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

[Rivotril]

The results could have completely changed - that's why the DHHS asked him to do new testing - that's why we have been checking PNAS so frequently. Nobody knew what the ultimate results of the new study would be. ( I think I've had my say on this...that's enough for me )

Mindy already reported that resuls werent changed.
And would you think that the study who found 80% XMRV and confirmed lombardi study, if they found other results in 2 weeks or so retesting, that they would publish it in weeks?

thats no good reasoning: first u find 80% and present at zagreb, after months of studying and testing , FDA and NIH
and lets say that after some additional testing, which only took 2 weeks or so you find nothing, and then you say: okay lets publish this totally contradictive result. no you wont you would go back to things again, and work it all over. it doesnt make sense.
so the fact that the paper was so fast again offered for review to PNAS already made 99,999% sure that it still was positive


for me , i stalked PNAS NOT because i has fear about the paper being negative, but i just want to see that the paper REALLY is released, after all the CDC/ DHHS blocking stories. i think many of us were, at least for a moment, afraid that it wouldt come any more, after the negative CDC paper and the whole strange things that happened before and after that.

So I just stalk PNAS because i want to see that it is really there, although i said before that i heard it would be september, and i still hope it will be sooner.

 

[urbantravels]

I'm still not convinced that we now have a Sept. publication date confirmed. One article in one local paper, that seems a little garbled to begin with about the exact nature of the various publications involved. Sure, overall everything seems positive, but the details here may not be 100% reliable.

 

[Cort]

Cort, what do you mean by this? I thought no one agreed we had herpes viruses anyway? Do you mean the type of people the Stanford group have been treating, ie those with high viral titers for HHV6 and EBV? Or post EBV CFS cases?

Also where is this from? I didn't get this from Judy's article?

BTW, the thing that bothered me about Judy's article is that the Alter paper sounds like its not coming out until September. If that's the case I hope it doesn't slow things down for the XMRV conference. My biggest concern as a patient is that the science on this is not slowed down in any way.

I think the CDC has kind of felt that herpesviruse infections may be present in some CFS patients but that they do not cause much harm. After talking to Jim Jones, though, Marly Silverman reported that he felt that an diagnosis of an active EBV or CMV or some other infections meant that a person does not have CFS. He does not believe HHV6 and 7 are 'real' so to speak. I don't know the exact parameters. To my knowledge what constitutes an active EBV infection can differ from researcher to researcher.

Annette stated on Nevada newsmakers that several positive 'replication' studies are on the way. If they are replication studies then they will be using the same techniques and will validate each other - if that is true then the XMRV FDA finding could itself be validated fairly quickly - allowing the field to move onto the next step.

 

[Megan]

Let's be happy that the PNAS study will be a strong positive - or that's what I think I'm hearing from Mikovits and WPI. That's what's most important.

If Judy could sing, maybe she can, then this is her song:
http://www.youtube.com/watch?v=jUJ5HF8ROVs

 

[Sunshine]

Thank you Cort for posting this very hot off the press Judy Mikovits comment on the front page that for so many people, brings hope.

 

[voner]

My take on this prepublication discussion is that like in so many other areas of our society, research scientists, scientific publications, and the right (government) agencies that sponsor these studies have not figured out how to deal with the fact that there are active patient communities who monitor the Internet/WEB on a constant basis, looking for new information on their disease, and then quickly post that information and that creates a flurry of additional spinoffs…

In my experience , The scientific publications, and the lead authors of these studies have a very invested personal/professional interest in holding off any information about the publication of the study, so they can make a public-relations/media splash - which can generate much many more research $, added prestige, etc. for them (both the journals and the authors benefit). But so much of what can be said and what can't be said is clearly stated by each journal to the authors… for example, some journals demand that a "summary of the research" be submitted for publication, along with the paper - which I love because if you're doing research you can weed out papers pretty quickly this way..

The US government funded, scientific research business is a dog eat dog world. It's full of bureaucratic hoops to jump through. It is also full of huge egos. Anybody know anybody who actually attended the latest neurology conference in Bozeman Montana? It would have been interesting to see who was hobnobbing with who? See the scientists at these conferences many times past gossip back and forth -- and that's the way they do their concept -- not via a public forum on the Internet, like we do… and they get kind of offended when we publish information on the public forum that they may already know via gossip. At least that's what I am guessing right now…..

Finally, I also think we are all lucky on this forum to have Cort. He does his interviews with doctors and researchers using great respect and in-depth knowledge to interview these folks. Just by having him out there on the forefront and meeting the clinicians and researchers has to benefit us all. Thank you, CORT.

(voice dictated -- and so it might be a little garbled)

 

[Kati]

Can't believe that some people have the nerve to say that Dr Mikovits has broken embargo= that is SO LOW, especially spreading the news publicly on co-cure and especially on the week of WPI opening and celebrations.

