The Family Member ME/CFS Prevalence Poll Take II

[Merry]

Cort, I wasn't sure how to fill out the poll so didn't.

My mother, who died in 1997, I'm sure had ME/CFS. She had the same symptoms as mine, even more severe. When I got my diagnosis in 1990, she finally had for herself an explanation of her decades of poor health. For her to have received an official diagnosis, from a doctor, she would have had to pay the medical expenses out of her own pocket and traveled some distance.

Years before I knew about CFS I assumed my mother had given me a virus.

Some years ago I heard that a first cousin once removed of my mother's had been diagnosed with CFS as well as the young woman's father, a non-blood relative. More recently I heard that a great-niece of my mother's has been diagnosed with Fibromyalgia as has her father, also a non-blood relative. These are not people my mother or I have had close contact with.

One of the life-threatening illnesses my mother had in her last years was myleodisplasia (sp?), a pre-leukemia. She was told that the condition was rare. And yet a few years after her death, the father of her daughter-in-law was diagnosed with the same condition and didn't live long. This man, though not a blood relative, was someone my family had for twenty years close contact with. The two families were connected by marriage, lived a mile apart, attended the same church, and often shared meals.

Then a few years after this man's death I heard that one of his daughters (not my sister-in-law) had been diagnosed with CFS.

I could also talk about autism in the family, but you asked only about fatiguing illnesses in your poll. And I've already gone on at length. Sorry. Questions about spread of illness go around and around in my head.

Merry

 

[Melodie]

I dont think it is genetic but that there is vertical transmission mostly

Interesting, what kind of transmission?

 

[taniaaust1]

Im wondering if there is a way to change ones own poll vote? I thought my sister who has been sick for about a year and who i thought may of had possibly CFS starting to affect her, had found the cause of her illness so didnt put any immediate family members down.. but it turns out she hasnt and it could still be the start of CFS.

So I currently just had my cousin down.. but should have sister there too, due to at this point it is becoming likely its been CFS affecting her over past year.. (tires very easily and is struggling some even thou she isnt working (thou she is home with the kids), her partner does most of the housework, sensitive to chemicals, throat symptoms, bowel symptoms).

 

[Sunshine]

What a great poll and rather telling figures it reveals. Thank you for making this for us all and giving an opportunity to share experiences.

From this poll data, it seems to be a majority of people with CFS who remain convinced they never gave their partner CFS, with a small number reporting the opposite.
This directly correlates with what the average person with CFS reports on forums and chat rooms.

As others have commented here, it appears intimate partners of those with CFS may well be infected by others with CFS via intimacy, although far lower than HIV. XMRV could lay dormant due to many factors that need to trigger it, including genetics that maybe are unique to those who develop CFS from XMRV infection.

CFS is the symptoms of disease and XMRV is the virus. If we can have XMRV and be 'healthy' then it's more than possible XMRV is sexually transmitted just like HIV. How would we actually find this out? Phone up our ex boyfriends who now hate us and ask sweetly if they'll pop along for a blood test in 2012?

A very difficult situation indeed for all concerned, especially due to stress and emotions involved in contacting people we really don't want to. Which all helps the CDC to be able to state that CFS is certainly not from an infectious agent like XMRV, but a form of hysteria caused by social distress.

There is masses of room in CFS and XMRV research for lots of exciting studies to educate us all.

 

[*GG*]

I don't understand what you're trying to say. Can you rephrase or elaborate what you mean? What 10 words are you referring to? What are you yada-yada-ing? Lost, sorry.

Done, look back. sorry for any confusion, just had to type so many words so I could post that I have participated.

 

[BEG]

I voted. It seems to me there is something hereditary about this disease. But that doesn't seem to explain outbreaks now, does it?

 

[urbantravels]

Genetic susceptibility certainly could. No epidemic ever makes 100% of the people who get the virus sick.

What we don't know is how many people might have gotten [pathogen x] and either never suffered symptoms or just got a bit sick, recovered, and then never thought anything more about it...but remained capable of spreading it.

