Please participate in my poll. I have a small sample showing a pattern. I need more data to confirm.

Pick the first (top) answer that applies to you. Then elaborate below in a post.

  • I have ME, and my child or parent has ME.

    Votes: 15 13.9%
  • I have ME, and my sibling, cousin, aunt, or uncle has ME.

    Votes: 7 6.5%
  • I have ME, and my child or parent has an additional health issue*

    Votes: 18 16.7%
  • I have ME, and my sibling, cousin, aunt, or uncle has an additional health issue*

    Votes: 17 15.7%
  • I have ME, but no close blood relation has ME or an additional health issue*

    Votes: 49 45.4%
  • I don't have ME, but my child or partner has ME, and he/she has a child or parent with ME.

    Votes: 0 0.0%
  • I don't have ME, but my child/partner has ME, & he/she has another family member with ME.

    Votes: 1 0.9%
  • I don't have ME, but my child/partner has ME, & has a child/parent with an additional health issue*

    Votes: 0 0.0%
  • I don't have ME, but my child/partner has ME, & has another family member w/additional health issue*

    Votes: 0 0.0%
  • I don't have ME, and I am not caring for anyone with ME.

    Votes: 1 0.9%

  • Total voters
    108

BeautifulDay

Senior Member
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I came across a pattern where a certain group of people with ME had a 100% chance of something. Statistically, they should have had a 5% chance. My sample was small and I presume with a larger sample, it will go below 100%. Yet, even if it proved to be a 10% (double the realistic odds ratio), then it's something that needs to be turned over to researchers and might help all of us down the road. I don't want to bias the poll by telling you more. The percent won't be something you see in the results, but will be in the details and follow-up questions I ask.

Please pick the first (top) answer that applies to you. Please post a response below that includes the details behind your poll answers. The combination of the poll and the details is very important.

*Additional health issues includes: autism/autism spectrum, muscular issue (foot drop, spasticity, weakness…), early onset dementia/Alzheimer’s.

When my research is complete, I'll post the results.

Thanks!
 

Moof

Senior Member
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UK
I have ME, along with H-EDS and ASD.

My late Mum's sister and brother also had ME and H-EDS. The autism comes from my Dad's side of the family, so they were unaffected by it.

My Mum's family were also affected by premature dementia, likely caused by B12 deficiency. (We're all very prone to h. pylori infection, which causes long-standing gastritis that eventually makes it impossible to absorb enough B12 from food; the relatives with gastritis were the only ones affected by premature dementia).
 

BeautifulDay

Senior Member
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If you're so specific what 'additional health issues' includes, can one assume you don't mean more common CVD, Cancer, etc?
Great question @pamojja

You're correct. I'm not looking for common things like cancer, clogged arteries, Alzheimer's in someone 89 years old, etc.... Yet, there are things that come more often for people on this site. For ex., @Moof added H-EDS. That's something I've seen several times, so that's good to add. When in doubt, people can just put in the details.

Thanks!
 

BeautifulDay

Senior Member
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I have me/ CFS.
So has my mother and my brother.

But what includes in additional health issues?
If you answered ME in a mother and brother, then you don't need to add the additional health issues. However, if you want to list them anyway, more info is never a bad thing.

I'm interested in the things we see on PR more than we should. The health issues like autism/autism spectrum, muscular issues (foot drop, spasticity, weakness…), early onset dementia/Alzheimer’s, severe OCD or severe ADHD, gastroparesis, aminoaciduria. Things that are just happening much more often to people on this site than in others. But not things expected for somebody's age.
 
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I wasn't sure how to respond. I have ME. My late mother, while never diagnosed with ME, had all of the symptoms of it. She went on to be diagnosed with gastro-paresis and then later on with Parkinson's. However, she had all of the symptoms of ME for years before being diagnosed with the other things. My brother appears to have all of the symptoms of ME, although, he would never admit it because he doesn't want the stigma attached to it. He is retired and spends most of his time at home and rarely goes anywhere. Whenever anyone asks him why he can't do certain things he will say it is because he has migraines but it is obvious to me there is more going on then that. I think he has heard the things people have said about me with my ME and doesn't want them saying the same things about him so he denies it.
 

lafarfelue

Senior Member
Messages
396
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1,084
Location
Australia
I have ME and POTS, my Mum has POTS, and I wouldn't be surprised in my maternal grandmother had POTS too.

I also have a suspicion that my maternal line has EDS or something like EDS due to a number of varied (but similar when looking at it from a connective tissue angle!) symptoms/illnesses that my grandmother, aunt, mother and I have. Still looking into this (unfortunately somewhat difficult to get genetically tested for EDS where I am in Australia).
 

