Mikovits interview states the FDA will confirm WPI findings in a Sept publication

[Sasha]

I think the tension is getting to all of us. We sure seem to be getting testy, quick to give and take offense. I'll sure be glad when we get some good hard news instead of these little snippets and teasers. I like to think that once things aren't so up-in-the-air and suspenseful, and start moving forward, we won't need to keep sniping at one another.

In the meantime, maybe we could cut each other some slack and try to work at keeping our hackles down.

Whether it's one study or two, published this month or next, "leaked" wisely or unwisely, let's not lose sight of the fact that there's good news ahead. There's some solid science being done. Let's be happy about that!

We don't have to all join hands and sing kumbayah together, but maybe we could relax, lighten up and smile a bit. :sofa:

Good advice, ix! It has been a weird day. Waiting for the PNAS paper to come out today has been like watching paint dry (or fail to dry, as it has turned out).

And we'll be doing it next Tuesday (and possibly the Tuesday after) so maybe we should get round the virtual campfire and sing a few songs!

 

[rebecca1995]

We know that Lo and Alter were co-authors of the (one of the) paper(s) because of this email many of us got 7/27:

Thank you for your June 30th email to Dr. Francis Collins, Director of the National Institutes of Health (NIH). I am pleased to respond on Dr. Collins behalf.

You expressed concern with the delay in publication of the paper written by Dr. Shyh-Ching Lo of the Food and Drug Administration, Dr. Harvey Alter of NIH, and their coworkers, about their studies on the Xenotropic Murine Leukemia Virus-Related Virus (XMRV). As typically occurs in the process of publishing scientific findings, the authors are presently addressing issues raised during the peer review of the manuscript and expect publication soon.

Thank you for your interest in chronic fatigue syndrome and related research to help science provide answers to the many questions that yet remain about this condition.


Sincerely yours,

/s/

Vivian W. Pinn, M.D.

Associate Director for Research on Womens Health

Director, Office of Research on Womens Health

So, obviously there's a paper in the works that's a joint effort of NIH and FDA. Perhaps there's a second paper solely by FDA coming out later? Hmmm...

 

[Sunshine]

I just didn't know that a replication study would need to be replicated. How many times?

Hi. I've spent a short while trying to find a few facts and got this so far. I thought we could compare XMRV to HIV in a timeline and see also about the replication studies it took to confirm HIV.




1981

AIDS turns up in America in large numbers.

1982

CDC uses word AIDS for the first time, dropping term GRID (Gay related immune deficiency).
CDC reports first cases of possible mother to child transmission of AIDS.

1983

Institute Pasteur in France finds LAV sends samples to CDC in America. LAV sent to NCI.

1984.

CDC researches 'Patient O', a gay man . Research confirms AIDS can be transmitted from person to person.

CDC's Dr Mason announces they think they know what causes AIDS, believing it to be LAV.

USDHHS Mararet Hecklet announces Dr Gallo of the NCI has found caused of AIDS which is HTL-III.

Possiblity launched that LAV & HTLV-III were the same virus.

Companies write to USDHHS for license to develop test for public.

1985.

CDC agreed LAV and HTLV-III are the same virus.
FDA licenses first test for AIDS, an antibody test.

1986.

Anticancer drug for the 1960's (AZT) first used in AIDS drug trial. Trial halted to save lives as placebo patients are dying whilst just 1 AZT recipient dies.

US Surgeon Generals report on AIDS published with advice on how to stop the spread of AIDS.

1987.

Public health campaigns begin in UK.
FDA approves first AIDS drug, AZT.


*From what I can see, it's one confirmation study of Pasteur Institute by Gallo in the USA.
*It took 4 years from discovery of HIV by Pasteur Insitute to the first drug for AIDS being approved.

 

[ixchelkali]

We know that Lo and Alter were co-authors of the (one of the) paper(s) because of this email many of us got 7/27:


So, obviously there's a paper in the works that's a joint effort of NIH and FDA. Perhaps there's a second paper solely by FDA coming out later? Hmmm...

