It has been posted on the facebook site that they are all there till November 9th. The xmrv virus has caused quite a stir.
Hopefully they will have something good to report. That is a good combination of people.
For our cause.

I am quoting what the daughter on facebook said.

[This Message was Edited on 11/03/2009]

Keep the info coming. Kina.

hensue, there is a lot wrong with your title.

I would suggest changes but I am not sure how to gauge your level of brain fog : )


Annette Whittemore, Dr. Daniel Peterson and ???


Anyway, just thought I would point that out. It is a little confusing.


As for Facebook : http://www.facebook.com/pages/Whittemore-Peterson-Institute/154801179671?ref=search&sid=1497459322.2276408089..1#/pages/Whittemore-Peterson-Institute/154801179671?v=wall&ref=search


That link is huge, I could not find a shorter one. Let me know if it does not work.

If that link fails, just sign-up on Facebook and do a search for Whittemore Peterson Institute, it will be right there.


[This Message was Edited on 11/03/2009]

Annette Peterson and her husband scientist and Dr. Mikovitz at capital hill

That has so many errors, I don't know where to begin.


Annette Whittemore is not married to Dr. Daniel Peterson, as your poorly written title implies.

Mr. and Mrs. Peterson, heads of Whittemore Peterson Institute ? What the Hell does Mrs. Peterson have to do with this ?


Sentence structure and grammar would have avoided that confusion.


It confused the Hell out of me.


Also, I did not post to knock you at all, just to ask you to clear that up. You turned it into a smartass contest.

Deleted your post, I see....

[This Message was Edited on 11/03/2009]

Sorry should have said Peterson family, Dr Judy Mikovitz and scientist will be in Washington DC
So I was a little confused apparently you got it, and look it up.

Isnt her name Annette Whittemore?

Isnt his name Dr Peterson

I will admit I have some fog but apparently it got your attention.

lol
hensue

How about you writing out my title and explaining it ok

Now THAT is some more good news! This is reported my the Whittemore's Daughter...gee, I almost put (Peterson's). This does get confusing!!

Spacee

Dr Judy Mikovits and scientist are at Capital Hill

now I see Annette is married to Harvey and Dr Peterson was the daughters doc.
Hello
so I am fogged but it is good news dont you think?

At least we are getting some attention good or bad.

Ok I got it wrong sorry, I think you got the smartass award ok

I went back and read it and realized it was not right. You were right

Why dont tell me about all the errors?

It confused the hell out of me I had to laugh when I read it back I deleted my post and did not wish to offend you sorry I thought it was funny
I am in a fog!
Hensue





[This Message was Edited on 11/03/2009]

If all those congressional people and health people want to know what is going on before the "stuff" hits the news!!

Hey, ppl contacting the news....let them know this!!

Spacee

I was just trying to help.

Kinda "nip it in the bud" before the noobs started quoting you ; )


Apology accepted :D


To further complicate the genealogy, Annette's daughter, writing on Facebook, is married. I guess that is why she kept the Whittemore name, with a hyphen : )


Please don't stop posting this information though. I wouldn't have known as soon, if you had not posted it when you did.

I'd issue an internet hug but I'm a dude, so... you know. Appearances to keep and all.

[This Message was Edited on 11/03/2009]

I am sorry for all this Whittemore's and Peterson and mikovitz and the daughter's name is Andrea right? I dont even drink and the only thing I have taken today is a quarter of a klonopin.

I would keep the Whittemore name!!

I do not get offended easy I was laughing the whole time I am reading these and I will say I have a headache from Hell!

Only on one side of my head in the front.

You cant get rid of me that easy
Hensue

I am SO EXCITED about this. I mean, shouldn't all those people on Capitol Hill want to know what the CDC and NIH have been doing??? This is so great, to me.

I'm going to try to sleep!

Spacee

I forget and think I am talking to women a lot. I have seen a lot of guys on the board lately nd that is a good thing. I am glad they are coming out and talking more. It is harder for a guy especially they never want to think they are weak.
Get this Dante my sister has a genuis IQ and is a teacher in English grammer blah blah

I of all the children 5 you understand was the only one without the college degree. We had an aunt who was a professor at florida State Go Seminoles huge sports fan.

Yes I will always be a Bobby Bowden fan but we are suckin in football!

Anyway she says I write like I am talking, I was in sales and love to talk sometimes crazy but I have a good sense of humor and I could talk you into buying anything. Two years of accounting Data Processing was all the school I could take.

By the way what is an internet hug?

