FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

[taniaaust1]

Hi Shelley

I can partially relate. I had measles when I was seven, and then measles encephalitis (hey, thats also ME!). My GP was worried that I would get meningitis but I wasn't hospitalized, and was unconscious for over a week, except for a few minutes every now and then that I could be woken up. I have never been right since (this was in 1968), I was chronically tired with other CFS like symptoms appearing in my teens. In my twenties it cranked up from mild to moderate, then in 1985 I had a year with one flu after another, all year long. From 1992 I was on a downhill slide which reached its nadir in 96 and 97. Then I slowly started to recover.

I think measles, like hep B, may be a special case in terms of risk factor for developing CFS - both the disease and the vaccine are risky.

If your immune system was already primed by measles, and you had another vaccine, you could have had an unusually severe immune response. We know from the Dubbo study that this is a major risk factor for triggering CFS. XMRV would also love it. What you describe is not surprising to me.

Bye
Alex

I had measles too when very young. i dont know if more of us had had measles or not cause i guess it was more common back then.... (I'd like too see a study)

 

[floydguy]

Measles - Shelley & Alex

Hi Shelley

I can partially relate. I had measles when I was seven, and then measles encephalitis (hey, thats also ME!). My GP was worried that I would get meningitis but I wasn't hospitalized, and was unconscious for over a week, except for a few minutes every now and then that I could be woken up. I have never been right since (this was in 1968), I was chronically tired with other CFS like symptoms appearing in my teens. In my twenties it cranked up from mild to moderate, then in 1985 I had a year with one flu after another, all year long. From 1992 I was on a downhill slide which reached its nadir in 96 and 97. Then I slowly started to recover.

I think measles, like hep B, may be a special case in terms of risk factor for developing CFS - both the disease and the vaccine are risky.

If your immune system was already primed by measles, and you had another vaccine, you could have had an unusually severe immune response. We know from the Dubbo study that this is a major risk factor for triggering CFS. XMRV would also love it. What you describe is not surprising to me.

Bye
Alex

I have an interest in measles as well. My grandmother got the measles when nursing my mother. When I got the measles vaccine I promptly GOT the measles. I also got a terrible case of the chicken pox and then shingles and finally a "mono" like illness in high school. Back then I tested positive for EBV and Hepatitis B. Now I test positive for HHV-6. I feel there is a connection...

 

[Cloud]

When I was a kid, we all had those "childhood diseases"....measles, mumps, whooping cough, chickenpox, etc. It was normal and, I don't recall anyone, including myself, having some kind of ongoing lingering problem after having those illnesses. But for some reason, now people are staying sick after these illnesses and vaccines. I'm pretty certain my only childhood vaccine was Polio. I had ME/CFS triggered by the Hep B vaccine as an adult.

Vaccines for an already existing disease, or even having only the antibodies, sounds like playing with fire to me. The "shingles" vaccine has become very popular. I have done zero research on this but it seems odd to me to use a vaccine to hit a virus (Herpes Zoster) that is known as impossible to clear from ones system.

 

[VillageLife]

2 weeks ago....I rang my areas immunization department requesting the dates of a particular vaccine I had!
Firstly the date they gave me was a Saturday, So I told them It couldnt of been a Saturday as I had the vaccine at school. Then they said sorry that was a guess date!!
I rang back about 3 times telling them to forget the computer and demanded they go find the *paper document* with the date on, they said it was in a warehouse.
2 hours later they rang up and said sorry it was destroyed in a fire at the warehouse and all the files were burnt. They told me most of the kids born in the 80s of my area had been lost in the fire!

 

[muffin]

Shelly (Seashel) speaks my mind on vaccines. Guardasil in particular. For now.

alex, the rushing a vaccine thing is one of my bigger fears. I feel that an unnecessary measles vaccine triggered me from something resembling remission to full blown never-return-to-work-or-semblance-of-former-life state of being.

If it bears out that some (im)perfect storm of genetics-xmrv-triggering event is the cause of me/cfs (and fibro, autism, prostate cancer, etc etc), another vaccine could create a whole 'nother problem.

