[Poll] Sex differences in whether mothers or fathers of people with ME/CFS also have ME/CFS-like traits

[SugarSquared]

Unfortunately still not totally inclusive, as I didn't know how to incorporate options for those with less common sex chromosome combinations like X0, XXY, or XXX. Another four options for each possibility? Four options to encompass all? I don't know how common this is, or how many people who do have these genotypes actually know about it.

I don’t know how detailed you can get. You can leave an option for explanation in the comments. Maybe one for “My chromosomes are unclear or not XX and XY” or another for “my parent’s chromosomes are unclear or not XX and XY.”

Because of how being intersex is hidden from people, it’s impossible to know for sure if any of us are answering correctly without genetic testing for us and our families. Intersex can be hidden intentionally by gender assignment surgery at birth or unintentionally by a lack of education leading people not know they are different. I read someone’s experience with having two vaginas and uteruses who only learnt it wasn’t normal to have two vaginal opening when their doctor asked them if they knew they had that after their hysterectomy (because having two uteruses makes periods exceptionally painful). And I don’t think that person had altered chromosomes or even hormones. Like you say, many of us have some chromosomal variation without knowing it.

I think it would be best to provide an option to select an other and explain below, or else I don’t think you’ll have enough options to capture the range of possibilities.

 

[MrMagoo]

My father’s mother had “bad nerves” and never left the house, I only found out recently. I just assumed she was living downstairs and in a wheelchair because she was old.

 

[SNT Gatchaman]

Our family's inheritance is probably a counter-example. My sister's younger daughter (CovidSpice) has it, which might comport. But there was a fatal "neurasthenia" three generations up from me: my mother's, father's (my mat GF), father (my mat-pat G-GF). He would not have passed his X down to his son (my mat GF).

So I suspect the autosomes carry relevant SNPs in our pedigree, and maybe an X chromosome is a risk without any specific mutations, just doing what it does in some way we haven't yet worked out.

I do think my mother had something in the spectrum of this disease at times during her life, but not "full-blown".

 

[mrbennet]

Uh oh, just read the spoiler and it looks like I'm the first xy with a father with cfs like symptoms sorry everyone! His sister also has issues with fatigue and my sister was unwell for a few years around high school. Also, my mother in law has had cfs so I'm really hoping we can crack on with effective treatments (and a cure would be great) before my children are old enough to potentially begin developing symptoms

 

[forestglip]

I don’t know how detailed you can get. You can leave an option for explanation in the comments. Maybe one for “My chromosomes are unclear or not XX and XY” or another for “my parent’s chromosomes are unclear or not XX and XY.”

Because of how being intersex is hidden from people, it’s impossible to know for sure if any of us are answering correctly without genetic testing for us and our families. Intersex can be hidden intentionally by gender assignment surgery at birth or unintentionally by a lack of education leading people not know they are different. I read someone’s experience with having two vaginas and uteruses who only learnt it wasn’t normal to have two vaginal opening when their doctor asked them if they knew they had that after their hysterectomy (because having two uteruses makes periods exceptionally painful). And I don’t think that person had altered chromosomes or even hormones. Like you say, many of us have some chromosomal variation without knowing it.

I think it would be best to provide an option to select an other and explain below, or else I don’t think you’ll have enough options to capture the range of possibilities.

Thanks for the suggestion. I've added those two options.

 

[NelliePledge]

I have an auntie (dad’s sister) who has among other things a diagnosis of Fibromyalgia. Apart from that it is hard to properly unpick my dad’s health because of heavy smoking and drinking, cardiac issues but I do remember him systematically in his late 30s/40s needing to sleep when he got home from work (teaching) my mum didn’t need to rest and her job was just as demanding plus cooking laundry etc. Of all the other people in the family the only one I remember needing to rest regularly was my grandmother - dad/aunt’s mum. Other grandmother had Rheumatoid but I don’t remember her lying down during daytime. Just an inkling there may be something on my dad’s side.

 

[ahimsa]

I have a cousin (assigned female at birth) on my mother's side who has a diagnosis of ME/CFS.

 

[Ravn]

I ticked “XX or I was assigned female at birth. My mother, but not my father, has/had ME/CFS-like traits”

Interestingly, my paternal grandmother was very likely also affected, my father wasn’t

That’s just my observation, neither woman was diagnosed. Whatever it was they had, my mother was relatively mildly affected, my grandmother more severely

 

[Andy]

@Andy, what's the news on the DecodeME X chromosome analysis?

