The Family Member ME/CFS Prevalence Poll Take II

Do one of the members of my extended family have an ME/CFS or ME/CFS Like condition?

  • An immediate family member - father, mother, siblings, children has been diagnosed with ME/CFS

    Votes: 136 29.2%
  • A significant other or partner has been diagnosed with ME/CFS

    Votes: 17 3.6%
  • A secondary Relative - aunt, uncle, cousin, grandparents, etc. has been diagnosed with ME/CFS

    Votes: 72 15.5%
  • A far flung relative has been diagnosed with ME/CFS

    Votes: 18 3.9%
  • An immediate family member has mysterious fatigue but has not been diagnosed with ME/CFS

    Votes: 97 20.8%
  • A significant other, etc. has mysterious fatigue not been diagnosed with ME/CFS

    Votes: 19 4.1%
  • A secondary family member has mysterious fatigue but has not been diagnosed with ME/CFS

    Votes: 46 9.9%
  • A far flung Relative has mysterious fatigue but has not been diagnosed with ME/CFS

    Votes: 8 1.7%
  • No family members have been diagnosed with ME/CFS or have an undiagnosed fatiguing condition

    Votes: 159 34.1%

  • Total voters
    466

justy

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For the record:
My biological mother, who I did not grow up with has been diagnosed with M.E. Her neice (my maternal cousin) has been diagnosed with M.E. I have M.E. My eldest daughter was sick at 15 and bedbound, at the same time that I had a severe relapse. She is much better now (age 21) but has poor stamina and other issues which have never resolved. Her onset, with slow but gradual recovery with no treatment in early 20's is very similar to my initial event 20 years ago. However I worry about her health as I have had a sevre relapse 6 years ago that I am still recovering from, after man y years of only being mildly affected.

She seems to be going down a similar path. My youngest son is a worry also as he often feels very worn out and tired, especially from mental exertion - he finds piano lessons and practise exhausting at times - although he has no other symptoms currently.

My eldest daughter and youngest son can both bend their thumbs back down to their wrists, and although I have never heard of this being an issue for people with EDS etc they also have both broken bones from minor falls. My daughter has broken one of her arms in four places on four separate occasions. My youngest son fell in a park last year and snapped two bones in his fore arm and had to have a bog operation to repair it, which had a long recovery time. My other two children who look very alike have no problems, no hypermobility and no broken bones ever.
 

Mel9

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I was in one actually. A really extensive one about 10 years ago. THey found both twins seemed to have some metabolic problems I think.

This poll is showing high rates of CFS within families! Much higher than the few studies would lead us to believe.
I think this poll would tell us more if it was broadened to autism, cfs, fibro, ms, gwi, lyme, alzheimers (too tired to spell check) and even bipolar disorder. I wonder if we all have a common denominator that manifests itself in different ways? My family has lyme, autism, cfs, bipolar, adhd, ocd and tourettes. Yes...we are really screwed up. :)
 

Mel9

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Amazing, big families @ggingues I know my grandmother was a very happy, healthy lady all her life until she passed.

It seems whatever it is that causes this illness, it can take a strong healthy person down eventually. It took years to weaken me but when I did go down it was a rapid and frightening experience. I never knew one could feel so bad and for so long and everyday no seeming improvement. I think I was in a lot of shock for years at how ill I was and no help, trying to work it all out on my own.

I think antibiotic's messed me up in my 20's and triggered something in my immune system that eventually weakened me down the years. It was the flu that threw me into severe ME. That's as close as I can get to working out my case. but I could be wrong.
I answered nil members of family with cfs but there are two with bipolar
 
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No family members that I know of have been diagnosed with ME. However, there does seem to be an autoimmune theme in our family, Mother has psoriasis, and one of my brothers has Crohn's. My father had schizophrenia (I read some research recently that suggested an autoimmune link). Another brother possibly has BXO although no definite diagnosis yet. Sister has thyroid problems. Not a healthy family!

Oh meant to add, one of my nephews has hypermobility in some of his joints (I have this but only in my index fingers)
 

Maria1

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Interesting- my late brother had an undiagnosed psychotic disorder, most likely bipolar. I have a cousin with schizophrenia but no ME/CFS illnesses anywhere. I was thinking the other day about the energy surges and dips that go along with the mood cycles in bipolar.