Blows my mind.

 

[Recovery Soon]

Actually I would think it would be the opposite - remove the virus and the immune system repairs itself. That is what happens, I believe, with AIDS. .

Definitely. But did you get the sense from Judy's comments that this seemed like something she believes they can do now- with anti retro's, or anything else up their sleeve?

It kind of felt like that to me. And the Andrea excitement only seemed to add to that sentiment.

 

[Daffodil]

in one article (chicago newspaper?) dr. mikovits once said that although she wont recommend taking the ARV's, she also wouldnt discourage(?) or something like that. and now she says there are 3 drugs that work on the virus...it seems to imply that taking the drugs might be an option...?

of course i am taking them and nothing is happening! argh.

when she says they can see if the immune system is normalizing, i wonder if she is talking about RNase L and the usual suspects, or new stuff?

-S

 

[Cort]

I could be wrong but I got the feeling that Andrea is using more than the standard antiretrovirals. In any case - its very early days. It would be astonishing ifthey came up with something really effective and figured out the doses and everything right off the bat.

We'll see when the paper comes out what the immune problems are. I have no idea.

 

[Cort]

Cort, I just hope those PNAS articles are still correct.

I was not trying to have a go at you, am actually quite a fan even though I have often countered you. I tend not to post so much when I agree with something.:Retro smile:

Thanks and thanks for digging up the PNAS prepublication policy. I added this to the article

Megan on the Forums has noted that PNAS has a very liberal 'prepublication' policy that allows the authors of the paper to freely provide summaries of their findings to journals, etc. prior to publication. Different journals clearly take very different stances on this issue. You can check out their policies here )

 

[Robyn]

Can't believe that some people have the nerve to say that Dr Mikovits has broken embargo= that is SO LOW, especially spreading the news publicly on co-cure and especially on the week of WPI opening and celebrations.

Blows my mind.

I fully agree with you on this Kati.

 

[akrasia]

Can't believe that some people have the nerve to say that Dr Mikovits has broken embargo= that is SO LOW, especially spreading the news publicly on co-cure and especially on the week of WPI opening and celebrations.

Blows my mind.

I think there's still a tendency on the part of some to see the WPI as maladroit if not actually transgressive and to discount the kind of cognitive inertia it has been up against.

Judy is no naf and neither is Annette. Breaking through the massive prejudice both against us as a group and the career and institutional investments in the status quo takes a great deal of guts and steadfastness, a resolve not to succumb to the "whisper campaign" waged by small minds.

We haven't begun to appreciate our good fortune by having someone so dedicated to finding treatment heading the research at the WPI. Ila Singh, for all of her considerable virtues, merely inverted the argument that McClure made: patients are using ARVs so we should evolve a good protocol. For Judy, who viewed the negative studies as attempts to sabotage treatment initiatives, trials should have happened in the immediate wake of the Science paper because people were SUFFERING, and no one should suffer a moment longer than is absolutely necessary.

 

[Megan]

Though I got involved in this embargo debate, I agree with others that the debate needs to move on from this issue. Cort has already conceded the point a couple of times. The real story here is a good one.

I particularly find Dr. Mikovits comments about their further studies on how XMRV affects the immune system to be very encouraging and obviously the positive references to treatments. What I find most uplifting is that they are just getting on and doing it while many others are saying it will all take so long et etc.

I have been concerned at times with WPI public relations issues, but on balance I feel that the tsunami of scientific interest that the WPI have generated may prove to have been the most essential strategy to overcome the mountain of resistance they have faced. If this has required the throwing of a few pencils in class, then so be it.

 

[George]

Two diffrent papers according to Frank Russeti. NIH paper to be published in PNAS likely today or the 24th. Judy referenced the FDA paper in September, likely after the symposiums. Makes sense.

 

[Sasha]

Two diffrent papers according to Frank Russeti. NIH paper to be published in PNAS likely today or the 24th. Judy referenced the FDA paper in September, likely after the symposiums. Makes sense.

Two different papers? I had thought the Alter thing was a joint NIH/FDA thing so would be a single study and a single paper in PNAS. Have I been blind? So still some hope for something today in PNAS?

Totally baffled now!

 

[alex3619]

Hi Stone, Tanias comments that you had a problem with were clearly satirical - one of the humour threads was based on this topic. Bye, Alex

 

[jimbob]

I'm with sasha, is there really 2 papers??????

 

[Robyn]

Regardless of what anyone wants to say Annette Whittemore, Dr. Judy Mikovits and all involved with WPI are hero's to the ME/CFS community.

 

[xrayspex]

Me too------2 papers??? I thought it was a joint effort, cool either way as long as both positive.