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

[forestglip]

I thought it might be interesting to see if there are any patterns that differ for parental inheritance depending on whether a person with ME/CFS is male or female.

For the poll, it is about chromosomal sex (i.e. XX is female, XY is male) or sex assigned at birth if that is not known, not gender.

With regard to parental trait, it's somewhat subjective. Basically, do you think one or both of your parents has something you would consider fairly similar to the ME/CFS you have? Do you think there's a good chance you partially inherited it from them based on the symptoms, even if they haven't been diagnosed with ME/CFS or the symptoms aren't exactly the same?

Brief note in the spoiler about why this might be interesting. If you're going to answer the poll, please do so before reading this to prevent it biasing your answer.

Spoiler

For example, if ME/CFS was mainly linked to a mutation on the X chromosome, it'd be impossible for the mutation to be passed from fathers to sons (XY), so we might see very few males with ME/CFS who have fathers but not mothers with ME/CFS, as compared to females with ME/CFS.

Edit: I've added a couple options for if you know or suspect that you or your parents have less common sex chromosome genotypes.

Please only answer the poll from the perspective of yourself, but please feel free to expand on inheritance patterns in other family members in a post.

 

[ChronicallyOverIt]

My mother said she experienced “something” similar to CFS in her early 20s, she recovered completely. She called it burnout at the time but now she wonders if it could have been similar to what I have now. Answered accordingly. Very interesting question!

 

[Peter T]

I selected ‘my mother had ME like traits’ but wonder if that was appropriate. She had a number of health issues including hypothyroidism, which would account for any apparent ME related issues.

Though an interesting exercise, given both the subjective nature of any response as well as us not being a particularly random sample, this is perhaps even less reliable than our usual polls.

 

[forestglip]

I selected ‘my mother had ME like traits’ but wonder if that was appropriate. She had a number of health issues including hypothyroidism, which would account for any apparent ME related issues.

Yes, I think it shouldn't be made to be too complicated, and should just be about symptoms, so I would say that answer makes sense.

Though an interesting exercise, given both the subjective nature of any response as well as us not being a particularly random sample, this is perhaps even less reliable than our polls.

Certainly. I think worth a look though, and might give some researchers an idea to do similar but more formal research.

 

[Trish]

My father had a post op infection and prolonged ill health for several years after that in the 1930's, he had several recurrences of what the GP called a recurring virus that was similar to ME/CFS I can remember in the 1950's that kept him off work and resting for months. Treatment back in those days was resting convalescence until you recovered. He was healthy and active in between these episodes as far as I know. When I got ME/CFS he wrote to me to tell me he thought he had had it too.

I have a daughter with ME/CFS and a niece (sisters daughter) with Long Covid/ME/CFS. Theoretically that could all come from my father's X chromosome if there's chromosomal inheritance and if we all ended up with the same X chromosome.

 

[AliceLily]

My father was working in his 80's before he passed. My mother never showed signs of ME/CFS either. My mother did have a reaction to a flu vaccination around 2015 after having had no problems for the 3 previous vaccination. She became very ill with vertigo after the flu vaccination, day after, and was sick for six weeks and we found out that she had gone deaf in one ear. I was very worried about her because I thought she was going down with ME/CFS. Thankfully she didn't.

Maybe I got the 'reactiveness' to the medication thing through her? I don't know if some us are at more risk than others in this way.

I did vote 'neither'. Whether that is right I don't know.

 

[AliceLily]

I just want to add that I never read the spoiler before I answered and posted. Wasn't I good!

 

[Jonathan Edwards]

Have you done a power calculation?
Interesting to see what transpires.

 

[forestglip]

Have you done a power calculation?

Ha no, my power calculation is hope and pray for a large sample size.

 

[Jonathan Edwards]

Ha no, my power calculation is hope and pray for a large sample size.

How did I guess?

 

[SugarSquared]

I doubt my mother has ever experienced anything similar to ME/CFS. However, I selected that she has/had ME/CFS-like traits because I feel I have inherited most of my health issues from her. She has and had migraines, vasovagal syncope (a lot more than me), pelvic pain, depression, and chest pain that is likely GERD. I don't think she's ever experienced fatigue in the same way as me. All I seem to have inherited from my dad is genetic risk for blood clots and myopia.

 

[StellariaGraminea]

If anything my parents were/are the opposite of ME... especially my mother. Unusual energy still for her elderly age though she was extremely tired after 2020 covid infection for months & wondered if she'd ever get over it + raspy voice, but she didn't get the weird constellation of symptoms I got.
I do have a 1st cousin on her side that had PVF after EBS in their 20s many yrs ago and ? recovered, and seems to now have developed LC ?ME (we're not in touch). But she also has an uncle on the side not related to me, who has had ME for years, so perhaps the link, if any, comes from there.

 

[Clio]

Thanks for the inclusive poll options. Unfortunately both of my parents are the epitome of health.

 

[forestglip]

Thanks for the inclusive poll options.

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.

 

[StellariaGraminea]

Not to derail the thread in a different direction, but I was wondering aside from family/genetics?, given the unclear incidence of ME in the population, how many people with ME the average person might be expected to know directly or know of through a degree or two of connection, in terms of their social / family / work circles. Not sure if there is a thread anywhere that discusses that, might be an interesting topic.

EDIT to add: excluding those known through patient groups / advocacy / because of own diagnosis.

 

[Hutan]

I managed to bring in some extra special bias to your survey FG, by answering for my son rather than me!

I have ME/CFS, my son does too, I am his mother. My daughter had ME/CFS for a couple of years but recovered. I don't think there is any ME/CFS in my husband's family.

My parents did not have/do not have ME/CFS, but I'm 99% sure that my father's mother did. My father's sister (who does not have ME/CFS) had two children without ME/CFS, but has a grand daughter with ME/CFS, the daughter of her son.

My sister does not have ME/CFS, but her son has had a mild version.

That's all consistent with a risk gene on the X chromosome, I think.

@Andy, what's the news on the DecodeME X chromosome analysis? Will the SequenceME project cover the sex chromosomes? (Sorry if that has been announced/answered before.)

 

[Axel]

Many of my father’s siblings, as well as my grandfather, seem to have needed a great deal of sleep – during the day as well as at night – but their energy levels upon waking appeared normal. One of my aunts may experience episodes similar to PEM. However, my father and some of his brothers display psychotic traits, including paranoid delusions.

 

[forestglip]

I managed to bring in some extra special bias to your survey FG, by answering for my son rather than me!

I was wondering whether I should make it explicit, but I do think it changes the interpretation if a parent is answering for their child. It'd skew the percentages towards parents having ME/CFS, and I think might affect the relative proportion between mothers and fathers too, though I'm not positive about that.

Your story is very interesting. I would probably answer neither parent, though.

 

[Axel]

Given the prevalence, one might expect fathers to pass on the trait without having developed it themselves.

 

[Hutan]

Your story is very interesting though. I would probably answer neither parent, though.

In the interests of the integrity of the survey I have changed my answer.