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

Mark

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For those who missed the crucial link that proves this leak is completely reliable:
http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/Web%20Body?OpenFrameSet&Frame=Body&Src=%2Fipfa%2FUpcoming_Events.nsf%2F0%2Fcbfb86b6bbdcc818c125706600483652!OpenDocument%26AutoFramed

I don't know whether they intended these Workshop notes to be publicly available, but at the time of writing, they are...perhaps worth mirroring...

All the info in the newswire seems to come from a slide in presentation 4-1 (which is fascinating). Doubters of the veracity of the leak need to theorise that this whole conference and the slides in the PDFs are another part of the Great WPI Swindle. Tips on the construction of wild conspiracy theories are available to remaining WPI-sceptics on request. :D

Some interesting quotes in the presentation, to be handled with care since some of them are not saying quite what one may at first assume, and interpretations of the last slide should be interesting...

I think this bit is a fundamental cautionary note suggesting to us what the next step has to be:

Perception: Everyone wants better, safer blood

Reality: No one wants to take a risk or incur the cost of new approaches to achieve this in the absence of either a crisis or a major push by the healthcare community or public at large.

Perception can become reality only if costs are low.
XMRV is still not near top of the agenda, perhaps we can all explain to the president why it should be (retroviruses are not mere viruses; inheritance of genetic defects; potential to cause lifelong debilitating illnesses with no known cure or treatment, global economic costs counted in trillions of dollars of losses already, 500 million affected, etc etc etc)


I seem to remember we got that 500 million estimate on record a few weeks ago Alex, we are looking damn close. :D God i hate being right...not. :D


Nobody welcomed Dr Gert Schuitemaker to the forums, that I saw, or thanked him for his confirmation, where are your manners people? :D Welcome Gert: I absolutely love this little quote to pieces, you are so right:
"Dr Schuitemaker believes we must first look at how we can help the patient through nutrition and supplementation before any type of medical treatment begins."
http://www.foodmatters.tv/_webapp/the teachers
I hope you'll stick around and share more with us here Gert, I'm sure that would be very valuable for everyone.



@cfs_since_1998: "What do they mean by related MLVs?" - There are minimum 6 known strains of XMRV, they have obviously branched further out on the phylogenetic tree of XMRV since then, and the related MLVs are not actually XMRV but part of the family. It also means: Lots of different types of us, lots of detail, there are differences between us but we are all connected; against everyone's expectations, the wastebasket has a lowest common denominator after all.

Esther12: "There are lots of things about the WPI which are kind of.. yeah. If their results get validated I couldn't care less though."
Any change to your percentage estimate based on this news Esther? As you know, I think all those 'you're-not-quite-playing-by-the-rules what's-the-big-hurry' things about the WPI are more kind of YEAH!!! Actually, there are a whole lot of things about the prepared minds of the WPI that are kind of YEAH!!! When the replication of their results is published, maybe all those of us who didn't make the historic breakthrough that finally cracked ME/CFS will wonder whether there may be at least a little method to their madness after all. Conceivably they may be right about a few other things too, having got a year or two's head start...

@Mr Kite:
"
I know if I went to any doctor with this information, they would still say the same thing: that there's nothing they can do because there is still no proof that XMRV causes CFS. Which is true. Then they would continue implying it was some kind of psychological malady or defect."
I didn't get where I am today by trusting doctors Mr Kite. :D Just because they say stuff doesn't mean you have to respect it. The point about non-mathematical "proof" being subject to interpretation is correct. This is not about proof, but about truth. The evidence is overwhelming. The ME/CFS literature has been begging the question as to why our T and NK cells are malfunctioning for some years, so a retrovirus known to selectively infect those cells and subvert their functioning sounds like a considerably more likely explanation for that behaviour than cosmic rays to me. Immune dysfunction is what retroviruses do. Immune dysfunction is what we have. XMRV infects the precise cells that are damaged in us. Occam's Razor does the rest.

Otis: "
I've always felt that mentally that I felt that if I knew what I was fighting it would be part of the equation to getting better. Of course I didn't imagine it might be in my DNA...". Really, did that never occur to you? I have assumed that for several years, ever since one of Dr Myhill's associates explained that the root cause of my vitamin deficiencies lies in corrupted DNA, and showed me how it all traces back through the biochemistry. I have known my DNA is screwed up for many years, and that I am probably infectious. That's why the immune vulnerabilities never actually go away even when you've learned to recognise and manage them. Yes you are right, knowing what you are fighting definitely does help you to get better. :Retro smile:

Koan: You know what, there might just be something in this XMRV business after all...;):D

Elliot: Loving to see you getting over-excited at last! :D

sproggle: Cool to see you around, have Panorama phoned yet? :D

@Wessely: Thinking more seriously about cells lately? ;) :eek::eek::eek: :tear::tear::tear:

XAND: :victory::victory::victory: :hug:
 

Doogle

Senior Member
Messages
200
I know if I went to any doctor with this information, they would still say the same thing: that there's nothing they can do because there is still no proof that XMRV causes CFS. Which is true. Then they would continue implying it was some kind of psychological malady or defect.

