The Family Member ME/CFS Prevalence Poll Take II

[John H Wolfe]

The link with heredity is an interesting/tragic one. I know of people whose children also have ME/CFS, so sad

My maternal great grandmother had pernicious anaemia (gastrointestinal link). My sister has anaemia. I have large/distorted red blood cells (akin to megaloblastic anaemia - pernicious anaemia is linked to this)

My maternal grandfather had coeliac disease and circulatory problems (I have idiopathic gluten sensitivity and OI)

My maternal aunt has chronic asthma (I have only experienced this in conjunction with hay fever) and chronic fatigue (I have never discussed her health with her too directly, although I have lent her some literature, so I don't know whether it is ME/CFS as such but from the anecdotal evidence it seems she has many of the hallmarks)

My father has joints that click and has had problems with shoulder, knees and ankle (my joints click too and I have a mis-shapen spine; some have linked ME/CFS to hypermobility of joints and a 'flexibility' of certain vessels, as well as dorsal abnormalities)

 

[Mog]

Coincidentally, my maternal grandmother (who I think had ME and who I presume I have inherited it from) also had pernicious anaemia, also following on from gastrointestinal problems following surgery. She got B12 injections for it. I actually think she got better treatment and more investigations for her problems on the NHS in the 1930s - 1970s, than I ever have had in more recent times. The doctors at least seemed to listen to her and try to find out what was wrong with her and try to give her some treatment.

 

[John H Wolfe]

Coincidentally, my maternal grandmother (who I think had ME and who I presume I have inherited it from) also had pernicious anaemia

Interesting. I realised (relatively recently) that I was not helping myself by diluting my stomach acid at meal times with my eating/drinking habits, is this something you watch out for too given the potential heredity link? Have you tried to gauge/measure your gastric acid, or tried any related supps?

The doctors at least seemed to listen to her and try to find out what was wrong with her and try to give her some treatment

I know what you mean, although I do have some sympathy for GPs, in the age of armchair 'experts' (like me, haha), who self/google diagnose to the nth degree - there's so much strain on resources in the NHS, I sometimes wonder whether it will last.. in that sense I count myself lucky, imagine trying to get things investigated/treated in countries with private healthcare is an absolute nightmare

My old man focused on B12 quite intensely for a little while (in the days before I took much of an interest in researching my own illness). My serum level has been pretty reasonable in the main and I've tried pills and patches with no effect, but I understand that at least some PWME may have utilisation difficulties almost irrespective of intake/serum levels e.g. the methylation - glutathione - free radical - B12 busting connection

 

[Allyson]

T

CFS is quite rampant in our family - my mother - her brother and two sisters all suffer debilitating CFS/ME - and interesting to note the 5th sibling is fit and healthy actually lives in a different county - makes me wonder about transmission?
I suffer from it as does my sister and we have 2 cousins that are looking very suspect too. So 6 definitely and another 2 maybe.

Hey Tembo,

have you ruled out /checked out EDS then - it has almost identical symptoms to ME but is genetic so it may apply to you

symptom list to check it out here and if you are in Aus I can point you towards good docs to diagnose it.

http://forum.notcrazy.net/index.php?topic=9571.msg133330

Genetic testing for type 3 will be available in the next couple of years so many people are seeing geneticists now for family reasons if no cure available yet - it needs to be a knowledgeable doc tho - many know nothing about it.

CHeers

Ally

 

[rosie26]

I come from a huge extended family, my mother was one of 10 children. No one has ME except me. I come from strong healthy genes on both sides. What happened ?

 

[unto]

hello to you all,sorry if I write bad, I have to translate from google .I am convinced that ME is a disease of viral origin ;I think many people have contracted directly or indirectly by myselfME , all my family ( 3 people) then a few older women , other relatives ( uncles and cousins) ,some friends / girlfriends.just me (I think) I was diagnosed (excluding ) CFS , but the behavior of these dear people ( most careful to protect head and ears and neck from the cold with a scarf and hat ) the expression of their faces ( more weary sad - , with dark circles , eye licidi ) their complaints about the difficulty of digesting , for joint pain, headaches, etc. Fedde .exclude the doubt.
The history of the disease is unclear ( confused by psychiatrists , doctors and surface from us sick ) , ME is most often appeared in the form of small local outbreaks and it is more common to find people who are sick in the same environment (family, friends , work) .
of course it should be an unknown virus ........ I had so much hope when there was talk of XMRV ;or first stealth virus discovered by dr. John Martin ;heredity , genetics , environment, food , etc. . I think I may be the only aggravating the disease is notcertainly the cause.a warm greeting and good nightin Italy are almost three

 

[leela]

welcome the the forums, unto, thank you for sharing your story... e dormi bene sta notte.