 

[Mya Symons]

In my husband's family this disease seems to be contagious, but not in mine. Me, my husband, my son, 2 sister-in-laws (on husband's side) and 2 brother-in-laws (on husband's side) have been diagnosed with either CFS or FMS and in some cases, both (by different doctors). I wonder why that is? Is it heridity or is it that all the people listed just happened to pick it up at a time that it was contagious? Perhaps we shared a drink or some such thing?

My daughter has a different father and so far she does not have either illness. When I was told my illness was psychosomatic (from PTSD) by more then one doctor, I believed them. I am pretty sure that my daughter and I have shared food. Still, she is not sick.

 

[Rafael]

This is a very useful poll result.

I suggest we share results and BRIEF description of method to a number of advocacy groups and researchers.

I don't think there's any need for us to explain/theorize on WHY the results are as they are.
If any group is interested they can follow up with their own science.

I think we COULD make the result even stronger = more intriguing if we did a "Take 3" that
a) incorporated some of the suggestions in this thread (e.g. multiple family members)
b) made sure that a RANDOM sampling of board members completed the survey => to eliminate any potential bias of people with other ill family members being drawn to this thread topic & then completing survey itself.

p.s. I would love to know what our XMRV+ survey shows so far on this matter

 

[Jackie7105]

Family Prevalence of CFS

My mother and two sisters all have symptoms of CFS or fibromyalgia. My mother is now deceased having lived to age 87 but was afflicted with many symptoms until then. I have had symptoms all my life. My husband recently completed treatment for chronic lymphocytic leukemia, and when I asked his doctor at MD Anderson in Houston (best in the world-developer of the treatment of choice) if he could have gotten it from me because I have CFS and because of the XMRV news, he said "yes."

 

[Rafael]

he said "yes."

I had to read the last part 5 times. I SO expected to read "No - of course not" .

 

[taniaaust1]

CFS is the symptoms of disease and XMRV is the virus. If we can have XMRV and be 'healthy' then it's more than possible XMRV is sexually transmitted just like HIV. How would we actually find this out? Phone up our ex boyfriends who now hate us and ask sweetly if they'll pop along for a blood test in 2012?

A very difficult situation indeed for all concerned, especially due to stress and emotions involved in contacting people we really don't want to. Which all helps the CDC to be able to state that CFS is certainly not from an infectious agent like XMRV, but a form of hysteria caused by social distress.
.

umm i never thought of it from that aspect. It could end up like a STD in which we are asked to contact those we may of infected (just like AIDS cases).

The other week, I had out of the blue an ex of mine suddenly show up (he needed my help with something to do with the past). This person I dated 15 years ago while in my early 20s (so a couple of years before i got CFS/ME but im suspecting it could of been dormant since childhood). When i asked him if anything interesting had happened to him over the years... he told me he had gotten a cancer several years ago and had to have it removed. (he said it was in his leg, so i dont know what kind of cancer that is).

I doubt if it was due to me.. but still who knows.

 

[*GG*]

umm i never thought of it from that aspect. It could end up like a STD in which we are asked to contact those we may of infected (just like AIDS cases).
I doubt if it was due to me.. but still who knows.

I have thought of this, I am awaiting results from my blood draw for XMRV and I was told more testing due to the paper coming out. I could count the number of sexual partners I have had before becoming ill on 1 hand! The hand is always safe, so that was my method of choice.

I was very hesitant to become sexually active because I was afraid of HIV/AIDS! Go figure!!

 

[ukxmrv]

I am XMRV+. My sister was diagnosed with CFS. I've just heard that her ex-boyfriend is now searching for the reason for the "mysterious" fatiguing illness he has. I've not been able to speak to him as yet. Their relationship ended over 10 years ago and before she developed CFS.

 

[Tammie]

ooops- I accidentally voted incorrectly.....I hit the last one & I should have voted that a cousin has a mysterious fatiguing illness but no diagnosis.....don't know how to fix this

 

[Sunshine]

Infectious retroviruses tend to infect babies and harm them, as we are finding out to our cost as 'CFS' patients with XMRV+ test results. We aren't patients, but victims of a conspiracy still in place.