Dantes do you have fibro and Cfs or am I getting to personal? Just wondering I worry much more about guys and pain than women. I guess it comes from raising two wonderful boys.
Take Care
Hensue

All you have to do is enter your email and password and most of the time your account will still be there.
Unless it has been over a year or so.

I have closed mine and opened it back after a 3 or 4 months

hensue

[This Message was Edited on 11/03/2009]

Whittemore Peterson Institute Right now Dr. Mikovits and scientists are in Washington , DC working on all of your questions and concerns. My Mom and Dad are there till November 9 th talking to government officials. The Whittemore Peterson Institute and the news of XMRV is causing quite a stir back on Capitol Hill!!!

Bump

spacee

"I'm just a Bill, yes I'm only a Bill, and I'm sittin' here on Capitol Hill"

This is great news. How exciting for us all!

Also, this is quite an entertaining thread. lol

Thanks,
tee

[This Message was Edited on 11/04/2009]

hensue, I suppose an "internet hug" is just an expression of good will/compassion. Olive branch ?

Sounds good, I think.


Anyway, I was just on facebook and saw that Andrea Whittemore Goad "started" treatment. I was really excited, thinking she was starting a HIV drug.... that was snuffed out real quick.

She said " I am starting treatment today. ".... I don't know WTF good that post was. She has been on Ampligen for years. I think that post was a little deceptive. Her original post is on the "Wall" and the Ampligen post is in the "Notes" section.

Personally, I believe Ampligen is a scam. I say this due to a lot of research, on my part. It is a drug that has been around for nearly 50 years and has been trying to get FDA approval for 25-30 YEARS. Yes, YEARS !!!

It may help a very small subset of CFS/ME people but the price far outweighs the benefit. If it were an HIV med that only helped a very small % of people, then it would not be very useful.

To me, it may have been useful 25 years ago but now, things are so much more advanced... and cheaper. If Andrea Whittemore wants to pioneer this illness, then she needs to stop advocating that anecdotal crap and see if any HIV drugs will work.


I know I steered this off into left field but I believe it has some relevance. I mean, how can we trust a Dr. and Institute [Peterson and WPI] that love Ampligen ?

Placebos have likely helped as many, and has the same efficacy, as Ampligen has.


The WPI may be pioneering research but I am not so sure I would let them treat me. Ampligen costs 20-40 thousand/year for an indefinite time. Since it is not FDA approved, because it doesn't really work, insurance will not cover it. That means 20-40K for how many years, out of pocket ?

The WPI is going to have to wake up, or be left behind. They might as well be telling everyone the cure is on Mars.

God, I need to be well.... so I can take a vacation... and not make such posts :)

Good thoughts. But I was around when the first clinical trials of Ampligen came out. The few it kept out of the nursing home, really appreciated it. The woman who liked it at first and then later recanted cause of cancer and other bad things years after ppl took it.

I strangely enough had dinner with the first owner of Ampligen. I think there were maybe 3 partners and they sold out to him. By then the drug was shut down by the FDA and in Belgium for study, he invested all his money, got his friends/family to invest cause he believed in it so much. I sorta think he must be gone by now (not a spring chicken) and others own it. We had a mutual friend who didn't know the connection when dinner was set up.

Some think that the FDA would never approve it cause it would be admitting that CFS was an illness and there is a treatment for it (not cure).

I do agree that they have taken so much time, that I wouldn't be interested in it. But I am remembering someone else who used to post here who was in a more recent trial and liked it.

To each his own. I guess.


Just thought of something. When I was first ill. I was severely ill. Had to lie down to eat. Ate only fish and baked potato three times and day and up to 6 cans of ensure. I was headed for a nursing home....that probably would have caused me to try it...if I had lots of money.
Spacee

[This Message was Edited on 11/05/2009]

I find Ampligen intriguing but I have unfortunately found the same thing that Dantes has when I've gone surfing on the web for it as a treatment for CFS. My problem too is that I can't handle meds or supplements and I'm afraid Ampligen would make me worse like Valcyte did. Then there's the cost. But when I saw that man on CFSAC say that he and his family are moving to Reno just so he can have access to Ampligen that makes me want to try it.

I do trust the WPI. I think they're right to fight for Ampligen to be made available as a treatment for CFS because it has helped some people with it and anything that helps any of us should be legal for us and reasonably priced. I really appreciate the WPI for being advocates for us.

I would be in a nursing home if my hubby didn't take care of me. That's just how it is.





