The Family Member ME/CFS Prevalence Poll Take II

[Julia Rachel]

Hi Cort:

I am getting high numbers of reports through my Blog of parents with CFIDS who have Children with CFIDS. Also, the 70+ outbreaks of CFS recorded around the globe since the early 1930-s surely connects the dots to Infectious Disease. My guess is Saliva (EBV Transmission) using shared utensils (my sons' football team became infected after drinking from community shared water bottles at game breaks) and definitely Breast Milk Transmission is in play for mothers infecting babies. We have concrete scientific proof showing that HHV-6A has the capability to continually reactivate EBV. It does not look like a direct genetic transmission link, however a genetic pre-disposition plus a virulent trigger. Thus, the famial link via genes then environmental virulent trigger. I do not know what studies came up with the idea that this is not a family disease......I have too many letters from distraught parents who are ill with CFIDS as well as their children. This is insidious and needs to be addressed. Also, too many Military Personnel are becoming infected in group numbers after being in close contact, when no sexual contact was incurred. It seems to me that sexual transmission is a lower transmission mode. Just my Theory. Thank you for the Poll!

 

[Becky]

I have concerns about spreading this to my husband, since it feels like a virus. He's still healthy after 6 years of exposure. So I just wonder if my sleep disorder is a contributor to the spread of the virus, meaning I don't have the immunity he does. So although we may both have been exposed, I suffer the symptoms since I am not getting the restorative sleep. Interesting poll !

And I have a son who is bi-polar, a sister who suffers from depression (on medication) and breast cancer, an uncle who was schizophrenic (on medication later in life), mother anxiety.

 

[coxy]

Hi Cort:

I am getting high numbers of reports through my Blog of parents with CFIDS who have Children with CFIDS. Also, the 70+ outbreaks of CFS recorded around the globe since the early 1930-s surely connects the dots to Infectious Disease. My guess is Saliva (EBV Transmission) using shared utensils (my sons' football team became infected after drinking from community shared water bottles at game breaks) and definitely Breast Milk Transmission is in play for mothers infecting babies. We have concrete scientific proof showing that HHV-6A has the capability to continually reactivate EBV. It does not look like a direct genetic transmission link, however a genetic pre-disposition plus a virulent trigger. Thus, the famial link via genes then environmental virulent trigger. I do not know what studies came up with the idea that this is not a family disease......I have too many letters from distraught parents who are ill with CFIDS as well as their children. This is insidious and needs to be addressed. Also, too many Military Personnel are becoming infected in group numbers after being in close contact, when no sexual contact was incurred. It seems to me that sexual transmission is a lower transmission mode. Just my Theory. Thank you for the Poll!

Hi, would it be possible to read your blog, i'm very interested in this as we have 2 children with me/cfs (both aged 8yrs when they got it following different viruese), i actually became ill with me/cfs AFTER the children, our youngest 6yr old is also now with a paeditrician with similar symptoms, so far diagnosed with probable dyspraxia.

 

[Cort]

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?


Merry

Absolutely not! Did you know that a subset of people who come down with obsessive compulsive disorder do so immediately following an infection? They are fine - they have some sort of infectious incident - and then get OCD......That's viral onset OCD...

 

[Cort]

Hi Cort:

I am getting high numbers of reports through my Blog of parents with CFIDS who have Children with CFIDS. Also, the 70+ outbreaks of CFS recorded around the globe since the early 1930-s surely connects the dots to Infectious Disease. My guess is Saliva (EBV Transmission) using shared utensils (my sons' football team became infected after drinking from community shared water bottles at game breaks) and definitely Breast Milk Transmission is in play for mothers infecting babies. We have concrete scientific proof showing that HHV-6A has the capability to continually reactivate EBV. It does not look like a direct genetic transmission link, however a genetic pre-disposition plus a virulent trigger. Thus, the famial link via genes then environmental virulent trigger. I do not know what studies came up with the idea that this is not a family disease......I have too many letters from distraught parents who are ill with CFIDS as well as their children. This is insidious and needs to be addressed. Also, too many Military Personnel are becoming infected in group numbers after being in close contact, when no sexual contact was incurred. It seems to me that sexual transmission is a lower transmission mode. Just my Theory. Thank you for the Poll!

I think this poll suggests they need to do more studies!

 

[Cort]

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.

The patient data repository we we're working on is essentially a huge survey that will look at all of this. I like the neurotoxicity idea.

 

[Jenny]

FWIW - my husband has been on immuno-suppressant drugs for 2 years after having a liver transplant.

If ME was very infectious I would have thought he would be prime candidate to be infected by me. But (so far, touch wood) he's perfectly well.