Mr Kite, you may be going to the wrong doctors. One of my telephone contacts just told me last week he went to a doctor that specializes in AIDS treatment (a major player) for the first time to discuss XRMR and anti-retrovial treatment for ME/CFS. The doctor was well aware of XMRV and the three AVRs that have been proposed for treatment. The doctor said he would have no problem treating the person with the AVRs because he has believed ME/CFS was caused by a retrovirus for a long time. The doctor doesn't want his name mentioned because he knows he would be swamped with calls. Some doctors are out there and they're ready for us.
 

ixchelkali

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Long Beach, CA
Let the research begin!

Oh. Wow. :balloons::victory::tear::balloons::victory::tear::balloons:
This would be the day I'm late to the party.

First I'm all goosebumps, then tears of relief, then laughing, then goosebumps again... I have postponed getting excited until the WPI study was replicated, so I guess that means I can get excited now!

William Reeves:
We and others are looking at our own specimens and trying to confirm it, he said. If we validate it, great. My expectation is that we will not.
Neener, neener, neener!
I'll bet that's why the CDC cancelled their press conference. I'll bet they didn't find it, as planned and predicted, but once they found out the NIH and the FDA found it, they'd look like incompetents if they couldn't.:D

NOW maybe we can at last stop having to prove that ME/CFS is real, and get started on some real research. Prevelence, transmission, epidemiology. And yes, eventually, treatments. I expect it will take a long time, and we still may have to convince people that it's a serious disease (Headline: Is a virus making you tired?), but I think now it will start.

The authorities are going to be trying not to panic the public, but I think some panic may be in order.

Ooooo, it's going to be a long few days waiting to see the papers! Based on Hillary Johnson's comment ("The paper is currently in press at a highly respected journal.") I'm thinking it must be Science or Lancet, what do you think?

To eliminate all doubts: today ORTHO got the confirmation from dr. Harvey Alter and from dr. Judy Mikovits, both by telephone. Publication of the paper is just a matter of time.

Thank you for letting us know, Gert. Nice of you to post here.

I'm not feeling very good today, so if this comment is redundant or just super obvious pardon me, but did anyone else notice on slide 27 (the 1st un-numbered slide towards the end of the presentation) that it lists XMRV as a prioritized EID threat as of August 2009 and also says "The only barriers to rapid development and implementation of such diagnostic testing capabilities are regulatory, not technical." Regulatory, not technical??!!
I think he's talking about the barriers to using the RPM-EID chip by TessArray to test donor blood for all those pathogens in one fell swoop. It seems like the major point of his presentation was argue for the benefits of using that chip. XMRV was just a side comment.


:sleepy: Oy, I need to go to bed, but it's going to be hard to settle down to sleep.
 

Angela Kennedy

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Essex, UK
afaik there is no proof that smoking causes lung cancer - a very strong correlation but no proof - pretty sure the correlation isnt 98% either (ie that 98% of people that smoke get lung cancer)

proof is a subjective term outside of mathematics

Those are very good points. Actually, they'res pretty crucial.

There are other conditions for who this applies I believe. Even HIV- AIDS?

And yes- 'proof' is very rare outside of mathematics.
 

Mark

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Sofa, UK
In the blink of an eye you finally see the light

I'd like to propose this as the soundtrack to a video thanking our angels of mercy once again (that video's another job I still haven't got round to...:D):
http://www.youtube.com/watch?v=0RbeszkHT48

Fond memories of when we lived through these same feelings together back in November, discussed the value of Hope, and looked together towards the horizon at the slowly spreading dawn:
http://www.forums.aboutmecfs.org/showthread.php?1216-How-Did-You-Feel&highlight=feel
 

acer2000

Senior Member
Messages
821
Regarding the "WPI" facebook and twitter feeds...

I think that if Andrea is excited about this stuff she should probably post these links as Andrea (or have a friend post it), and not the WPI unless the WPI feels its beneficial to their public image or the scientific mission to post under an official account. Posts like a link to this leaked info (before the paper is out or its validated), or linked to blog posts (not straight scientific news) probably shouldn't be posted from the official WPI account.

Basically, if the WPI doesn't think an article or link is validated enough to post on their real website as a press release or official link in the "news" section - they probably shouldn't be posting it using the official WPI facebook account or twitter account. And when they do post things to facebook or twitter - the links should refer to their real website, and not a comment on facebook itself. The URLs should be shortened and an plain english explanation of the link should be added so people know what they are clicking on.

