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Anyone heard of two siblings with ME?

Messages
16
Hey, just a random question to throw out there since I searched it on here and nothing came up. I'm just curious about whether those of you with siblings have seen them struck down with ME as well as yourselves, or if you've heard of anything like that before.

My brother has similar symptoms to me (his main ones are back pain and headaches), and his doctor has also thrown out the diagnosis of ME so it's something we've been asking the doctors, and they don't seem to have heard of any kind of familial or genetic link (but they don't seem to know anything about ME in the first place).

I've found a couple of websites talking about studies done on first-degree relatives that suggest a genetic factor of the illness, and a higher likelihood of closest relatives being affected.

Anyone know whether any concrete evidence has been found in that area or if anyone has personal experience with it?
 

NotThisGuy

Senior Member
Messages
312
we have in germany a somewhat famous case with two sisters that got ME.
At first the older one and I think few years later the younger one.
Both bedbound. But the older one recently started taking antivirals and is somewhat better now.
 

ebethc

Senior Member
Messages
1,901
I'm adopted and my biological mother and her oldest daughter (after me) have CFS... I didn't meet them 'til my 20s, and we have ~90% overlap in symptoms/triggers
 

Dechi

Senior Member
Messages
1,454
There is a twin study somewhere that I can’t remember at the moment. It might even be Canada. Althoug I think this study is concentrating on twins wih one PWME and one without.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
I'm just curious about whether those of you with siblings have seen them struck down with ME as well as yourselves, or if you've heard of anything like that before.
Yes, it is known to occur. Though not all PR members are going to see your post, I can think of 2 members who have this pattern in their family and a number of others where one sibling has full ME/CFS and another has something that may be associated genetically like Ehlers-Danlos Syndrome.
 

Dolphin

Senior Member
Messages
17,567
There's this study:

BMC Neurol. 2011 May 27;11:62. doi: 10.1186/1471-2377-11-62.
Evidence for a heritable predisposition to Chronic Fatigue Syndrome.
Albright F1, Light K, Light A, Bateman L, Cannon-Albright LA.
Author information

Abstract
BACKGROUND:
Chronic Fatigue Syndrome (CFS) came to attention in the 1980s, but initial investigations did not find organic causes. Now decades later, the etiology of CFS has yet to be understood, and the role of genetic predisposition in CFS remains controversial. Recent reports of CFS association with the retrovirus xenotropic murine leukemic virus-related virus (XMRV) or other murine leukemia related retroviruses (MLV) might also suggest underlying genetic implications within the host immune system.

METHODS:
We present analyses of familial clustering of CFS in a computerized genealogical resource linking multiple generations of genealogy data with medical diagnosis data of a large Utah health care system. We compare pair-wise relatedness among cases to expected relatedness in the Utah population, and we estimate risk for CFS for first, second, and third degree relatives of CFS cases.

RESULTS:
We observed significant excess relatedness of CFS cases compared to that expected in this population. Significant excess relatedness was observed for both close (p <0.001) and distant relationships (p = 0.010). We also observed significant excess CFS relative risk among first (2.70, 95% CI: 1.56-4.66), second (2.34, 95% CI: 1.31-4.19), and third degree relatives (1.93, 95% CI: 1.21-3.07).

CONCLUSIONS:
These analyses provide strong support for a heritable contribution to predisposition to Chronic Fatigue Syndrome. A population of high-risk CFS pedigrees has been identified, the study of which may provide additional understanding.

PMID:

21619629

PMCID:

PMC3128000

DOI:

10.1186/1471-2377-11-62
[Indexed for MEDLINE]
Free
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-62

However a concern I have is that only a fraction of patients get diagnosed. If one family member gets diagnosed, other family members are probably more likely to become aware of the condition. Also they may become aware of pathways to get diagnosed.

