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ME in families

pibee

Senior Member
Messages
304
Is this just my impression or it really is that ME has bigger gene/hereditary component than "other" autoimmune diseases?

In my family we all have Hashimoto (mom,sister,myself and i'm quite certain my grandmom had too), as for ME, i have most pronounced, but based on all my moms descriptions of her fatigue - she has a very mild form of ME too (she never took 1 day off from work in 40 years of working so it really is mild) but she is brain foggy and once she is in house, she is very lazy to go even 200 meters by foot. i remember she was like this 20 yrs ago too when i was kid
anyway, she def has ME. and, she has many bartonella symptoms so i think she has bart.

my sister even mildest form but she also feels it (she has a bit of fibro too, and Sjogren antibodies so maybe could be not-ME fatigue)


I had Lyme specific symptoms from very early, so there is possibility i have congenital Lyme and my sister has some specific symptoms, ... so maybe this is big trigger for my family's case ... but not sure what to believe anymore.

..when i look at other diseases like MS, ... there doesnt seem to be so many families as ME with more than 1 member having it?
 
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Hip

Senior Member
Messages
17,824
One study that actually looked at the prevalence of ME/CFS in close relatives of ME/CFS patients found that the risk of developing ME/CFS was 2 to 3 times higher in these relatives, compared to the general population.

To put that in context: the prevalence of ME/CFS in the general population is around 1 in 500. So if the risk is doubled in relatives, presumably the prevalence of ME/CFS in close relatives is around 1 in 250.


The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.

So that would equate to around 1 in 50 spouses also developing ME/CFS.
I and my colleague did some research into family members of sporadic cases of CFS. (Underhill, O’Gorman) We found that patients’ genetically unrelated spouses and partners had an increased prevalence of an illness diagnosed as CFS compared with the community prevalence, with a relative risk of 7.6 - 13.5, (3.2% of spouses had the illness compared with community prevalence of 0.42% and 0.235% (Jason et al 1999, Reyes et al. 2003). Additionally, 6.5% of spouses had idiopathic chronic fatigue

So genetically unrelated spouses or partners of ME/CFS patients had 10 times the prevalence of ME/CFS.



If we assume ME/CFS is caused by viral infection, perhaps in combination with local toxic factor such as mold in the home, it is clear that spouses or partners living in the same house are going to be exposed to the same factors. The viruses linked to ME/CFS are spread by saliva, and so will be very easily spread by kissing and close social contact.
 
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pibee

Senior Member
Messages
304
I posted the following elsewhere:


One study that actually looked at the prevalence of ME/CFS in close relatives of ME/CFS patients found that the risk of developing ME/CFS was 2 to 3 times higher in these relatives, compared to the general population.

To put that in context: the prevalence of ME/CFS in the general population is around 1 in 500. So if the risk is doubled in relatives, presumably the prevalence of ME/CFS in close relatives is around 1 in 250.


The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.

So that would equate to around 1 in 50 spouses also developing ME/CFS.


So genetically unrelated spouses or partners of ME/CFS patients had 10 times the prevalence of ME/CFS.



If we assume ME/CFS is caused by viral infection, perhaps in combination with local toxic factor such as mold in the home, it is clear that spouses or partners living in the same house are going to be exposed to the same factors. The viruses linked to ME/CFS are spread by saliva, and so will be very easily spread by kissing and close social contact.

i am not sure about the stats for MS etc but i think this is not much higher chance (2-3x ) than for other AI diseases... which is good ... (its scary to think it's more genetic!)

Although I do believe viral trigger is most common, not sure why would we assume it's CAUSED by viral infection. This is too far reaching statement imo

edit: i missed the part on spouses, that info is WOW!

I often times wonder if my dad had also ME/CFS (he died young from lung cancer) because he'd need that "quiet" time in bed, in dark room, but it overlaped w cancer i thnk, not sure how many years before 4th stage you can say it's undiagnosed cancer. He liked to walk a LOT, so if he had ME it was atypical ie only cognitive.
 
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Wishful

Senior Member
Messages
5,684
Location
Alberta
Maybe partners share epigenetic triggers? They both get some minor virus, which causes epigenetic changes, which leads to cellular dysfunction triggered by a later immune activation? Just a thought.
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
So genetically unrelated spouses or partners of ME/CFS patients had 10 times the prevalence of ME/CFS.

This is very interesting. So either it may be that a virus or other microbe (or some rare variant of the virus) is the cause and spouses infect each other, or there may be environmental triggers to which spouses with similar living conditions and lifestyles are exposed in a similar way. Or a combination of both.

Spouses usually live in the same house, eat the same food, often have similar lifestyles in terms of excercise, sunlight exposure etc.

The same may be true for close relatives, but to a lower degree, so that would be consistent with the lower incidence among close relatives as compared to spouses.

