

[3CFIDS@ourhouse]

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.

 

[Ocean]

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.

 

[Juli]

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.

 

[*GG*]

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.

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!

 

[WXMan]

Interesting poll and thread. Perhaps there is a genetic link as well. Interesting!

 

[SOC]

Interesting poll and thread. Perhaps there is a genetic link as well. Interesting!

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.

 

[Yocheved]

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.

 

[Tristen]

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.

 

[Gingergrrl]

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.

 

[Juzey]

I'm a little surprised that the poll doesn't include options for people whose parents also have CFS.
My mother had CFS when she was in her 20s (I think) but has now recovered.