I just hate the 'a vaccine is the cure to everything' approach. every time i see a guardasil commercial, i yell at the tv.shelley

(didn't many of us scream when we first saw this vaccine come out and get pushed on young girls?? I did. Instructed my sister, who also agreed, that my niece would not be getting this vaccine. Pushing a vaccine on very young girls who won't be having sex for quite a long time? Or in my niece's case anyway.
Also,not a fan of the seasonal flu either. Family always gets deathly ill sick after these.))))

 

[moonchild]

the one i've wondered about is rubella...seem to be a lot of girls who develop CFS around the time of puberty and while that could be because of the hormonal changes or additional stresses on the body i also wonder about the link of a vaccine that is given about that time. tried to find out a few years ago when exactly i was given it but apparently the surgery doesn't have that info any more and certainly wasn't very helpful about trying to find out any more for me. would love to know, to satisfy my curiousity, whether i had this before or after my first episode.

 

[moonchild]

PS - and guardasil...have the same misgivings about this as many other people are expressing. especially as i believe it only covers one strain of the virus anyway? and i really wish the medical professionals wouldn't be so glib about dismissing reports of reactions to these things (teenage girls...you know what they're like, probably just being melodramatic - arghhhhhhh!!!!)

 

[anne_likes_red]

moonchild, I had my Rubella shot in NZ in my last year of primary school. I'd just turned 11* and I developed ME 5 years later (after hospital treatment for toxoplasmosis).
*I was 2 years ahead academically so the rest of the girls in my class were 12 1/2 - 13'ish at the time we received our rubella shots. It was only given to girls....this was early 80's. I'm guessing our countries would have had a similar vaccination program.
HTH

the one i've wondered about is rubella...seem to be a lot of girls who develop CFS around the time of puberty and while that could be because of the hormonal changes or additional stresses on the body i also wonder about the link of a vaccine that is given about that time. tried to find out a few years ago when exactly i was given it but apparently the surgery doesn't have that info any more and certainly wasn't very helpful about trying to find out any more for me. would love to know, to satisfy my curiousity, whether i had this before or after my first episode.

 

[moonchild]

moonchild, I had my Rubella shot in NZ in my last year of primary school. I'd just turned 11* and I developed ME 5 years later (after hospital treatment for toxoplasmosis).
*I was 2 years ahead academically so the rest of the girls in my class were 12 1/2 - 13'ish at the time we received our rubella shots. It was only given to girls....this was early 80's. I'm guessing our countries would have had a similar vaccination program.
HTH

hi anna (?)

lovely to see someone else on here from my side of the world (and in particular my favourite country in the world). i know that we were supposed to have it around the time we began menstruating...i think we had the choice though of having it done at school or by our family GP. i wanted to put it off as long as possible so went with the family dr ( hope my memory is serving me correctly here!). my first period was in the break before high school started and it was october that year that i had the first episode of CFS, somewhere in the middle there i had the MMR vaccine...

 

[usedtobeperkytina]

Guardisil

I don't understand the vaccine for HPV. I mean, pap smears catch most abnormal cells long before they become cancerous. Even if they find an abnormal, they tell you to wait six months and get tested again. I mean, it grow so slowly. And the vaccine doesn't mean you will not get cancer, from that virus.

I think the pap smear method seems to be working. I am sure some women still get cancer and some die. But I would think a lot of that is from not getting pap smears.

Correct me if I am wrong.

And by the way, you know there was a bill in Texas to make the vaccine mandatory. When the bill wasn't getting support, the governor made a declaration making it mandatory: http://www.msnbc.msn.com/id/16948093/from/RS.4/

Tina

 

[moonchild]

I don't understand the vaccine for HPV. I mean, pap smears catch most abnormal cells long before they become cancerous. Even if they find an abnormal, they tell you to wait six months and get tested again. I mean, it grow so slowly. And the vaccine doesn't mean you will not get cancer, from that virus.

I think the pap smear method seems to be working. I am sure some women still get cancer and some die. But I would think a lot of that is from not getting pap smears.

Correct me if I am wrong.

And by the way, you know there was a bill in Texas to make the vaccine mandatory. When the bill wasn't getting support, the governor made a declaration making it mandatory: http://www.msnbc.msn.com/id/16948093/from/RS.4/

Tina

wow - mandatory vaccination...i find that SCARY. (was the governor male by any chance?)

