XMRV Article in Chicago Tribune and other papers

[jeffrez]

Mr Kite.

Dr Coffin postulated XMRV is only around 40 years old.

CFS affects at least 10x the amount of people compared to the HIV epidemic.

There's the epidemic for 'ya.

If you believe it's irresponsible that people with unexplained symptoms of pain/immune activation & supression & extreme physical and cognitive fatigue that are shared by people with a new human retrovirus - shouldn't consider too if they have this life long incurable virus, then that is for you to think.

Most people who care if they are infected with only the third exogenous human retrovirus in the world, however, would probably want to know rather than ignore something that could kill them or their family in later life.

All human exogenous retroviruses cause neuro immune disease, immune supression and cancer.

ME (re-labelled as CFS/Hysteria by military Psychiatrists) is a neuro immune disease with immune supression (NKC dysfunction) and increased rates of cancers reported in patients, and heart failure also.

If one is aware of the huge amount of research into CFS, It's illogical not to link a newly discovered human exogenous retovirus, to a disease where 98% of patients test positive with CFS, and where other people around the globe also test positive in 25x less numbers, and where cancer patients test positive, and where immune supressed patients in germany test positive.

Sensibility is rarely foolish.

I thus got tested for XMRV, and found out the truth.

I am no longer a puppet of the psychiatric industry with 'CFS' - but a victim of a mouse derived virus that somehow entered my blood stream without prior notice given. By total chance, I also have all the hallmarks of what retroviruses do to people, and also have XMRV - which by some is being touted as possibly harmless. Think about it.

None of that is really relevant, I'm afraid, to the point of the excessively hysterical approach taken by Mikovits, which benefits no one.

 

[V99]

Dr Coffin postulated XMRV is only around 40 years old.

I think he said this at the CFSAC meeting.

 

[jeffrez]

Really?

That's pretty different from what I've heard people say. Can you remember where you read that? It would be interesting to see. Ta.



I agree with a lot of Kite's concerns, but I also think he's been a bit unfair in taking Mikovit's quotes at face value. We all know how journalists are pushing to make a story seem as dramatic as possible. It does seem that Mikovits is poor at restraining herself, and often gives them tasty quotes to take out of context, but when I've seen/read her speak at length she seems to add in the provisos and notes of caution that are so important.

The fact this keeps happening is a problem though, and I worry that some of the WPI's keener supporters are egging them on to behave in a counter-productive manner.

I believe most of the quotes came directly from her emails. If anything, one would expect more restraint there than when just talking off the cuff to a reporter. In any case, it doesn't really reflect well imo on the state of her research.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[serenity]

again i said AIDS Africa, but i'm not gettin somethin i guess. as i sit in my very comfortable air conditioned home with my dishwasher going & a computer at my disposal, a TV a car to get to doc appts (inadequate as they may be), a Roomba - haha, clothes, all the food i need, etc. i just dont' see how i have it worse than those in Africa.
& yes, i am here - i get to live to fight another day. i get a teeny bit of hope. i dont' have to leave my husband & family & children (cats - ha! ) & friends just yet.
that is no small thing.

 

[V99]

Coffin quotes.

Transmission

We have no idea what the mode of transmission is, despite some things you may have read and in my opinion we just dont know. The ability to easily isolate the virus from blood cells and from blood certainly implies that transmission could be blood borne. Beyond that I havent a guess as to what its being transmitted by. Bodily fluids? Its probably not transmitted in aerosols. These viruses are not very transmissible that way in general, but we dont know that for sure for this virus. And we dont know the origin of this virus.

Comparing XMRV to HIV

I just want to make an analogy. Lots of patients with HIV feel better when theyre given anti-herpes virus drugs or anti-pneumocystis drugs or anti-other drugs. The critical issue is: what is the real trigger for this disease? It may well be that herpes viruses, EBV and so on, are intimately involved in the pathophysiology of the disease, but are not necessarily causal to the disease, but are important as opportunistic infections as in the case of HIV. Hardly anybody dies of HIV infection, they die of opportunistic infections, cancers and things like that which are caused by the viruses. I think one has to start in a sense at a simple level, try to establish the role of this one specific agent and then work up to exactly the sort of pathophysiological issues that youre getting into.

