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

[Eric Johnson from I&I]

New article up on google news. It's in a dutch paper which is one of the few dutch dailies. No new info in it apparently. But I'm hoping there will be a lot of articles, so NIH will be more likely to announce something, and maybe the paper preprint will come out.

 

[Trooper]

Great news, thanks Ortho! When things like this happen, like the original science paper, I have to pinch myself.

It is going in the right direction and even if none of this pans out (arrgh!!) I love having the feeling of hope.


This news will keep me smiling for days :Retro smile:

 

[bullybeef]

Does anyone know what HIV-X is? It is mention on the Alter's word doc as the 'next really bad one'! Don't tell me it's HIV+XMRV?

 

[pollycbr125]

Does anyone know what HIV-X is? It is mention on the Alter's word doc as the 'next really bad one'! Don't tell me it's HIV+XMRV?

could well be and tbh i wouldnt be suprised if there were HIV pos folk who had also contracted XMRV

 

[taniaaust1]

This could be really serious and certainly not something we wish to have.. A Retrovirus just like AIDS and that leukemia one is.. the only other two retroviruses us humans have (from what ive read). This is serious guys.. very very serious.. what if it's found to spread by unprotected sex just like AIDS does .. Just imagine how those who want to have sex and procreate will feel if it turns out we can give a dangerous virus to our closest loved ones by sex.. (just like those with AIDS).

This could affect any of us who ever planned to have children.. esp since its a retrovirus.. therefore affecting our very DNA!!! Hence we could be treated but maybe not cured!! (just like AIDS)

It may turn out .. that we all here very very regret that we've been found to have this..

I hope the news is good news.. but it just may not be.

Im excited if this means that maybe we will be taken more seriously (hahaha Wesley..i've awaited the day for him to get egg on his face) ....but im really dreading what this could mean for us all.

 

[bullybeef]

If you haven't had a look at the other documents for the Zagreb conference, check out this one: http://www.sanquin.nl/ipfa/Upcoming...cc818c125706600483652!OpenDocument&AutoFramed

 

[bullybeef]

XMRV: Scenarios for the future - page 37
•Completely unknown and essentially unpredictable
•Range from irrelevant to doomsday
•Irrelevant
–Contamination, cross-reactivity, “normal viral flora”
–Possible models are TTV/SEN-V, HGV/GBV-C, SFV
•Doomsday:
–Virus causes dread disease(s)
–Extended incubation period
–Spreads rapidly via common routes
–Is already widespread
–(Perhaps after viral mutation event)

 

[natasa778]

Nobody welcomed Dr Gert Schuitemaker to the forums, that I saw, or thanked him for his confirmation, where are your manners people? Welcome Gert:

Welcome Gert! And THANK YOU!!!

 

[Daffodil]

heh i felt bad for using the C word and asked ERV to delete my comment.

i'm such a wuss lmao

 

[Alexia]

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.

Hartelijk bedankt Gert!

 

[ukme]

Just been up to tell my daughter, had a hug, afew tears and so now on to fingers crossed that something will at last come of this and attitudes will finally change.

 

[sproggle]

Just been up to tell my daughter, had a hug, afew tears and so now on to fingers crossed that something will at last come of this and attitudes will finally change.

Welling up here, not had the chance to let my family know yet...

 

[akrasia]

I'm sure Judy and Annette do not watch the Facebook page. What strains credulity is the idea that Andrea consults with them every time she makes a post. Judy and Annette have better things to do than sit around on Facebook or give Andrea "permission" to post news articles.

Linking to a news story on another site that contains leaked information is not the same as leaking it yourself. WPI did not leak anything. They linked to a news story not only on another site but in another country!

Exactly. I shouldn't have called it a leak. I have NO PROBLEM with their linking to the ORTHO article. I just don't believe that something of this magnitude would have gone out without someone besides Andrea knowing. Again, it was not meant as a criticism.

 

[sproggle]

In my ME/CFS haze I hadn't noticed the arrival of the Doc

Big thanks to Gert!! &sorry for our bad manners but we are all rather emotional &of course brainfogged! :tongue:

Thanks from all of us

 

[Min]

many thanks for the information Gert

 

[Esther12]

Personally, I'm going to keep quiet about this until we get some official news.

This sounds like massive news, but I don't want to get too caught up in the excitement. Maybe the review of the CDC's, NIH, etc, etc studies will come down on the side of the negative CDC's work?

At this point, I'm really hopeful. It would be very strange for two entirely independent blinded studies to show a strong correlation between CFS and XMRV without that holding up... but I'm willing to wait for official news. It sounds like it will be coming soon.

 

[coxy]

I'm with you Esther12, i'm keeping quiet until it's all confirmed. Not to sure what i'm going to say anyway at this point, maybe best to keep quiet other than to immediate family even if this all goes according to plan for us.

 

[moonchild]

This could be really serious and certainly not something we wish to have.. A Retrovirus just like AIDS and that leukemia one is.. the only other two retroviruses us humans have (from what ive read). This is serious guys.. very very serious.. what if it's found to spread by unprotected sex just like AIDS does .. Just imagine how those who want to have sex and procreate will feel if it turns out we can give a dangerous virus to our closest loved ones by sex.. (just like those with AIDS).