Even if taken at face value, it looks to me that some conditions are a lot more inheritable.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Former members here Trishrymes and MrsSowester both are ill with daughters that also have ME. There are others but can't recall all off the top of my head.
Justy maybe as well. Graham and his son. Though there are also many who get ill early in life and are too ill to start families too.
 

kurt

Senior Member
Messages
1,186
Location
USA
Parent and siblings here. I have CFS as does my oldest daughter. One son has some symptoms and is probably pre-CFS. Another daughter has mutiple chemical sensitivities. It's both good and bad to have multiple family members with CFS. We get to compare notes, and there is total acceptance, which is nice. But the burden on the healthy family members is rough.
 

SB_1108

Senior Member
Messages
315
My sister and I both have ME. I was diagnosed in my twenties but she was diagnosed in her forties. In Jen Brea’s TED talk she mentions that ME sometimes runs in families. I’m not sure where that source was from?
 
Last edited:
Messages
10
Location
Canada West Coast
My sister had a fairly mild case about 25 years ago and now seems to be in remission. I originally was sick with this back in the mid 70’s but went into remission for a long time - now have been much sicker for the past 6 years after having a tetanus shot.
 
Messages
88
Yes we both first started getting symptoms at 16. My brother has significant ME - housebound not bedbound. Can't read or learn at all anymore.

I can get out of the house a few times a week, however, I have fairly severe POTS. I have presyncope with any standing and occasionally use a wheelchair. I am well enough to work casually and go for short walks. I was able to play basketball a year ago, now a 10 minute walk throws me into PEM. Also now 2 of my cousins have ME, also my maternal grandma.
 
Messages
16
Thanks guys! I had a feeling that this was a pretty common occurrence, so this should surely point to some kind of genetic factor in the disease in my opinion. Totally guessing here, but my brain's saying it's some kind of recessive allele, maybe a faulty marker (I did a little bit of biology and Genetics was my favourite topic). I'm trying to better understand it at the moment and wrapping my head around the research that's already been done is helping a lot.

Though there are also many who get ill early in life and are too ill to start families too.

That'll be the case with us, too. We are both teenagers and we're already pretty much housebound except on the occasional good day.

My sister has CFS, too. She is 4 years older than me and got sick around 3-4 years before me. So we even were the same age when we got sick.

That's the same with us! We're two years apart and I got sick two years before him. We were both ten.

My sister and I both have ME. I was diagnosed in my twenties but she was diagnosed in her forties. In Jen Brea’s TED talk she mentions that ME sometimes runs in families. I’m not sure where that source was from?

That's actually the video that sparked this question! I was confused about the same thing.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
this should surely point to some kind of genetic factor in the disease in my opinion.
Have a look at:
Using Davis’s genomics data from the Open Medicine Foundation’s Severely Ill Big Data Project, Phair has examined the exons (the part of the DNA which actually codes for proteins) of 100-plus genes involved in energy production. First, a variant commonly found in the general population — but which was more commonly found in ME/CFS — popped up. Digging deeper two more gene variants were found.
 
Messages
47
Location
Los Angeles
I have been ill since aged 40 with fairly severe fibro. My younger brother has had ME twice, recovered both times. His son however, now 23, has had ME since birth. I'm convinced there must be something genetic in it.
 
Messages
93
Location
PA/NJ
My sister and I both have ME. She Is 7 yrs older than me. We both became ill in our mid twenties. She graduated magna cum luade from a prestigious college. She had to quit her job as a highschool teacher when it hit. She is almost 50 now and is not doing well. I got sick my sr year of college. I was an athlete. I am unable to work and never had a career. Each year we have less energy. This illness is slowly taking the both of us. We both have been sick for approximately 20 years and it has completely devastated our lives. Much of the time it doesn’t seem real, a living nightmare. We both suffer post exertional malaise as our primary symptom. We also deal with insomnia depression and all of the other symptoms that come along with this illness. I have learned over 20 years that you can’t fight this illness. It always wins. Mind over matter wont work; I’ve tried infinite times.