Well, IF there's a second FDA paper, maybe it could be one of studies that the Blood XMRV Research Working Group is doing; that's under the FDA.

 

[Rivotril]

@ Sunshine

i see you didnt understand the essence of the point i was making
WPI literally said that their study was confirmed by FDA, and that this study will be published in september, how much clearer can they say things?
and then you commented that WPI were maybe referring to another (maybe european) study?
they mentioned the study literally, so for me it was kind of strange that you came up with that comment.
it was more more less a comment from someone who didnt read the article at all. so thats why i reacted that way.

this has nothing to do with the other point, if there are more studies. thats a totally different discussion.
maybe there are others ( i hope there are 100 more), that has nothing to do with it.
But (and thats a total different discussion point) for me it would be strange that Mikovits would be saying that the Lombardi results will be confirmed in september by FDA, if there is coming another paper from Alter/PNAS next week (remember the bulletpoint in which Alter states that they (FDA/ NIH) have confirmed the science paper).

maybe the PNAS paper will come out next week, i hope so...

for me it is no pointless matter, i have seen enough threads here filled with ghost stories , so i just check the facts, and wait for what comes , instead of getting disappointed.
but my comment was not on the fact that you mentioned more papers, as i said above.

you may think what you want and post what you want, but if wpi says gras is green, and you react with: maybe they meant that it is red? then you can expect a reaction.
for the rest i have totally no problems in what you post and i think your reaction belittles me also.
so don't make too much of it please, and sorry if my point was not clear.
hope you dont react again with a whole story that has almost nothing to do with my initial reaction.
we are all sick, and dont want to waste energy on that kind of things, peace

 

[LJS]

Huh, I am confused where is this talk of a possible second NIH paper coming from??

 

[Sunshine]

LJS, Cort hit the nail on the head with some thoughts of his, if I may quote here.

My two cents - Annette Whittemore said several positive studies are on the way. One of these, I think for sure, is going to the UK InvestInME-WPI study utilizing an independent laboratory. There was always some confusion about the positive FDA/NIH study (studies?). My recollection is that two independent labs, one in the NIH and one in the FDA, had confirmed the findings. I suppose they could have been part of one paper; the CDC paper employed several labs to back up its findings.

I agree with Cort, there is some confusion if there are two studies as two government health agencies (NIH & FDA) were always originally quoted as being involved in a CFS XMRV replication study. Yet, today we just here about the FDA only leading to some speculation possibly that an NIH study was performed also and is yet to be made public. However as Cort timely points out (that I forgot) the CDC used more than one lab for the negative XMRV study results, and that this fact could explain the apparent missing NIH XMRV replication study as the NIH's work may be contained within the FDA's and is thus a non event.

Today we heard a little snippet from Judy Mikovits about the FDA, the NIH wasn't mentioned. Even more confusingly, perhaps the NIH is a study on blood supply detection of XMRV and not in XMRV in CFS at all. Either way, it's all positive news. Literally.

 

[ixchelkali]

Hi. I've spent a short while trying to find a few facts and got this so far. I thought we could compare XMRV to HIV in a timeline and see also about the replication studies it took to confirm HIV.


1984.

CDC's Dr Mason announces they think they know what causes AIDS, believing it to be LAV.

USDHHS Mararet Hecklet announces Dr Gallo of the NCI has found caused of AIDS which is HTL-III.

Possiblity launched that LAV & HTLV-III were the same virus.

Sunshine, your comparison with the AIDS epidemic reminded of a passage from And The Band Played On. On April 22, 1984, the New York Times had a front page story saying that the CDC had announced that the Pasteur Institute in France had isolated the virus causing AIDS. So the next day, the HHS Secretary called a press conference to announce that Robert Gallo of the NIH had discovered the virus causing AIDS.