 

[unto]

thanks Leela, I slept a little 'worse than usual .....
a question: this discussion was opened by Cort (the founder of the site),
I read that Cort has come out or gone ..... what does this mean? can explain
thanks

 

[leela]

hi unto, you can find cort's new efforts at Health Rising here .

 

[unto]

many thanks Leela,
today I'm in such a hurry.
hello

 

[kauri]

My family is myself and 4 adult children. Only my youngest son (7 years old then), and I lived together when we both became sick. We both came down with a flu-like illness within about a week of each other, and took several years to deteriorate to the point of having to stop work and school. None of the other three kids, who live far away, have any fatiguing illness. Because of this pattern, I'm convinced an infectious illness triggered our condition, which keeps us still mostly bed-bound 22 years later.

 

[SOC]

My family is myself and 4 adult children. Only my youngest son (7 years old then), and I lived together when we both became sick. We both came down with a flu-like illness within about a week of each other, and took several years to deteriorate to the point of having to stop work and school. None of the other three kids, who live far away, have any fatiguing illness. Because of this pattern, I'm convinced an infectious illness triggered our condition, which keeps us still mostly bed-bound 22 years later.

Interesting. We have a similar pattern. Daughter and I came down with a flu-like illness with identical symptoms within a week of each other and took several years to deteriorate to the point of having to stop work. I am completely convinced we have an infectious trigger, but currently have no certainty about whether the infection is on-going or hit-and-run. I'm inclined to think on-going, but solid evidence is lacking.

If you're interested, PM me and we can compare diagnosed infections and symptoms. Maybe we can find a common culprit. Or at least share treatments that are helping.

 

[unto]

sorry I had not seen your answers ......, my belief (thirty years of ME / CFS) is that ME is always active and can be transmitted even after
many years after the onset, in fact I have seen people in health after attending
my house you are sick of ME / CFS, this happened 15 years after the onset of illness in myself.

 

[MEG]

my mother had cfs, I have it , my son has it and now my precious four year old grand-daughter has fibro, but we are not convinced it isn't ME

 

[unto]

my mother had cfs, I have it , my son has it and now my precious four year old grand-daughter has fibro, but we are not convinced it isn't ME

I am convinced that the "disease " is the ME which then manifests : CFS , FM , MCS, GWS ,according to the characteristics of the patient ( which and how many infections have previously experienced , genetic features , the environment where it lives , how it feeds .......... ) , I also think that the percentage of people who contract the infection is now in integers between 3 and 5% , but the majority does not go beyondthe primary care physician, resting more, satisfied with a drug to sleep, is more attentive to the cold , it makes a balanced diet ....... perhaps in the 1990s in the U.S. had a lot of young people with ME / CFS light and besides the love for the homeland also enlisted to go places by the " warm " (thinking that this was an easy war ) but they had to take drugs , vaccines do , eat bad, drugs, explosives and contact exposure to various substances chemicals , stress, fear ....... all this probably blew ME mild in GWS.

 

[unto]

time ago I put in post my thoughts on the overall behavior of the sickthat feeds the confusion about the origin of ME ....

 

[unto]

http://forums.phoenixrising.me/index.php?threads/boring-self-indulgent-story.2371/

sorry I can not with copy-paste

 

[Allyson]

I come from a huge extended family, my mother was one of 10 children. No one has ME except me. I come from strong healthy genes on both sides. What happened ?

luck of the draw Rosie? Genes can be like that winners and losers

Ally

 

[*GG*]

I come from a huge extended family, my mother was one of 10 children. No one has ME except me. I come from strong healthy genes on both sides. What happened ?

My mother is one of 19 children, most were healthy, and my father was one of 13 children. He had a couple of brothers that had issues. But doesn't much of what you are come from your mother, because of the egg? I am male, by the way. I wonder what happened to me also? Was it flu shots that I started getting in the late 90s and early 2000's?

After being stuck at home with the flu for a week one winter! One winter when I got the flu shot, I would go home and crash after work for the whole night, would just sleep thru the night and get up for work the following morning, perhaps this indicates something?

Exposure mercury via my teeth, only a few fillings, but with other toxins (lead and from food) in my body and the stress of my Mono, perhaps that was enough to put me over the edge? Perhaps not the best diet, I would eat some garbage food because I would bike for an hour and figured I would burn about 1,000 calories then, so I could eat junk food. Although perhaps I should have been eating more healthy to compensate for the demand I was putting on my body?

gg

 

[rosie26]

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.