Thats just my 2 cents anyways.
 

ixchelkali

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Is this actually the situation with HIV and AIDS? Causality 'proven' only after treatment 'proven'?


With HIV and AIDS, they applied "Koch's Postulates":
  1. Epidemiological association: the suspected cause must be strongly associated with the disease.
  2. Isolation: the suspected pathogen can be isolated - and propagated - outside the host.
  3. Transmission pathogenesis: transfer of the suspected pathogen to an uninfected host, man or animal, produces the disease in that host.
The NIH has a webpage giving the evidence that HIV causes AIDS (probably to counter the AID denialists). It gives you an idea of the kind of evidence they look for. Although they announced they had discovered the cause (HIV) in 1984, you'll notice that the evidence accumulated over quite a long time. The studies continued until about 1999.

http://www.niaid.nih.gov/topics/HIVAIDS/Understanding/howHIVCausesAIDS/pages/hivcausesaids.aspx
 

acer2000

Senior Member
Messages
821
i left a nice little message on ERV's blog in which i used the C word. wonder if she will delete it lol

I know where you are coming from on this one... but, please don't. As obnoxious as she is, it doesn't do us any good to visit her blog and stoop to her level. It just boosts her google rating. Science momentum appears to be on our side now with all of these papers coming out... it's not going to matter in the long term what ERV posts on her blog about how silly she thinks people suffering from CFS are.

We'd be better off if we don't comment on her blog - it just encourages her to write more stupid posts.
 

Forbin

Senior Member
Messages
966
We can demand Congressional investigations into the CDC/CFS program and WHY funding for Retrovirus research was killed off in mid 1980's.

I wonder if this would get the attention of the U.S. Congress...

If between 3%-7% of the healthy population of the U.S. is infected with XMRV then, statistically...

Between 3 to 7 U.S. Senators may be infected, and...
Between 13 to 30 members of the U.S. House of Representatives may also be infected by a "novel" retrovirus.
 

Rrrr

Senior Member
Messages
1,591
i think we should all consider thanking Ortho, the magazine that did this investigative journalism and gave us today's (last night's) AMAZING LIFE CHANGING info. i just sent them an email. here is the press release again and Ortho's contact info:

http://www.mmdnewswire.com/xmrv-9040.html

ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail: ortho@orthoeurope.com.
 

bullybeef

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North West, England, UK
Here in the UK, I finally to put my head down at 3am!!! Up at 8am for the school run with the kids (I'll pay for it later on). And England are playing in the World Cup at 2.30pm, and If they win, it'll probably too much for me!!!!

Really, did that never occur to you? I have assumed that for several years, ever since one of Dr Myhill's associates explained that the root cause of my vitamin deficiencies lies in corrupted DNA, and showed me how it all traces back through the biochemistry. I have known my DNA is screwed up for many years, and that I am probably infectious. That's why the immune vulnerabilities never actually go away even when you've learned to recognise and manage them. Yes you are right, knowing what you are fighting definitely does help you to get better. :Retro smile:

Totally agree Mark...I was only diagnosed in 2008, and I believe I could have contracted ME from 6-10 years ago, I been sick with so many weird and wonderful infections during the noughties. But even before the Science paper came out, I used to say to my wife that it really feels that I'm being eaten alive at a cellular level. It makes so much sense.

And I was told I has colitis prior to my ME diagnosis, another condition Dr. M has linked with XMRV!!
 

helsbells

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UK
I am sitting here too nauseous to post any useful comment but i just wanted to say I am here tho, pressing refresh and seeing everyone daring to be optimistic which is really lovely and touching:D
 

pollycbr125

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yorkshire
Gracenote,

My take on it is that it was deliberately linked to on wpi's Facebook page, probably with the consent of of both Annette and Judy, if not Alter himself. They put it out there long enough for it to go"viral" as Tina said and then "pinned" it on Andrea. It really strains credulity that neither Annette nor Judy had any knowledge of it and Andrea, acting alone, informed neither of them.

just to make clear WPI were not the first to post it on their page a facebook user did it was already all over facebook before wpi posted anything .
 

bullybeef

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All the web news relating to this story has been 'sourced' anyway. Doesn't really matter whom reports on it now, as long as they show, or link the original news from the MMD newswire website. That's pretty much what 'going viral' is. All the quotes from Dr. Harvey Alter are there for all to see. The story is completely independent, and I wouldn't be surprised if it has been leaked purposely because the CDC were playing silly beggars again (remember they we at it when before the Science paper came out last year)!
 
Messages
75
Location
Australia
good one tina (about it going viral) - thanks for the laugh!

trying not to get too excited here...it's been such an emotional rollercoaster ride since the first XMRV stuff came out that i don't think i have the energy for any more ups and downs. just hope this is finally what we've all been waiting for (and that it doesn't still leave open the question of this being 'US-based').
 
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