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

[sproggle]

Love it!!! :tear:

Hey maybe that's the real reason we are being kept in the dark, they are afraid a load of sick (possible contagious) people may start stalking them!

Tick, tock, tick...

 

[julius]

I'll choke one of the security guards with a feeding tube. You get the other one in the eye with an IV needle.

 

[bullybeef]

Check this out....XMRV is being discussed on an entertainment forum!!!

http://www.digitalspy.com/forums/showthread.php?p=41259947

 

[lansbergen]

Seems to me, that since it is in the blood, disappears and then goes into cells, then moves around to different types of tissue (see the macaques study), I would think there is period it can be passed in blood, then not. Possibly, then, a time of replication, immune system down, it goes into the blood again. (has to travel to other tissue somehow.)

It seems the disappearance in the blood may have to do with immune system response to it. But, there may come a pivotal point, as in HIV, where the damage done to immune system is too much for antibodies to get back under control. But since this virus has triggers (progesterone, cortisol, etc.) then it might go dormant, or at least not be replicating much. Immune system has it under control. But another trigger happens, and immune system loses ground again, symptoms come back, it's out in the blood again. Mikovits spoke about the sudden cytokine response, like you're walking in the grocery hat can store, and a flood of cytokines are released.

So the flood helps in getting the virus under control again. It is at low level. Isn't floating in the blood. But then, we feel better, we do some cortisol stuff, or our progesterone goes up with monthly cycle, and there we go again. Another round.

So maybe infectivity, saliva and blood, comes and goes. All matches to our good days / bad days scenario and the chronic nature, as opposed to HIV, that just gets in, keeps replicating until immune system keeps up, two years later, if no treatment, person is dead from co-infection or cancer.

Which brings up the other issue. I agree that FeLV is likely more transmissible than XMRV. But relating to HIV would bring fear of imminent death if no treatment. And HIV has connotation of immoral activity. So I don't like that comparison.

Any other ideas. I thought FeLV was most like XMRV, in that many cats have it but don't get sick. It causes immune system and cancer problems. Of course, if a cat has the immune system problem with FeLV, very likely, that cat will die. But some have a mild form.

Can we say XMRV has some features similar to HIV and some similar to FeLV?

Got to come up with something.

Tina

Well said.

There is one thing that seems to be overlooked. I have not seen anywhere that XMRV infected people could be infected again by someone who is spreadng the XMRV virus and that will trigger the flood.

 

[bullybeef]

Do I really want to, or am I just going to be really pi$$ed off? :worried:

Healthy people are panicking!!! NOT

 

[bullybeef]

It seems the public are not biting!!

 

[julius]

Check this out....XMRV is being discussed on an entertainment forum!!!

http://www.digitalspy.com/forums/showthread.php?p=41259947

It seems like that guy just signed up on that forum to generate a bit of public awareness (panic). I get the feeling it's someone who has been following the XMRV story (perhaps a patient, even a PR member??) and want to spread the word.

 

[Recovery Soon]

Why did wpi take the press release down?

 

[bullybeef]

Yeah, when I read the first few post, I thought the main poster knew too much. Reading on, people don't really understand what a retrovirus is, even if you tell them. I suppose this time last year, I wouldn't either.

I shown many people the Dr. Oz, and they don’t accept it. Until it’s on national TV, no one will take much notice. Sorry, I should have read it all before I posted, but it does give us an insight into what a small number of people feel.

 

[julius]

Looks to me like Summerone is a PWC plant. And indeed, the public does not seem inclined to panic. Yet.

Interesting that people are a little jaded by the previous flu scares. I wonder how that will play into how XMRV unfolds.

 

[boomer]

Well, there is an announcement today on the cbc web site that the Prime Minister of Canada is pledging to give $1.1 billion for women maternity and children. I took the opportunity to add my comment in the forum that follows each item. I think it is a good thing to raise awareness on national news site forums of what is upcoming. The public is never going to hear about the neglect you write about on this web site.

http://www.cbc.ca/canada/story/2010/06/25/g8-g20-huntsville-leaders.html

And this was my comment:
Well Communication Strategies are pretty important to this government. They are funding over a billion $ for maternity to make it look as if women are a priority for this government. But in a matter of days there will be some news coming with pretty solid confirmation about a retrovirus xmrv that has caused chronic fatigue syndrome and true stories of terrible neglect are going to be coming in documentaries, books, and in some cases in the US people are suing various sectors. For decades women have been telling the government they were sick and the government never did any research. Government was told it was a retrovirus decades ago and no research was done. Be prepared to see a lot of anger from women when the news comes out soon.

 

[justinreilly]

To be honest i dont give a jot to the stigma attached to xmrv . All i want is to start living my life again , ive already lost a lot of friends and same with family as they dont understand this illness so to me it makes no odds if folk treat me as a leper or not cause i might as well already be one already.

If im pos and i can get treatment and finally be able to be a mum to my kids again then ill be happy . I dont have much quality of life at the mo being mainly housebound so anything would be better than this . Im not expecting miracles and I certainly dont expect to get back to 100% of the old me back , but any improvement will be welcome .