Jenny

 

[bakercape]

transmission

Hi Cort:

I am getting high numbers of reports through my Blog of parents with CFIDS who have Children with CFIDS. Also, the 70+ outbreaks of CFS recorded around the globe since the early 1930-s surely connects the dots to Infectious Disease. My guess is Saliva (EBV Transmission) using shared utensils (my sons' football team became infected after drinking from community shared water bottles at game breaks) and definitely Breast Milk Transmission is in play for mothers infecting babies. We have concrete scientific proof showing that HHV-6A has the capability to continually reactivate EBV. It does not look like a direct genetic transmission link, however a genetic pre-disposition plus a virulent trigger. Thus, the famial link via genes then environmental virulent trigger. I do not know what studies came up with the idea that this is not a family disease......I have too many letters from distraught parents who are ill with CFIDS as well as their children. This is insidious and needs to be addressed. Also, too many Military Personnel are becoming infected in group numbers after being in close contact, when no sexual contact was incurred. It seems to me that sexual transmission is a lower transmission mode. Just my Theory. Thank you for the Poll!

I think from my experience your guess is correct. I believe the 5 people in my family who got cfids got it from saliva. We all got sick within a month of each other and although we did not all live in the same household we all ate meals, shared utensils/cups etc for the months , weeks and days prior to sudden viral onset.

Also my 2 children have high functioning autism with many CFS like symptoms especially in one of them.

 

[Merry]

transmission

Transmission from saliva seems likely to me also.

 

[hyl991]

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[lancelot]

FWIW - my husband has been on immuno-suppressant drugs for 2 years after having a liver transplant.

If ME was very infectious I would have thought he would be prime candidate to be infected by me. But (so far, touch wood) he's perfectly well.

Jenny

well, you can look at the other 2 known human retroviruses and the disease(s) they cause. HIV infection takes many years for it to cause disease(AIDS) while HTLV infection takes 20-30 years for it to cause disease(Adult T-cell leukemia, T-cell lymphoma, and chronic progressive myelopathy).

If XMRV/MLV's is the cause of infectious CFS/ME, it probably takes decades for this retrovirus to cause CFS/ME which is why this disease is mainly found in 40-50yr olds. We most likely contracted this retrovirus decade(s) ago.

 

[camas]

I'm trying to resurrect this thread to ask if anyone has come across quite distant relatives with ME/CFS or FM.

One of my hobbies is genealogy, and I recently ran into some distant cousins on Facebook. To our surprise we discovered that they have four generations of FM and possible ME/CFS, and my family has three.

Unbeknownst to each other, we had traced these illnesses back to first cousins -- my grandfather and their great grandmother who had never met. Our common ancestors (the grandparents of these first cousins) were born in the 1830s and died in the 1890s.

This could be completely coincidental, but we have to wonder if these diseases, or a strong genetic predisposition to them, could go back this far. Has anyone else had a similar discovery?

 

[Merry]

My father began to investigate the family tree in the late 70s, after he and my mother had been married for more than 25 years. He was surprised to discover that he and my mother were cousins. They each had a great-grandmother in the McIntire family, and these two women were first cousins.

My mother I don't remember as ever well. I'm sure my mother had ME/CFS, though she was never officially diagnosed. Her symptoms were more extreme than mine. I have talked about this elsewhere in the forums and possibly earlier on this thread. I forgot to check what I already said on this thread. Sorry.

In the early 2000s I read an article on Asperger's syndrome and realized that this was the explanation for my father's various eccentricities.

My parents did not know each other growing up but lived in adjoining counties, about twenty miles apart. They would've known people in common.

I have wondered about genetic predisposition.

I do have some evidence that my mother became ill with CFS around the early 40s. Did she infect my father? Or had he become autistic earlier - this possibility suggesting they were part of an outbreak?

My parents are both deceased.

On my mother's side of the family, a number of people have immune or neurological disorders. And cancer.

I know I can't get the answers to my questions, but I keep wondering.

 

[leaves]

I really think that the role of HERV (endogenous non infective retroviruses) will be shown to be huge here. I've the same in my family: can go at least 100yrs back with neuroimmune disorders.

 

[camas]

Thanks for your responses, Merry and leaves. I hope we have some answers soon.

leaves, it's interesting that you can trace neuroimmune disease back so far in your family too. HERV makes more sense than a lab-created retrovirus from the mid-90s or even mid-30s. These illnesses just seem to go back much further.

Merry, we also have Aspergers on my grandfather's line (my brother, a first cousin, and possibly a first cousin's son). I need to ask my new cousins if they have this in their line too.