and

I I dont think theres any prejudice against working on this virus because of the disease. I mean this is a disease which affects a minimum, I suppose, of a million people and its as many people as are infected by HIV and there may be many, many more infected with this virus than are infected with HIV. Everybody recognizes this is potentially extraordinary importance and everybody wants a piece of the action in a sense. I mean scientists like to discover things and it looks like there is fertile ground for discovery here.

and

Well now we need to know something about patpathogensis to understand whether that works. I mean one way to learn about the pathogenesis as weve learned from HIV is in a controlled trial situation, not you know borrowing your friends drugs or something like that. We know there are some antivirals that work against XMRV in the laboratory. Thats been done, there was a presentation at the same meeting in May about that. Actually you may not know that AZT was first discovered by Burrows-Welcome using the closely related Murine Leukemia Virus as a model. That was the means of discovery. There are already retroviralspan> th that work against this, so that those could be used in a trial, not necessarily a treatment trial but a trial just to see what the pathogenic mechanisms of the virus is.

Potential to cause disease

So the other striking thing is the very close relationship of this virus to xenotropic MLV an endogenous virus of inbred mice. As was noted the pathogenicity of xenotropic MLV has not been studied in mice, for an obvious reason, and that is this virus does not infect mice. But closely related viruses have been very important pathogenic models in virology for cancer, for immunodeficiency disease and for a variety of neurological diseases. So the potential pathogenicity of this virus at least in a host that it can infect should not be underestimated.

 

[V99]

I'm sure she was talking about the number of people with XMRV, and how many diseases in could be implicated. That would dwarf HIV, if proven to be the case.

 

[V99]

Have a look at this, 4mins onward.
[video=youtube;4Q0fGfnfx8o]http://www.youtube.com/watch?v=4Q0fGfnfx8o[/video]

 

[serenity]

yeh i did hear ya V99, sorry i meant to say i hear ya & i can agree that is maybe what she meant.

 

[kurt]

MODERATOR - everyone please keep the discussion, debate, and disagreement at a civil level appropriate for the forum.

It is unrealistic to expect we will all have the same opinions and improbable we will change one another's views with strongly-worded posts. There are some clearly valid points being made here, I think on both sides, but let's make them diplomatically please.

 

[Forbin]

Great moments in science reportage...[NYT retracts Goddard editorial 49 years later]

...it would be nice to know how Goddard did after that in terms of funding for his research?

I dont know about anyone else but I dont have another 49 years

What happened to Goddard perhaps provides a lesson for today. During the 1920's Goddard's theories were the subject of much public ridicule (not just from the New York Times). Goddard was retiring and rarely took on his public critics. As a result, he found it difficult to get funding for his research and he had to run his rocket tests on a shoestring. When he did get some funding from the Guggenheim Foundation in the 1930's, he took his research to Roswell, New Mexico - both for safety reasons and so he could work far away from public scrutiny. He worked there in relative obscurity (although his earlier work had been well-studied by German scientists). In fact, his work was so unappreciated that, by the time of the outbreak of WWII, the US military saw little value in rockets as weapons. Meanwhile, by the end of the war, Germany had developed the V2.

The moral of the story seem to be “Take on your critics. Don’t hide your light under a bushel. If you don't show that you believe in yourself, why should anyone else believe in you?”

I think we are actually very lucky to have someone with this type of personality in Dr. Mikovits. A lot of other researchers would no doubt wither under the type of criticism she’s come up against. Yes, she may ruffle some feathers (heavens!), but if you don’t want to get into the arena and fight for your ideas you can expect to wait 49 years until they become commonplace. Then you'll get the retraction - - - in Goddard's case, 24 years after his death.

“Every vision is a joke until the first man accomplishes it; once realized, it becomes commonplace.”​

-Robert Goddard​

 

[V99]

Here's Goff take again, from CROI.
[video=youtube;R3f9MPfIpls]http://www.youtube.com/watch?v=R3f9MPfIpls[/video]

 

[V99]

The public absolutely noticed the H1N1 scare. I

But did they notice the epidemic, most seem to think the whole thing was an overreaction, and that the epidemic did not take place.

 

[jeffrez]

But did they notice the epidemic, most seem to think the whole thing was an overreaction, and that the epidemic did not take place.

Yes, they noticed it. It (i.e., the media focus) mostly did seem to be an overreaction, maybe one reason why no one is getting too concerned now about XMRV. So you see, overreaction only tends to harm credibility in the long run.