Start looking at the things you will be able to do again if your health improves from what it is now , not whether folk are gonna be accepting or not . which is more important ?

I totally agree, Polly!

 

[justinreilly]

Here's an email i sent my dad today stating what i think the significance of the NIH and FDA findings are. He had asked me if there was a causal association shown. (he worked long ago as a lawyer at FDA)

I wrote here that 9 of approx 200 got lymphoma, now i'm remembering i also heard the figure of 19, does anyone know? (pls PM me as well as posting thx).

Dad,

There's just a strong association, no direct proof of causation. how strong an association at FDA and NIH we don't know yet- will have to wait for the paper to be published (at least as strong 67% and sounds like stronger) WPI, CC and NCI published 67% using four methods but later found 98% by adding a fifth (presented at conferences but unpublished as yet).

I'd say the chance the most important cause of ME is retrovirus(es) (or very similar viruses) is 99%. There is no other plausible way to explain what I call the curious case of the woman from South Africa who transmitted Burkit's lymphoma to her four relatives in the US ca. 1982 all living in different parts of the US. Burkit's clusters in Africa, but there were only about 10 cases per year in the US at that point. So far 9 out of 200 of Dr. Peterson's patients in Nevada have died of Burkit's or the related (and also exceedingly rare) mantle cell lymphoma. He was able to culture XMRV from 20 year old mantle cells from one of his deceased patients and was able to get it to infect a seperate cell line! AIDS is the only other cause of these vanishingly rare lymphomas.

Thus the chance of catching Burtkit's in the early 1980's was about 30 million to one, but if you have ME (or AIDS) it's about 20 to one. There is no plausible way to explain this except that the retroviruses associated with ME cause the lymphoma and if they are pathogenic enough to cause fatal lymphoma, they are pathogenic enough to cause ME which presents as a classic retroviral neuro-immune disease.

AIDS is also the only other significant cause of the devastating HHV-6 infections that are common in ME patients. etc. etc.

XMRV and DeFreitas retrovirus probably work in concert (perhaps with other retroviruses and HHV6 etc.) but even if XMRV isn't the only cause, it most probably contributes very significantly to the illness burden and using HIV drugs on it will almost surely result in a significant reduction in illness burden, ie an effective treatment.

the main point is CDC, NIH and the UK govt will have to start funding this and stop persecuting us. this is the main reason we are so excited.

look forward to seeing you.

J


Justin Reilly



To: justinreilly
Subject: Re: XMRV in ME Confirmed by both NIH and FDA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Date: Thu, 24 Jun 2010 10:39:10 -0400
From:

Hello Justin -

I read the article about the independent FDA findings. Question: Does the presence of the retrovirus indicate the cause of ME or a commonality among ME patients? If the latter, I gather much more needs to be done, but at least the investigators have a much better lead.

Love,

Dad

 

[redo]

@Justin Reilly,

If XMRV is caused or partly caused by lymphoma.
And CFS is caused or partly caused by XMRV,
Then it would make sense that lymphoma drugs could work for CFS.

Have you seen this:
forums.aboutmecfs.org/showthread.php?2621-Rituximab-and-XMRV-a-possible-connection

I know it's speculation, but why not speculate...

About the lymphoma links; do you have a source for them?

 

[justinreilly]

@Justin Reilly,

If XMRV is caused or partly caused by lymphoma.
And CFS is caused or partly caused by XMRV,
Then it would make sense that lymphoma drugs could work for CFS.

Have you seen this:
forums.aboutmecfs.org/showthread.php?2621-Rituximab-and-XMRV-a-possible-connection

I know it's speculation, but why not speculate...

About the lymphoma links; do you have a source for them?

@redo-
interesting! I had forgot about that. I don't have brain power now to go thru that whole thread yet, so will come back.

Re: lymphoma info is from oct 2009 cfsac meeting video on nih site. and the bible (osler's web). you can search on the book's page on amazon by clicking on the image of the book cover. you can search for 'burkitt's lymphoma". some of it is on p.92 in the footnote.

 

[Sean]

I'm wheelchair-bound outside the home; I'll have to aim somewhat lower.

He he he. Thanks for that, needed a laugh today.

 

[Recovery Soon]

Guys...

Why do you think WPI pulled the Press Release off their site?

This has me baffled.

Thanks.

 

[redo]

Maybe they decided to not link to it after all because it's a leak.
I could see why some would react to it (like the researchers who's study is being written about), despite that it's only a link...

 

[Alexia]

Guys...

Why do you think WPI pulled the Press Release off their site?

This has me baffled.

Thanks.

Me too, why? first it was on their Facebook, then they deleted and it was on their site and now disappeared!

 

[ixchelkali]

Hi please forgive me english is not my first language. I did read this forum for some time now, i saw your post that you said you were helped by prayer, if you test negative what do you think you could have been cured of? I'm wondering about this too.

Hello, Grishnkh. Welcome to the forum. English may not be your first language, but you use it very well. If it is not rude to ask, where are you from?