The Civil War disability records of our common ancestor are quite interesting. Our grandfather fell ill with something infectious and spent a lot of time in a field hospital. When he didn't recover, my young grandmother (she was just 14 when they married) and their oldest son drove a team and wagon across three states to bring him home, but he was so ill they had to stop half-way and leave him in the care of strangers. She continued home to Wisconsin and then moved the family to him. What a woman.

He never fully recovered, although was well enough some years later to father three more sons. My new distant cousins and I descend from two of these younger sons. I'm beginning to think we need to do a family study.

 

[camas]

Hi.
My sister has ME which she got at 23, after a virus which affected her gut. I got ME/CFS at 26 but I am 7 years older than my sister so it was not at the same time and we were living in different towns then.

currer, your family story sounds similar to mine. My sister was just 14 when she fell ill with what they thought at the time was a virus in her brain (this was the mid-70s). She was bedbound for about nine months, but eventually recovered and remains about 90% functional to this day. I was away at college when this happened, but I fell ill two years later and eventually recovered enough to marry and work. Then in 1988 I had a terrible relapse after a flu and have never recovered. Even all these years later, the whole family collectively holds its breath every time my sis comes down with a cold or flu.

My brother showed signs of Aspergers from the time he was little. Although at the time they didn't know what it was and diagnosed him with a learning disability. He has immune issues too, but has never had a crash like my sister and me.

My mom's had symptoms of FM since she was in high school, but wasn't diagnosed until she was 50. She's never had a crash either. Her energy has always been pretty good despite her constant battle with pain.

My grandfather was 'sickly' from the time he was an infant. He had terrible allergies and chemical sensitivities and difficulty holding down a full time job because he just never felt well. Because of this my grandmother worked outside the home from the time my mom and her siblings were little. Although I suspect she would have done so anyway because she was the most driven and hardest working person I've ever known.

 

[Linksey]

Christopher,
Be sure to get a regular colon scope. I lost my husband from colon cancer ten years ago, he was only 36. I blame this virus on it. My son also has CFS, he is 17. I had him check for colon cancer when he was 15 and polops were found and removed. The doctor said we saved his life. I had to fight to get a doctor to give him one so young. They said he could get one ten years before his fathers was found. Which my son would be 24, he would have been dead from cancer if I had listened. Knowing you don't go by the "rules" with this illness "CFS", I knew to fight and the fighting is just begining.
Get checked!

 

[antares4141]

I should probably get one, ever since cfs onset 14 years ago I get these really sharp pains in the area of the colon. They last about 7 or 8 minutes and they are intense on the level of being kicked in the groan. But than they go away completely. They happen about 6 times a year I should keep track of it cause it's so strange. Lately I get woken up from a dead sleep with this pain it last's 7 minutes than I fall back to sleep. I don't have health ins and living off of savings still so I'm just going to have to take my chances till I am broke and can get insurance at a reasonable rate. Interesting link here states in the article that 5% of blood recipients go on to contract cfs.
http://niceguidelines.blogspot.com/2011/02/pace-trial-results-are-out-me-is-caused.html
You would think a statistic like that would get the attention of epidemiologist's. Also either this article or somewhere else on the website intimates the virus can be transmitted to monkeys. Just found it, haven't read over it well enough to see how they come to this conclusion or weather the site is reputable enough to take seriously. So many sites publish so much rubbish it takes a lot to convince me. One thing I like about main stream at least the things they do know are based on good science and scientific method, and peer reviewed literature from a respected institution. I have a love hate relationship with main stream, cause there seems to be one exception to this rule and that's when there is any liability involved, or ass covering to be done than they have all the integrity of a ferengi on deep space nine.
Robert Christ

 

[alexa]

It would be interesting with what some people are saying to have a poll of prevelance of autism, aspbergers and other autism spectrum disorders in our family tree if they are possible related ( as some believe that cfs is the female variant of autism)

 

[Mog]

I ticked "An immediate family member has mysterious fatigue but has not been diagnosed with ME/CFS" although it was actually referring to my maternal grandmother who died in 1990, which was 3 years before I came down with CFS, so I presume genetic predisposition in our case. It is only in retrospect, obviously, that I made the link. She suffered general ill-health from age 40 until her death in her early 80s, starting from a major bowel operation. But she had fatigue, unidentified muscle pains, malaise, probably ME symptoms. I have to say she got more medical attention from the NHS for her problems back then than I have ever done for mine. They did at least investigate her and try to help. So much for progress. My mother has just been diagnosed with Parkinsons at age 74. My best friend at the time I fell ill had had ME for about a year before me, after getting a stomach bug in Turkey, so I wonder if I contracted it from her? I used to think it was a coincidence that we both had it, but maybe not.