 

[dannybex]

I don't need to read it again, it's clear from even the very first reading that she is trying to stir up fear to further her research agenda. She as much as admitted that when she said presenting at the autism conference was her "last resort" (desperation), and that, in her words, "unless we do something now this could be the worst epidemic in U.S. history. Our continent will be like HIV Africa only worse!"

"Unless we do something NOW." Complete with exclamation points. The implication is that we don't have an epidemic now, but that if we don't ACT NOW! we might have one. If that's not designed to stir up fear, I don't know what is.

The public absolutely noticed the H1N1 scare. It was front and center on the news like every night for weeks, there were shortages of vaccines causing all kinds of grief, and the CDC/WHO and/or others were talking about a massive pandemic. That didn't really pan out, either, and so the public attention drifted to other things. And that's a flu virus that by all accounts is easily communicable, and that actually killed a number of people. XMRV is a completely different agent with a completely different profile.

I guess I'm going to be the odd man out here again, as I agree with much of what Mr. Kite says, and echo Serenity's concerns, but also agree with some of the other comments. Lots of good points made.

I respect Dr. Mikovits as much as anyone here, but I think that perhaps sometimes her passion sometimes gets a little overheated at times. I'm glad she's passionate about CFS/ME, but I think it might sometimes backfire if she doesn't choose her words more carefully. I hope it doesn't...but it could.

Alex had a point where he said that (paraphrasing) XMRV is hard to catch, not like the flu, so comparing it to the overblown media coverage of the H1N1 flu of last year (that was potentially supposed to kill possibly millions) doesn't really ring true for me as well. If it could be called an 'epidemic', it's definitely not in that same boat, especially regarding the public's perception.

Comparing it to the HIV epidemic also doesn't seem right to me, for the reasons Mr. Kite has mentioned, but also because of comments that I believe came from the WPI and others (and also perhaps Gerwyn?) that XMRV replicates very slowly and in different tissues/cells than HIV.

I agree with Esther when she said that while perhaps some of Mikovits quotes were rearranged, nevertheless, "it was a bad idea to provide quotes like those which could be taken out of context." Personally, I think it didn't help her or the WPI, to send those emails.

Natassa: "If 4-6% of the general population is already infected, how will anyone know that they are not (and be a bully) before they get tested... Also that high percentage of infected population makes it clear that everyone CAN get infected and that it is in everyone's interest that a vaccine and treatments are found asap."

Good points, but this to me again suggests that it may not be the 'puppet master', that perhaps genetics, or other factors/triggers (probably multiple) may be involved. But it also means that every single person, healthy or not, would need to be tested for XMRV, before giving blood. That won't happen until there's solid proof that it causes disease in the vast majority of those with XRMV.

Dysatonomia: "CFS affects at least 10x the amount of people compared to the HIV epidemic."

You're a lot smarter than me, but I'm curious where you obtained this statistic (for reference).

"If one is aware of the huge amount of research into CFS (which I am), It's illogical not to link a newly discovered human exogenous retrovirus, to a disease where 98% of patients test positive with CFS, and where other healthy people around the globe also test positive in 25x less numbers..."

It was my understanding that roughly 10x more healthy people in the US (extrapolating the 3.7% stat in the Science study) tested positive (10-12 million healthy folks in the US population compared to 1-2 million estimated ME/CFS patients).

And finally, I don't understand your final statement:

"No one is coming to our rescue. Now I know why."

Aren't there dozens of studies going on now around the world? Or at least a dozen?

And lastly, what about the DeFreitas retrovirus? If that was indeed such an important finding as conveyed by Hillary Johnson for decades, etc., and we know that the WPI says XMRV is not the same retrovirus, why isn't ANYONE, including the WPI, following up on Elaine's work and trying to replicate her findings? For all we know it could be just as important as XMRV...

ETA Forbin's comment: "The moral of the story seem to be “Take on your critics. Don’t hide your light under a bushel. If you don't show that you believe in yourself, why should anyone else believe in you?”

Good point.