Learner1

Administrator
Messages
3,486
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6,033
Location
Pacific Northwest
I have ME, Hashimotos and celiac. Had uterine cancer.

Family members have...

Mother - Parkinson's, CLL leukemia, celiac, Hashimotos
Mom's Mom - thyroid cancer, nervous breakdown

Father - Non-Hodgkin's lymphoma, stroke
Dad's Dad - stroke
Dad's Mom - "hypochondriac until she dropped dead at 62 of a heart attack"

Sibling - rare SNP - congestive heart failure
Sibling and nephew - Aspergers

Children - Hashimotos, celiac, chronic Lyme

We are crappy at methylation...
 

StarChild56

Senior Member
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2,889
I answered that I have ME (dx is CFIDS) and my child/parent has other health condition. In addition to CFIDS, I have:
  • Chronic fatigue and immune dysfunction syndrome
  • Postural orthostatic tachycardia syndrome
  • Orthostatic hypotension
  • Migraine
  • Autoimmune autonomic neuropathy
  • Chronic pain
  • Idiopathic mast cell activation syndrome
  • Small intestinal bacterial overgrowth
  • Hypothalamic-adrenal dysfunction
  • EBV (Epstein-Barr virus) viremia
  • Ehlers-Danlos disease
  • Idiopathic mast cell activation syndrome
  • Compound heterozygous methylenetetrahydrofolate reductase mutation C677T/A1298C
  • Sjogrens syndrome
  • Sicca
  • Asthma
  • Allergies
  • Severe C Spine herniations, indenting the thecal sac, stenosis, bulging disc that is severe.
  • Severe DDD and Facet disease in low back
One of my children has ADHD, and is probably on the Autism Spectrum. I suspect my father is on the spectrum and may also have ADHD.

My cousin has ADHD and is on the Autism Spectrum.

After reading the poster after me, it reminded me my great aunt who is in her 80s (maybe early) was diagnosed with Hashimoto's not long ago (could be a year or so). Do not know if it is relevant.
 
Last edited:

Wolfcub

Moderator
Messages
1,272
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3,172
Location
SW UK
I am not diagnosed yet but my illness is very ME/CFS-like.

No one in my family had ME as far as I know.

These people bless them, have all passed now except the last two.
Mother: Rheumatoid arthritis, ovarian cancer, heart murmur
Father: Hodgkins lymphoma, COPD. pneumonia

Grandmother: kidney failure, heart failure
Grandfather: lung disorder after being gassed 1st world war, final heart attack

Other grandmother: heart failure, heart attack
Other grandfather: lung cancer.

Aunt 1: Leukaemia
Aunt 2: Heart attack
Cousin: Bowel cancer at a very young age

Brother: Anxiety and poss. borderline Asperger's but otherwise very strong and well.
Me....what a mess suddenly! haha
 

taniaaust1

Senior Member
Messages
12,715
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14,638
Location
Sth Australia
I came across a pattern where a certain group of people with ME had a 100% chance of something. Statistically, they should have had a 5% chance. My sample was small and I presume with a larger sample, it will go below 100%. Yet, even if it proved to be a 10% (double the realistic odds ratio), then it's something that needs to be turned over to researchers and might help all of us down the road. I don't want to bias the poll by telling you more. The percent won't be something you see in the results, but will be in the details and follow-up questions I ask.

Please pick the first (top) answer that applies to you. Please post a response below that includes the details behind your poll answers. The combination of the poll and the details is very important.

*Additional health issues includes: autism/autism spectrum, muscular issue (foot drop, spasticity, weakness…), early onset dementia/Alzheimer’s.

When my research is complete, I'll post the results.

Thanks!
Cause you said pick the two answer I only clicked one answer that being that I have other family members who have ME/CFS too as I have a sister and 2 first cousins with it, so there is 4 of us with this. (Their fathers are different brothers of my father.. so 3 of my grandparents sons have daughters who have ME). Im sure it is coming down through my grandmother (dads mother) who had FM (and interesting she was connected with an area which had a big outbreak of ME in the 1950s!).

In this same side of the family, we have Aspergers, celiac disease and mast cell disorder (systemic mastocytosis which my uncle, dads brother has). I do think there is link between Aspergers and ME as Ive spoken to many who have ME and have kids with Aspergers or on the autism spectrum... and of cause it is well known the link between FM (as my grandmother had) and ME/CFS