Today we add another miracle to the long honor roll of American medicine and science, she declared. Todays discovery represents the triumph of science over a dreaded disease. Those who have disparaged this scientific search those who have said we werent doing enoughhave not understood how sound, solid, significant medical research proceeds. From the first day that AIDS was identified in 1981, HHS scientists and their medical allies have never stopped searching for the answers to the AIDS mystery. Without a day of procrastination, the resources of the Public Health Service have been effectively mobilized.

The doctors who accompanied Heckler to the podium blanched visibly when she proclaimed that a blood test would be available within six months and a vaccine would be ready for testing within two years. None of the doctors with Heckler on the stage believed this claim, and nobody could determine where she had conceived such deadlines, which they knew would never be met.
[...]

After the years of frustration the announcement of the HTLV-III [later renamed HIV] discovery deserved elation, Don Francis thought as he watched the live Cable News Network coverage of the Heckler press conference in the CDCs television studio with other members of the AIDS Activities Office. Instead, he felt burdened by the conflicts he saw ahead. The French were being cheated of their recognition and the U.S. government had taken a sleazy path, claiming credit for something that had been done a year before. Francis was embarrassed by a government more concerned with election-year politics than with honesty. Moreover, he could see that suspicion would play a greater, not a lesser role in the coming AIDS research. Competition often made for good science, Francis knew, lending an edge of excitement to research. Dishonesty, however, muddied the field, taking the fun out of science and retarding future cooperation.

I think And The Band Played On should be required reading for any ME/CFS activist, along with Osler's Web. There's a lot in there we can learn from, as a cautionary tale, if nothing else.

 

[urbantravels]

I'm currently reading both. Because I have nothing better to do. No, really, I have nothing better to do.

 

[Rivotril]

LJS, Cort hit the nail on the head with some thoughts of his, if I may quote here.



I agree with Cort, there is some confusion if there are two studies as two government health agencies (NIH & FDA) were always originally quoted as being involved in a CFS XMRV replication study. Yet, today we just here about the FDA only leading to some speculation possibly that an NIH study was performed also and is yet to be made public. However as Cort timely points out (that I forgot) the CDC used more than one lab for the negative XMRV study results, and that this fact could explain the apparent missing NIH XMRV replication study as the NIH's work may be contained within the FDA's and is thus a non event.

Today we heard a little snippet from Judy Mikovits about the FDA, the NIH wasn't mentioned. Even more confusingly, perhaps the NIH is a study on blood supply detection of XMRV and not in XMRV in CFS at all. Either way, it's all positive news. Literally.

of course the paper is one paper by FDA/NIH. this was mentioned by hillary johnson already in june :

http://oslersweb.com/blog.htm?post=718351

"Lastly, the authors of the PNAS paper, though venerable, were from the National Institutes of Health and the Food and Drug Administration."
"Alter’s collaborator, the primary investigator at the Food and Drug Administration, is a highly respected and seasoned scientist...) He is Shyh-Ching Lo, who two decades ago identified a pathogenic agent, an HIV-associated mycoplasma."Another contributor to this study is, of course, Harvey Alter, at NIH"

so it was known for many weeks that the pnas paper is an alter (NIH)/Lo (FDA) collabaration paper, so thats maybe why i didn't understand much of the rest of what you said.

theres still the theorethical possibility that there is an addional FDA paper or something like that though

 

[V99]

Really - can you provide links to those stories? I haven't seen plenty of US scientists stating that (to the media).

I can't imagine that Dr. Alter would need to 'leak' a story that has been widely reported to be in press and that it was becoming clearer and clearer was positive.

Alter?

Here is one scientist, Wanda Jones, who said in a letter, about a month ago:

The authors truly believe they have an even stronger paper than they submitted, and I think we all will be pleased when it finally publishes. We hope that will be soon, but we have no control over it.

That confirms that the result is the same.

I also posted on here in the last few days that I had heard that the paper would be out in September.