 

[DysautonomiaXMRV]

Hi Danny B. Well.... I can't possibly be smarter than you or anyone on here as I never finished school as I was washed up with this illness by age 16. Additionally I would imagine I am at the lower end of intelligence compared to many people on this forum who are far more capable in all areas of their lives. In my defence though, before my illness - I was quite normal (allegedly) and could still remember how to spell. I read a post by someone the other day calling themselves (in some ways) a child due to being incarcerated in their homes for decades. I am a teenager too really. Just an unfinished adolescent - now looking more like Mr Burns from the Simpsons (with the same knowledge of current fashion trends) instead of what I did look like - Paul, from The Wonder Years. So... jaded and yellow it is.

The 10x HIV figure? This is from comparing the number of people diagnosed with HIV with the numbers of CFS. (The numbers are 10 fold in CFS). I know in the UK, this is the figure.

I said no one is coming to our rescue as no XMRV replication study has been proposed by the CDC, never mind funded or started, also as for me this started near 20 years ago, if not before. Approaching a year on from XMRV this is somewhat bizarre I feel. (Considering the huge furore over what happened with the CDC ignoring HIV for 2 years), it would seem a big mistake to repeat this again. I additionally made that comment, as in my country they have announced XMRV doesn't exist. (This is not really a hopeful statement in terms of being rescued!!!!!). Lastly, my doctor recently visited my home and told me not to talk about XMRV now I am positive, and instead tried to sell me CBT. She smarted when I had the bravery to ask her.. ''CBT for retrovirus''?

Elaine DeFreitas should answer (if she can speak) those questions you ask. I have no idea why no one takes an interest in her work!!! I'm just a lonely high-maintenance blob in my bedroom on a laptop who knows and can influence nobody other than impersonating my dead cat's ability to get in people's way and increase the food bill.

Why the CDC said they ''can't afford the plane ticket'' to visit Elaine DeFrietas I would love to know, it's somewhat of a put down - or the spokesperson has aerophobia.

Maybe someone in the USA can interview her one day? The furthest I can travel is my bathroom unfortunately, and not Club Class!

 

[justinreilly]

when i spoke to coffin (and included that talk/Q&A on this forum) i felt he was very sympathetic towards people with CFS and very eager to get to the bottom of xmrv, and working very hard at an assay to ID it with the NCI folks (the rusetti's) (sp?). he also mentioned, when we talked, that contamination could be an issue. but he was not taking sides. the reason he was very hesitant about in having me post my talk with him on this forum (which he eventually agreed to) was because he said he is often misquoted or the press stressed the wrong parts of his statements. etc. something i find happens ALL THE TIME when i talk to the press about my own work (not related to CFS). i have been interviewed many many times by the press and only once did they get my statements right. and that was because the reporter asked to tape record our conversation.

so never believe any quote you read in the press. literally. not coffins or judy m's.

Agreed! The quotes sound like she was trying to put words in their mouths and then got their responses- agreeing, kind of agreeing or cedeing a point and then made it sound like they were coming out asserting that view, especially with Coffin. (Dr. M does sometimes say things that can be blown up and taken out of context to make her seem unreasonable imo).

 

[V99]

Mr.Kite

Yes, they noticed it. It (i.e., the media focus) mostly did seem to be an overreaction, maybe one reason why no one is getting too concerned now about XMRV. So you see, overreaction only tends to harm credibility in the long run.

So the WHO overreacted, when the last time this happen about 50million people died?

Look, everyone has a different opinion on how to go about getting important information about CFS, and its association with XMRV, out into the word. That's fine. However, referring to Mikovits as hysterical is out of order, especially when her comments are echoed by leading retrovirologist's.

 

[jeffrez]

Mr.Kite


So the WHO overreacted, when the last time this happen about 50million people died?

Look, everyone has a different opinion on how to go about getting important information about CFS, and its association with XMRV, out into the word. That's fine. However, referring to Mikovits as hysterical is out of order, especially when her comments are echoed by leading retrovirologist's.

No, I said the media overreacted. But it's possible that WHO overreacted, also. 50 million people didn't die from H1N1, did they?

Mikovits' comments were a little bit hysterical, in my estimation. I'm sure that conclusion is shared by many in the scientific and research communities. Sorry that you think otherwise and can't seem to let it go.

 

[V99]

I said 50 million the last time. As for the media, well it depended on which media you watched/read.

Sorry that you think otherwise and can't seem to let it go.

Other people have posted on here also, if they add a comment today or tomorrow, or in another week, will you say this. Sorry, but your use of the word hysterical is only being used to demean and mock.