This could affect any of us who ever planned to have children.. esp since its a retrovirus.. therefore affecting our very DNA!!! Hence we could be treated but maybe not cured!! (just like AIDS)

It may turn out .. that we all here very very regret that we've been found to have this..

I hope the news is good news.. but it just may not be.

Im excited if this means that maybe we will be taken more seriously (hahaha Wesley..i've awaited the day for him to get egg on his face) ....but im really dreading what this could mean for us all.

i had so many of these feelings and thoughts when the science paper came out and it still scares me how serious it is (even though i know at another level how serious this illness is) and the implications for having children, the stigma if it is tranmitted sexually etc etc. i do think that the AIDS epidemic has broken down some of that and if it's a path we end up on things will be easier in some ways simply because of what has gone before. i'm terrified, and yet i'm at the point now where i just want the truth - whatever it is. truth, hope and a light at the end of the tunnel...

 

[dsdmom]

This could be really serious and certainly not something we wish to have.. A Retrovirus just like AIDS and that leukemia one is.. the only other two retroviruses us humans have (from what ive read). This is serious guys.. very very serious.. what if it's found to spread by unprotected sex just like AIDS does .. Just imagine how those who want to have sex and procreate will feel if it turns out we can give a dangerous virus to our closest loved ones by sex.. (just like those with AIDS).

This could affect any of us who ever planned to have children.. esp since its a retrovirus.. therefore affecting our very DNA!!! Hence we could be treated but maybe not cured!! (just like AIDS)

It may turn out .. that we all here very very regret that we've been found to have this..

I hope the news is good news.. but it just may not be.

Im excited if this means that maybe we will be taken more seriously (hahaha Wesley..i've awaited the day for him to get egg on his face) ....but im really dreading what this could mean for us all.

I know what you mean - I was talking to my husband about this last night. On the one hand I was so very excited and on the other I don't want a retrovirus. I don't want to have given this to my husband and possibly my daughter. I don't want to be stigmatized. I honestly don't know that I will go around shouting that I have XMRV because people are bound to be worried about being around you. And god forbid I passed it on to my daughter. I don't want people scared to be around her. And what if they find out it is transmissible in bronchial secretions? Great..so my daughter would have to wear a mask to school? Now, let me say that she is only 3, but I already worry about what her life would be like if she had a sexually transmittable disease. How terrible for her when it's not her fault at all. Of course I am getting way ahead of myself but this is where my brain goes...

 

[Angela Kennedy]

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

Hi ixchelkali,

Actually, that was the point I was trying to make. The amount of uncertainty in HIV-AIDS research alone makes the idea that "one can ONLY say cause is PROVEN when treatment is PROVEN" untenable. I note only 3 of Koch's postulates are fulfilled in the example you gave - there are four?- and that even achieving this took YEARS, as you say.

However, people suspected to have such were not left for years and year to rot while the alleged super-duper- beyond- any- doubt- PROOF of causation was established BEYOND DOUBT. And even now there are HIV + people who have not yet developed AIDS, whether due to prophylactic treatment or other reasons (and this is similar to XMRV+ 'normals', is it not?): indicating PROOF BEYOND DOUBT is not yet forthcoming, even in the HIV-AIDS connection. But this has not stopped people getting treatment and care and being taken seriously, instead of being told to think themselves better.

Ironically, the derogatory term 'denialist' - whereby people who doubt the HIV/AIDS link are castigated- could, technically, apply to those denying the XMRV/CFS connection now, yet it is not. Why not? (Rhetorical question)

Now I'm certainly not an AIDS 'denialist'. However, there will have been people who DID legitimately ('scientifically'?) question the causation certainly at the beginning of the 'epidemic'. At what point did rational scepticism become 'denialism', at least in the eyes of others? At what point will this happen with the XMRV-CFS connection, if ever?

I'm saying this not because I truly believe XMRV is THE causative agent of 'CFS' (there are so many other issues involved, not least other possible micro-organisms let alone the discrepant criteria of 'CFS), but because of how a HIGHLY uncertain, mostly implausible, default psychogenic explanation for uncertain somatic illnesses has become accepted uncritically by medics and the state while we wait for the 'science' to sort out the issue of XMRV.

And don't even get me started on the wasteful loss of animal life, and slowing down of progress, while scientists try to compare penguins and ostriches on 'animal models' of 'CFS': they can't even agree a decent RESEARCH criteria of HUMAN 'CFS' (if we take various excuses about not using the Canadian criteria in research at face value). Some scientists claim to establish animal models of chronic fatigue/CFS by exhausting mice! HOW are they going to establish a diagnosis of 'CFS' in some poor monkey? Why don't they just work on what they've got in human populations?

Sorry- rant over. I just find some of the appeals to 'science' and its presumed authority problematic. We've got serious abuse of science going on, and patients are being left to rot. I hope the latest news is positive. I just don't think the facts are going to get in the way of continuing ideologically informed mistreatment of a vulnerable population, while pious platitudes about waiting for the SCIENCE and PROOF (I'm not talking about forum members - just the whole reporting thing, blogs, certain other 'scientists' pronouncements etc.) which may never be quite enough (because in 'science' things rarely are).