 

[ixchelkali]

I had the measles as a child. My mom wrote all my childhood illnesses on my birth certificate. I remember having them. When I was pregnant with my only child, I was told I did not have the antibodies.

That's interesting. I had German measles/rubella at least twice. I had it as a baby when my sisters got it. Then when I was 19 I got it again, while I was in the hospital having my appendix out. Because they were afraid the rash could be an allergic reaction to medication, they tested me to make sure. There was also another time as a kid when I got a rash during a German measles epidemic, but my folks figured it couldn't be German measles, because I'd already had them; in retrospect, I wonder.

After the rubella vaccine was developed I asked my doctor if I should get it, and he told me no, that if I didn't develop immunity when I had the disease, I wouldn't develop immunity from a vaccine, and to just stay away from people with German measles.

I always just thought it was an oddity of my immune system. Since I got ME/CFS, I've thought about that and some other immune system oddities I had while I was still healthy. I've wondered if there was something slightly out of kilter about my immune system to start with, maybe some genetic glitch.

It will certainly be interesting to see what they find out about the pathogenicity of XMRV. I wonder if there are some kind of immune differences between those who get sick with it and those who don't. Or if genetic differences could make a difference in the way the disease manifests itself.

 

[Mithriel]

I got ME at fourteen before any of these vaccines were given.

Without a diagnostic test being done it is not possible to tell exactly what disease you have when you get a rash as a child. That is why blood is tested when you are pregnant rather than relying on memory.

Measles is a nasty bug, that is why the measles vaccine is not so good too.

When I got measles in the fifties, I was kept in a dark room and my father made cardboard eye shades. The after effects of measles can be nasty even if you don't go on to get the encephalitis. I have friends who were left deaf and vision impaired after measles.

When my children were young there was a measles epidemic here. The ones who were vaccinated were still very ill but the unvaccinated were hospitalised. There were so many children admitted they had to put beds in the corridors.

Mithriel

 

[SunnyGal]

I received a measles vaccine as a baby/kid that was found to be ineffective, so I was re-vaccinated (sweet liquid squirt into my mouth) when I was about 8-10 years old (I'll have to check with my mom to see if she remembers exactly). I started showing CFS symptoms around age 9 or 10. But, I was also bit by a tick around age 9 or 10. Who knows when or where I got XMRV. Hard to say what any trigger of my illness was.

Sunny

 

[Cloud]

IMO, I would not be at all surprised to see mandatory mass vaccination laws at some point. That idea does not rattle the boundaries of my conspiratorial thinking in the least. I doubt such laws would have anything to do with the gender of the politicians, but everything to do with Big Pharma's bottom line.

 

[MaryAnn]

Tina you are correct that women that receive annual paps, and are able to get tx if needed. The cervix is like the liver; it can be cut and grow back. I think I read that in approximately 70% of HPV cases the immume system is able to take of by itself anyway. Guardasil is given in 3 separate shots and now they aer learning that it is only effective for 5-7 years not a lifetime. If a young girl (age 10) gets the vaccine then by the time that most would begin having sex, they would not be protected. This is a way to make money and without recourse since (unlike medications) big Pharma is protected by regulations against lawsuits. The childhood vaccination program has very strict guidelines for anyone even wanting to sue, e.g. seizures and hospitalization which must be supported by medical pratitioner(s).rr

 

[jspotila]

I'm not an expert on HPV, of course, but let's remember two things: 1) not all girls become sexually active by choice (or with forethought for that matter) so vaccination at a young age is not completely unreasonable; and 2) the vast majority of women in the world do not have access to annual pap smears (as well as uninsured women in the US) but a vaccine program could be one way to address HPV infection in such populations. And a vaccine to prevent cancer? Probably sounds good to more people than just pharma companies.

 

[jimbob]

9,582 days since acute onset! We need official release soon or I'm gonna totally loose it! Need this to break big so we can get massive efforts focused on xmrv!

 

[bullybeef]

The issue is, from an international point of view, a CDC positive paper would much more of a media pull, then a NIH/FDA one. Particularly in the UK anyway. I didn't know of the NIH or the FDA before last year.

However, I would so much like to be proven wrong on this.

 

[jimbob]

FDA and NIH are huge here, we'll be just fine with them announcing. Anyway CDC is starting to get a bad rep"