10 years ago, it was laughable that people would (in general) say their 'CFS' was in the family and passed on my mom. Yet, as people exchange information via the internet and ignore the CDC's spin......
The truth comes out.

Of course 'CFS' that causes neuro immune dysfunction is infectious and transmittable. Get an XMRV culture test at VIPDX/WPI and you can see for yourself if the result is positive, your own blood infects a previously non XMRV+ cell from your own body! There's the proof of cell to cell transmission and the fact XMRV is infectious, you don't need no 'positive study' to confirm that.

Couple this with the evidence from this poll and the penny drops. Except, the CDC can't hear it..........they're theorizing on low cortisol, child abuse and 'stress'. Which was all done in the 1980's in the UK by psychiatrists in ME/PVFS.....

More people need to get tested as soon as possible. When VIPDX/WPI has 10,000+ samples from 'CFS' patients, rather than 1,000 that's the next milestone. Open more labs, we'll have 30,000 XMRV+ in the USA. Then 100,000+, then 1,000,000. Give it 3-5 years and figures will come out, globally. Except we haven't got 5 years......

 

[leela]

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.

Yes...I'd like to see a broadened poll too, as I have blood relatives with cancer, diabetes, autism, bipolar disorder, MS, and some weird undiagnosed neorological condition that looks like a variation of tourette's. I think we're looking at a congenital predisposition for neurotoxocity or something like that.

 

[JAXintheCity]

My sister has diagnosed ME/CFS, too (with reactivated titers of EBV, etc.) For a while she was treated with Valtrex, but it didn't help. She was diagnosed two years after me, and thankfully, she's never been as disabled as me.

My mother has fatigue issues -- but she has so many other problems, she cannot get a diagnoses of ME/CFS. (IE., sleep apnea, blood pressure issues, cancer, etc).

It's nice to have a sister who has ME/CFS, though. I remember one night laughing with her about how of the two movie theatres in her neighborhood, she can't possibly get the energy to drive to the one 10-minutes away. I told her to count her blessings -- the only movies I see are the ones on On-Demand (IE., from the couch!)

Though, I wouldn't wish this disease on my worst enemy. It's really hard to see her on 'the bad days' ...

 

[Christopher]

I voted for an immediate family member experiencing mysterious fatigue, even though neither my father nor my mother actually experienced/experiences fatigue in the CFS sense. I voted this way as my mother has always had anxiety, panic attacks, and seems stuck in fight or flight mode constantly. Very emotional person and gets influenced easily by other people's emotions and cannot deal with stress at all. These are all symptoms I get when my CFS is particularly bad.

As for my father, I can't say for certain, but I'm almost sure he had autistic/Asperger's tendencies. It was at least severe depression, but he had sleeping issues and serious communication issues. When my CFS is rather bad it's extremely difficult to communicate with anyone and I feel exactly what I think my father was dealing with. He was also diagnosed with Stage 4 rectal cancer(not prostate cancer but pretty damn close) in 2004 and passed 4 years later. No family history of cancer and he was 54 at the time.

It's all speculation but when my CFS is bad, and only then, do I pick up both my parents' unusual behavioral tendencies. When it's less severe it's still there, but I've learned to control them.

EDIT: I also want to add some interesting personal family history on my mother's side. I don't want to get into the details, but my mother and her siblings experienced a great deal of childhood trauma growing up caused by abuse dealt by their father. Not only did my mother's father do this quite regularly, but his 2 brothers behaved similarly, all in different parts of the country and without learning this behavior from their mother or father. I don't know for sure if any of this means anything, but I find it plausible that an infectious agent in part caused these actions by inducing the fits of rage/sadness that is now in its 3rd generation.

 

[Merry]

Christopher,

I've been wondering some of the same things about family members as you have. Possible autism spectrum disorders. People with bad tempers - really unpredictable outbursts. In despair over bad behavior, I finally got to the point of thinking of them as brain-damaged. And is that really so far-fetched that if I have a neuro-immune disorder, CFS, that may be caused by a virus, couldn't other family members have been infected by the same virus but harmed in a rather different way?

I'm sorry to hear of your family problems and of your father's death of cancer at such a young age. What a time you've had, Christopher.

Merry