As for the DHHS, well they broke protocol for political gain. They did not block the paper for health reasons at all. It doesn't matter how big Alter is, if they wanted to shut him up and destroy the study, they could do so very easily. The thing to now realise is, even when this study is published, these guys who have kept everyone here sick and abandoned by the medical profession, will still try to corrupt the science, fix the situation and weasel their way out of justice. We have to keep up the pressure, demand research, and demand that the CDC have nothing to do with this disease. They are not competent enough, they are not scientific enough, they have no interest in controlling disease.

 

[katiemoomoo]

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
~~~Arthur Schopenhauer~~~German philosopher~(1788 - 1860) ~

 

[Esther12]

All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
~~~Arthur Schopenhauer~~~German philosopher~(1788 - 1860) ~

That's why I try to only believe ridiculous things.

 

[gracenote]

That's why I try to only believe ridiculous things.

Good one, Esther.

 

[free at last]

I dont normally trust leaks, but when its coming from the wpi, i have to say im really very excited about this, i never believed it would be so. and spoke frequently about a coverup, it seems i may be wrong, and i certainly want to apologize to any that may have become down hearted from my negative comments.

I said them for a good reason, i sad them because i believed it. Many on here told me otherwise, but i just couldnt belive it was so.

I think the evidence clearly suggested coverup. But it certainly looks to me now, i was wrong about that, and the NIH paper will be allowed to be released un tampered with.

I still can not understand why the CDC would shoot themselves in the foot knowing the NIH paper was to be released, Is it possible they thought it could be stopped, again i dont know, but who cares as long as the truth finally has come. This is a great day for everyone, who has battled this horrible illness, and a new dawn for the future of ME CFS patients. I will save my twenty year old brandy for the release of the paper, a double warming effect as i sip that, and read about another strong connection of xmrv and cfs parients

 

[V99]

It doesn't mean they havn't tried to cover it up, and it doesn't mean they won't still try to play it down or sabotage it now. Don't forget in the US that is what they have done with this disease for 25 years. I'm not pretending they won't, so that I can mount an effective campaign to make them do the right thing for once.

 

[free at last]

I know what you mean V99, im trying to go beyond all that, help me out here, Judy seems so certain. Stop it your starting those thoughts again,
who said disinformation. see, see what youve done, and i nearly cured myself. no no corts right, hes right about this. there will be a positive release. wont there ?

 

[V99]

I really do think there will be a positive release, don't get me wrong, it's what happens next we have to be watchful for.

 

[Sunshine]

I still can not understand why the CDC would shoot themselves in the foot knowing the NIH paper was to be released, Is it possible they thought it could be stopped, again i dont know, but who cares as long as the truth finally has come. This is a great day for everyone, who has battled this horrible illness, and a new dawn for the future of ME CFS patients. I will save my twenty year old brandy for the release of the paper, a double warming effect as i sip that, and read about another strong connection of xmrv and cfs parients

CDC had to alter the CDC website on 'CFS' to remove any previous data about Cytokines, Immune Dysfunction and Post Exertional latent response to exercise etc. They also added more bs about psychosmatic reasons for CFS. Also, the website has a flashy new 'XRMV' button which when clicked states XMRV is not associated with CFS. Media, journo's will read this, putting 'controversy' into the FDA (Alter/Lo) and WPI's (Lombardi etc) findings, which makes it look like XMRV in CFS is probably a 'maybe' instead of a 'definately' a yes in the eyes of the uninformed public and any news crews who stick this on CNN or Fox News who have no idea about the politics and how the CDC is involved in the cover up over 20 years now.

All very useful for when the Alter paper is released.

Delaying the paper buys the CDC time, and keeps them one step ahead.

 

[Jessrose21]

If I ever have a daughter, I will name her Judy Annette.

If I ever have a son, I will name him David Daniel.

If I ever have a snake, I will name it Bill Simon. Nah, I'm just kidding! That would be an insult to the snake.