[This Message was Edited on 11/06/2009]

Then for some reason she had to go off. Now she is back on it, I do not think she would be back on the drug if it had not been helping her.

She has not been off the drug for to long.

Now she is back on the ampligen.

Thanks for the Olive Branch, Ill take it and one right back at you. I have no idea how old you are Dante but I feel like I am talking to my son.

Hensue

Every time I read your post I laugh my head off!

why did the ampligen lady at the meeting comment on it? if they did not think it was something to work with.

I know this is done IV the ampligen, I did not know it was that expensive. Why do you have to take it that way?

I really do not know much about this drug except it has been waiting fda approval for a while.

hensue

I think even if it is proven XMRV is the direct cause of CFS and we get antiretroviral drugs, Ampligen will still be useful. I think it has a very good safety record, better than most anti-HIV drugs.

Ampligen is a synthetic RNA and it activates the receptors in the immune system that detect viruses. So taking Ampligen would turn on your antiviral defense. Ampligen is kind of like a fake virus (and this is why the company is looking into getting it used as an adjuvant to vaccines). Anyway I think this would be useful in CFS because many of us have picked up so many coinfections during our illness, and it would be so difficult and expensive to take a drug for each individual coinfection we have. Just figuring out which coinfections we have is hard enough so it would make sense to just take something that is broad-spectrum. I just hope it is approved soon!

[This Message was Edited on 11/06/2009]

The concerning thing to me about Ampligen is that there is only 1-2 articles on it and those articles were based on a fairly small number of subjects. (less than 100 if I remember right)

The cost-recovery trial results have not been published either - results mentioned at I believe some conference, which again, if memory serves right, the results were not very impressive.

Therefore, even discounting effectiveness, safety is still an issue. Unlike antivirals/ antiretrovirals which even if effectiveness not shown yet in CFS, we have a long history of their safety/ side effects from use in millions of people.

Like Dantes, my read of Ampligen is that the drug has been around for 20-30 yrs. and been punted around as a possible treatment for all sorts of illnesses, very scattershot.

Perhaps it does help some people but the FDA needs to coerce Hemispherix into making their data PUBLIC if they're going to approve it. As some of you know, there have been scandals involving the FDA and various drug/ device makers.

I looked up some info on Ampligen about a week ago. I vaguely remember something about problems in studies on Ampligen, in that they weren't done up to FDA standard?.... And some other controversy. I don't remember exactly. Of course, that doesn't mean the drug is not effective. Given the problem in even developing a reliable cohort, it is only logical it would be very hard to see if it is effective for a certain illness. The illness is not even definable by objective tests.

Then again, maybe FDA is heavily influenced by CDC and NIH influence.

Sorry, there is just so much this CFS brain can retain.

I do think it may be out of line to bash another patient, even a prominent one, for her treatment of choice. Andrea does not owe anything to us. She has a right, without having to answer to anyone else, what treatment she tries.

Also, I think that part of the follow up studies on XMRV will include if something that kills the XMRV virus, as seen in the petry dish, also results in restored health and accompanying test results. This is not part of the treatment tests, this is part of proving if XMRV causes CFS. If the virus is killed or put into dormant position and the health is better, both clinically and in objective tests, then it can be said that XMRV caused the illness. Virus gone and illness gone can link cause and effect.

Again, if my above comment is incorrect, please let me know.

Tina

The slams on Ampligen and Andrea Whittemore and WPI are way off-base and inappropriate. First, it was Dr. Peterson's idea to first use Ampligen in CFS patients almost 20 years ago, so trying to say the company is just searching for a disease to use its drug on is misleading. The amount of time that has elapsed since the drug was invented is wholly irrelevant. There are many drugs that sit on a shelf in a lab for decades and then are found very useful for something. Finally saying Ampligen is useless and works no better than placebo is a complete lie. If that were true it would not have orphan drug status, cost recovery status, and would have been rejected for full approval on the PDUFA date. I think it is bizarre to attack people who are trying to help us. If you want to go on a witch hunt, look at the government agencies and representatives that refused to believe CFS was a real disease.

[This Message was Edited on 11/06/2009]

Here's what I don't get about Ampligen. We can't get it for CFS but they're using it or were going to use it as an adjuvant for the H1N1 vaccine??

Huh?

Okay, I'll line up for a shot now, just hold the rest of the vaccine please, I just want the Adjuvant straight up. lol

Although anecdotal, didn't the guy who said he was moving to Reno tell his T Cell test results before and after Ampligen?

Tina