Last I knew it was still part of the ongoing progress.

Will the SequenceME project cover the sex chromosomes?

Yes, as the whole genome of the participants will be sequenced.

 

[Andy]

And as far as my family history of ME/CFS-like symptoms in relatives, my mother and aunt, and their mother, all have/had 'mild' ME/CFS-like symptoms. Also some anecdotal evidence for my great-grandmother, who I never knew, experiencing them as well.

 

[InitialConditions]

My father’s mother had “bad nerves” and never left the house

My Mum has suffered with what she calls "bad nerves". I think we'd call it anxiety these days. I don't really remember it but when I was a kid she had a period that was really quite bad. It's been a theme for many decades. Poor sleep, overthinking, worry, etc. I don't know whether I would class this as ME/CFS-like trait — potentially, given it seems to be some sort of nervous system issue. She is very fit and active and has trouble resting / doing nothing.

There's autoimmune stuff on both sides of my family. My paternal grandfather had type-1 diabetes and my paternal grandmother had Crohn's. My Mum has ulcerative colitis and her sister has Crohn's but less severe than my paternal grandmother. My Mum also has hypothyroidism. But I wouldn't class these as ME/CFS-like traits.

My Dad — who is not at all interested in taking care of himself — has no major health issues and often goes many years without seeing a doctor.

As far as I know there's no one in the family who has had severe fatigue, prolonged recovery after a virus, or anything like that.

 

[MeSci]

I don't think my father ever had ME/CFS - he was a local tennis champion for years!

My mother died when I was only seven (she was 40) from lung cancer.

Basically, I have no idea if there was any ME/CFS in my family apart from me.

By the way, quite a lot of people have unknown parentage, or one or both of their parents are not who they think they are!

 

[MrMagoo]

My Mum has suffered with what she calls "bad nerves". I think we'd call it anxiety these days. I don't really remember it but when I was a kid she had a period that was really quite bad. It's been a theme for many decades. Poor sleep, overthinking, worry, etc. I don't know whether I would class this as ME/CFS-like trait — potentially, given it seems to be some sort of nervous system issue. She is very fit and active and has trouble resting / doing nothing.

There's autoimmune stuff on both sides of my family. My paternal grandfather had type-1 diabetes and my paternal grandmother had Crohn's. My Mum has ulcerative colitis and her sister has Crohn's but less severe than my paternal grandmother. My Mum also has hypothyroidism. But I wouldn't class these as ME/CFS-like traits.

My Dad — who is not at all interested in taking care of himself — has no major health issues and often goes many years without seeing a doctor.

As far as I know there's no one in the family who has had severe fatigue, prolonged recovery after a virus, or anything like that.

The thing is she had “bad nerves” in the true sense, her nervous system wasn’t working as it should. It wasn’t anxiety - she couldn’t go out. She couldn’t walk up and down the stairs to the bedroom or bathroom. She couldn’t get out of bed.
She was well enough to raise 5 children to adulthood, until she wasn’t. She didn’t go to any of their weddings - despite one being in the church two streets away, also wher I was baptised, she didn’t attend.

 

[InitialConditions]

The thing is she had “bad nerves” in the true sense, her nervous system wasn’t working as it should. It wasn’t anxiety - she couldn’t go out. She couldn’t walk up and down the stairs to the bedroom or bathroom. She couldn’t get out of bed.
She was well enough to raise 5 children to adulthood, until she wasn’t. She didn’t go to any of their weddings - despite one being in the church two streets away, also wher I was baptised, she didn’t attend.

Ah ok. Well that is something different, although I'm not sure what.

 

[MrMagoo]

Ah ok. Well that is something different, although I'm not sure what.

Well, a nervous system issue which seems like it may have been ME

 

[Kitty]

Neither of my parents showed any traces, but my mum had a brother and a sister with ME/CFS. Both were mild cases; the brother recovered after about three years, the sister didn't.

 

[Midnattsol]

My mother has two cousins (siblings) who developed ME years apart. The other relative I know of is a fifth or sixth cousin of mine.. my paternal grandmother always slept an hour or two during the day, but I never thought much of it as it was very common among grandparents of other children I knew. My mothers two cousins are both on disability, while I and the other distant cousin are able to work (last I heard they worked half-time as a nurse. Somthibg I doubt I would be able to. I work full time as an advisor).