Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

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

Discussion in 'General Symptoms' started by BeautifulDay, Oct 10, 2018.

?

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

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

    11 vote(s)
    14.3%
  2. I have ME, and my sibling, cousin, aunt, or uncle has ME.

    6 vote(s)
    7.8%
  3. I have ME, and my child or parent has an additional health issue*

    12 vote(s)
    15.6%
  4. I have ME, and my sibling, cousin, aunt, or uncle has an additional health issue*

    13 vote(s)
    16.9%
  5. I have ME, but no close blood relation has ME or an additional health issue*

    34 vote(s)
    44.2%
  6. I don't have ME, but my child or partner has ME, and he/she has a child or parent with ME.

    0 vote(s)
    0.0%
  7. I don't have ME, but my child/partner has ME, & he/she has another family member with ME.

    0 vote(s)
    0.0%
  8. I don't have ME, but my child/partner has ME, & has a child/parent with an additional health issue*

    0 vote(s)
    0.0%
  9. I don't have ME, but my child/partner has ME, & has another family member w/additional health issue*

    0 vote(s)
    0.0%
  10. I don't have ME, and I am not caring for anyone with ME.

    1 vote(s)
    1.3%
  1. BeautifulDay

    BeautifulDay Senior Member

    Messages:
    329
    Likes:
    915
    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!
     
    nandixon and Moof like this.
  2. Moof

    Moof Senior Member

    Messages:
    305
    Likes:
    732
    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 likes this.
  3. pamojja

    pamojja Senior Member

    Messages:
    1,182
    Likes:
    1,300
    Austria
    If you're so specific what 'additional health issues' includes, can one assume you don't mean more common CVD, Cancer, etc?
     
    BeautifulDay and Hufsamor like this.
  4. Hufsamor

    Hufsamor Senior Member

    Messages:
    158
    Likes:
    406
    Norway
    I have me/ CFS.
    So has my mother and my brother.

    But what includes in additional health issues?
     
    BeautifulDay likes this.
  5. BeautifulDay

    BeautifulDay Senior Member

    Messages:
    329
    Likes:
    915
    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!
     
  6. BeautifulDay

    BeautifulDay Senior Member

    Messages:
    329
    Likes:
    915
    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.
     
  7. nandixon

    nandixon Senior Member

    Messages:
    867
    Likes:
    2,208
    I have ME/CFS and my mother had early onset Alzheimer's (in her 50's) and my father possibly suffered from schizophrenia although this isn't certain.
     
    BeautifulDay likes this.
  8. ivorin

    ivorin Senior Member

    Messages:
    152
    Likes:
    462
    I have ME, I'm the only one in the extended family with health issues.
     
    BeautifulDay likes this.
  9. junkcrap50

    junkcrap50 Senior Member

    Messages:
    325
    Likes:
    477
    I have CFS. My father has CFS. My mother had chronic post-mono viral fatigue (or CFS) and cured/reversed it with exercise. My sibling has either mild cognitive-based CFS or some unknown chronic illness that's similar to CFS.
     
    BeautifulDay likes this.
  10. Sundancer

    Sundancer Senior Member

    Messages:
    529
    Likes:
    1,237
    Holland
    I have ME, my son has autism, but...his father, my ex-partner, also has autism.
     
    BeautifulDay likes this.
  11. lnester7

    lnester7 Seven

    Messages:
    2,724
    Likes:
    3,958
    USA
    I See a lot of lymphoma ( more than general population ) on families of ME sojern, lupus, and tissues disorders. But the most prevalent is NLynphoma
     
  12. hopeful2

    hopeful2

    Messages:
    20
    Likes:
    51
    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.
     
  13. lafarfelue

    lafarfelue Senior Member

    Messages:
    324
    Likes:
    907
    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).
     
    BeautifulDay likes this.
  14. Elvie

    Elvie

    Messages:
    4
    Likes:
    10
    I have ME and my daughter has IBS.

    Also my Mum had RA , my Nan had RA , one Aunt has Lupus and another has MS.
     
    BeautifulDay likes this.
  15. geraldt52

    geraldt52 Senior Member

    Messages:
    457
    Likes:
    1,728
    Too late really, but it would have been interesting to include a choice for those who have ME, and who have a person who is in close contact with them, who is not a blood relative, that has also has ME. It isn't unique, just uncommon, but my wife and I both have ME, but our adult daughter does not.
     
  16. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,038
    Likes:
    5,191
    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...
     
  17. Forçe e Honra

    Forçe e Honra Senior Member

    Messages:
    716
    Likes:
    1,364
    Northern California
    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: Oct 11, 2018
    BeautifulDay and Learner1 like this.
  18. S-VV

    S-VV Senior Member

    Messages:
    138
    Likes:
    131
    I have ME, Lyme and thyroid anti-TPO (but normal TSH).

    My mother has fibromyalgia (since young) and Hashimoto's.
    My father has IBS and restless leg syndrome.
     
  19. Wolfcub

    Wolfcub Senior Member

    Messages:
    467
    Likes:
    1,034
    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
     
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    12,358
    Likes:
    13,694
    Sth Australia
    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
     

See more popular forum discussions.

Share This Page