I got no further than thinking with ME/CFS the energy is low (without the mood) before my brain gave out.
 

Mrs Sowester

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My mother has classic undiagnosed mild ME. I'm moderate. My daughter is mild at present.
Also my paternal uncle had ME in the 80s and has recently had a diagnosis of connective tissue disease.
 

Manganus

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For some reason, maybe cultural, fatigue is not what we tell each other, but rather debilitating and severe pain.

My great grandmother (i.e. my maternal grandmother's mother) got a progeny of thirteen reaching adult age.

Clearly nine of us thirteen seem similarly affected, although not diagnosed with ME, including immune system issues and/or psychiatric issues and/or connective tissue problems (like endometriosis, slipped discs, symphysis pubis dysfunction and semi-chronic tendinitis).

In our family, it seems like we suffer from a "weakness" that's inherited from our mothers (mitocondrias...?). The three that are offspring of her son seem healthier. (An other son took his own life at age 37, childless, and I know nothing more about him.)

Of us nine, three qualified for invalid pension, approximately at age 50, two left their professions and became house wifes in their 40:ies, and one was self-employed with a bed in the room beside the office, that was used many times each day.

(I my view, ME/CFS might be the "end result" or a final stage of all this, but what do I know?)
 

2Cor.12:9

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My kids were 2,8, (both girls) 10 (boy) when I got sick. Middle daughter was dx'd with ME/CFS in her 20's. Youngest daughter has had numerous other health issues (autoimunne) but no CFS. Son is healthy.
 

Sundancer

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Interesting- my late brother had an undiagnosed psychotic disorder, most likely bipolar. I have a cousin with schizophrenia but no ME/CFS illnesses anywhere. I was thinking the other day about the energy surges and dips that go along with the mood cycles in bipolar.
I could have written that, exactly the same.
No ME or severe fatigue in my family, (parents and sibs). But depression abounds, they are all affected with it.

I'm the youngest child, born to an elderly mum.

But my son has it, even though he has no diagnosis.
 
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Interesting- my late brother had an undiagnosed psychotic disorder, most likely bipolar. I have a cousin with schizophrenia but no ME/CFS illnesses anywhere. I was thinking the other day about the energy surges and dips that go along with the mood cycles in bipolar.

I got no further than thinking with ME/CFS the energy is low (without the mood) before my brain gave out.
Same here - 2 aunties with severe bipolar. One of whose son has recently become housebound with debilitating fatigue. Also both my brother and 3 cousins have aspergers - every one of them developed MECFS between 16-18!

EVERYONE in my family has had issues with orthostatic intolerance during youth. I have severe POTS and mild ME. I have had a constant headache for 4 years. My uncle had also had a treatment refractory disabling headache for years. He also continues to have very low blood pressure.

I've seen both Dr Chris O'callaghan and Dr Neil McGregor - both said they were convinced my condition was inherited.
 

lauluce

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I want to clarify my vote ("An immediate family member has mysterious fatigue but has not been diagnosed with ME/CFS")
On the same year when my ME/CFS worsened, my brother contracted an meticilyn-resistant Staphylococcus aureus infection on his skin, which was for a time also detectable on blood samples. At the same time, he started experiencing "fatigue, weakness and MEMORY LOSS and DIFFICULTY SPEAKING", the first two symptoms could well correspond to the infection itself, but the cognitive ones are definitely not normal symptoms of staph infections. The symptoms resolved completely on their own two years later, while I still have ME/CFS to this day, 17 years later. Any toughs about what happened to my brother? It is quite curious that being the brother of somebody with ME/CFS he developed ME/CFS like symptoms. Oh, forgot, his cognitive issues where of course diagnosed as symptoms of post-traumatic stress disorder resulting from his fear from dying due to his ongoing infection, fear and anxiety which he indeed had, but I don't buy that diagnosis at all
 
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The requirement for a diagnosis for this poll is laughable. Most doctors I've seen don't believe that CFS is even a real disease and all of them think my problem is in my head. That said, many of my family members, friends and colleagues have the same symptoms. My CFS is contagious.