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CFS heredity links?

By July 24, 2011 - 12:24am

Hi all,

This is aimed particularly at the ladies. I'm just wondering of the CFS ladies with children, how many of you had your children before you got sick, how many had children after getting sick, and of all of you, how many of you have children who also have CFS? I'm almost 30 and unsure whether I am willing to risk inflicting this illness on a child (I'd say on anyone, but I'd like the people who think it's in our heads to have a big ole dose of it for a while!).

I've spoken to a few doctors on this topic and some dismiss it outright as can't possibly be linked, but I suspect there'll be a few or maybe more than a few of you who suspect there's a mother to child transmission risk.


By October 2, 2011 - 7:37pm

It's interesting that some literature on CFS says that Florence Nightingale may have suffered from it on her return from the Crimean (I think) war. So for a long time it was referred to as Florence Nightingale disease. So I guess the evidence is there that this has been around for a LONG time, just that then as still unfortunately now still happens sometimes, people thought it was all in the mind.

I should have said in regards to my Gran's illness, there was something like 800 people struck down by it, and all with the same "vague" (as it was termed) symptoms, which now tick every box of the CFS checklist.

I've just turned 30. But as I also have Endometriosis, and was advised by my OB/GYN to not put off babies if I could help it, it's on my mind a fair bit. I can say thankfully, I don't come from a line of early menopausal women! So in some respects the clock is ticking a bit. I understand that it's not uncommon for CFS women to have co-existing conditions like Endometriosis also.

I'd love other women to join the conversation, because sometimes it's easier to get a clear picture from what people are going through themselves, IE if their children have also been diagnosed with CFS, or not, than to get a straight answer out of a doctor!!


October 2, 2011 - 7:37pm
By HERWriter Guide October 2, 2011 - 9:38am

Hi again Jac

I agree with you on no-one knowning anything about CFS in the 70s - and that includes America. It really only came to light in the 80s, and even then, people (medical professionals, too) struggled to accept it as a legitimate condition. But that's often the case with something knew because people wonder how something can just....appear.

However, our planet, environment and bodies change all the time, meaning we see new conditions come to light and we also have better diagnostic tools now.

Again, I hope women like you jump in on this conversation. How old are you, Jac? Are you worried about the clock ticking with regard to having kids or are you young enough to not have age as a pressing issue?


October 2, 2011 - 9:38am
By October 2, 2011 - 4:34am

Hi Susan,

Gran's wasn't diagnosed at the time, in fact one thought was that she may have had polio, but it's now well accepted that the outbreak of illness at that point in time was in fact CFS. A young doctor who treated her in the early 1990's is now a CFS researcher where I live, and I reckon he was probably right in his thoughts on the subject, ie that it was CFS in her case. Incidentally, Gran was about 45 at the time of her illness. And from mum and my uncles memories (Gran passed in 1999), it was a couple of years before she was "back to normal".

In mum's case, she wasn't diagnosed at the time either, but had a wonderful doctor who was a lot more open to things outside the text books. To be honest, I doubt many, if any, doctors in Australia at the time of both mum (1978) and Gran's (about 1952/53) illnesses would have even heard of CFS. It was hard enough finding anyone who thought it wasn't in my head when I was diagnosed, which was about twenty years ago now.

My own specialist CFS doctor now considers the family history a very big part of my battle. As did the pediatric immunologist, who was working with a team at Uni SA's med school, who diagnosed it.

Yes, it does only seem to be occurring in the women of the family. But perhaps that's again to do with the higher prevalence of CFS in women than in men. A first cousin of mine shows some signs of mild CFS symptoms too. Also female.

October 2, 2011 - 4:34am
By HERWriter Guide October 1, 2011 - 6:09am

Hi Jac

It would appear that CFS could have these hereditary links based on your own family tree. Were both your grandmother and mom diagnosed back then or are they looking back and agreeing that that is what was going on?

The reason I ask is that women world-wide were deemed to be weak and naturally prone to complaining in the 50s (and beyond), when in fact they had legitimate mental illness (just like men), severe menopausal symptoms (which meant they often had their reproductive organs amputated as casually as if they were in for a haircut), post-partum (natal) depression and the like. Thankfully we've come a long way from there.

I do hope other women who read this can help you, based on their own experiences and I hope that if having a child is what you want that you at least consider it. There are so many "what ifs" in life; and remember that your child will likely have access to far more care and knowledge if he or she does show signs. I also note that it seems to only go down through the female side?


October 1, 2011 - 6:09am
By September 25, 2011 - 2:11am

Thanks for that Susan. I asked because obviously I'm child bearing age, and it's something to consider, and also because not long after I was diagnosed (almost twenty years ago now), my mum, looking for any answer she could find, went to a seminar with the keynote speaker being a professor (I'm sorry, neither of us can recall his name) from the University of Newcastle, NSW, Australia, (we're in Australia), and his answer to the question was absolutely it can be passed mother to child. Mum was keen to know if she had passed it to me, more so at that stage than if I would pass it on, as mum had had a mild battle with CFS for a few years before she had me. My grandmother was also part of what is now considered a "mass outbreak" of CFS in the early 1950s. So with three generations of us having had it to varying degrees, I'm still not sure if risking passing it along is a good idea.

I'd be really keen to know the anecdotal evidence of mothers having CFS prior to having children, and the incidence of the children going on the develop CFS too.


September 25, 2011 - 2:11am
By HERWriter Guide September 24, 2011 - 3:55pm

Hi Jac

Thanks for your post!

There is no direct hereditary link to CFS , or at least nothing that has been found yet and in terms of mother to child transmission - that would include a possible contagion and viral aspect to CFS but this question is under investigation. Since CFS is a relatively new condition (meaning the past few decades), new information is coming out all the time.

You can read a little more about your questions here: http://aboutmecfs.org.violet.arvixe.com/Basics/MECFSCauses.aspx


September 24, 2011 - 3:55pm

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