So maybe genetics isn't such an important factor after all.

But I don't see a lot of "CFS couples" in the forum...
 

Hip

Senior Member
Messages
17,824
But I don't see a lot of "CFS couples" in the forum...

I can think of a few people on this forum who have at least one additional ME/CFS patient in their immediate family.

Given the 10-fold increased prevalence of ME/CFS in spouses or partners, out of all the forum members who actually have a spouse or partner, you would expect 1 in 50 of these to have a spouse or partner who has ME/CFS.

I am not sure how many people here do have partners, but let's assume a figure of say 50% (although that may be a little high given the difficulty in dating with ME/CFS). So then you would expect 1 in every 100 members of this forum to have a spouse or partner with ME/CFS.
 
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Wishful

Senior Member
Messages
5,684
Location
Alberta
Genetics might not be a major factor, but epigenetics (changes to how genes are expressed in the individual) might be. Food, sunlight exposure, etc, have epigenetic effects. This seems like a very reasonable explanation for ME, and would explain the prevalence in people who have lots of contact with ME patients.
 

Hip

Senior Member
Messages
17,824
Epigenetic changes are just part of how our body responds to environmental factors. So by saying epigenetics may be involved, you are not saying anything more than the statement that environmental factors may be at play.
 
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5150

Senior Member
Messages
360
[QUOTE="Hip, post: 940888


The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.



Another name for this phenomenon is " Contagious." . . . just what I heard...[/QUOTE]
 

dreampop

Senior Member
Messages
296
[QUOTE="Hip, post: 940888


The following excerpt from a report by Dr Rosemary Underhill says that in spouses or partners of ME/CFS patients, the prevalence of ME/CFS was in the order of 10 times the prevalence found in the general population.



Another name for this phenomenon is " Contagious." . . . just what I heard...
[/QUOTE]

Actually the correct word, I think, is unvalidated.
 

unto

Senior Member
Messages
172
This is very interesting. So either it may be that a virus or other microbe (or some rare variant of the virus) is the cause and spouses infect each other, or there may be environmental triggers to which spouses with similar living conditions and lifestyles are exposed in a similar way. Or a combination of both.

Spouses usually live in the same house, eat the same food, often have similar lifestyles in terms of excercise, sunlight exposure etc.

The same may be true for close relatives, but to a lower degree, so that would be consistent with the lower incidence among close relatives as compared to spouses.

So maybe genetics isn't such an important factor after all.

But I don't see a lot of "CFS couples" in the forum...

in the forum the users are too exposed, have children who read on the forum, have friends who know their nik name, can not say that they have a sick spouse as themselves, it would be like admitting to having an infectious disease and to have it passed on to family members ........... and already that they are marginalized from the social life because of the rhythms that dictates the ME they fear to be more for the infectiousness.
they could also lose the affection of their spouse and resent their children.....

certainly that there are sick people due to transfusions
 

notmyself

Senior Member
Messages
364
in my family there is defiantelly no predisposition to ME..everyone is extremelly active and healthy, my 89 grandmother cuts woods for fire everyday ans she do something all the time..i was the same ,active and healthy, the problem with this is that is even harder for them to understand what i am going trough..
 

andyguitar

Moderator
Messages
6,595
Location
South east England
Family members, if living together, will be exposed to the same environmental health hazards. They will also have other things in common and may use the same methods to treat any illness they have. Diet may also be similar. So there does'nt have to be a genetic connection.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Epigenetic changes are just part of how our body responds to environmental factors. So by saying epigenetics may be involved, you are not saying anything more than the statement that environmental factors may be at play.

I thought about what I had written afterwards, and wondered if 'epigenetics' really had much meaning. I suppose it does distinguish it from toxin build-up, tissue damage, and other such things, and it does offer specific options for treatment, so it might have some value as a word.
 

Hip

Senior Member
Messages
17,824
@Wishful
Epigenetic changes arising from environmental factors can sometimes be passed from one generation to the next; but generally speaking, the epigenetic status of an individual is determined by the environmental factors that individual has personally experienced.
 
Messages
36
I would be inclined to believe it has possible genetic links that go beyond environmental factors. I had onset of ME when I was 12, no other family members both immediate or extended had anything similar. My brother then caught covid in Feb 2022 and had the same severe onset post-viral symptoms I had. Went from a regular gym goer to not being able to stand up for more than 5 minutes at first. He recovered fully in the space of ~4 months, presumably because he actually rested and didn't push, unlike myself.

Environmental factors in upbringing might have had some kind of influence, but he moved out of home at 16, returned for 2 years when he was around 20, and was moved out of home for another few years by the time he became ill. Luckily my older sister hasn't had any brushes with post-viral illness so it's not a 3/3 clean sweep there yet.