FDA/NIH XMRV paper ON HOLD

glenp

"and this too shall pass"
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Money and their jobs --Those older who have integrity and not fearful of loosing thier jobs will speak out.

Those in fear of their jobs, are younger and have more to loose will not stick their necks out - they have their own families to consider first. Also those who may feal humiliation in realizing that their beliefs may indeed be wrong (a psychiatrist could help them deal with that aspect)

glen
 

George

waitin' fer rabbits
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I imagine that none of them had a clue that the DHHS would step in like this and hold those papers up. I'd love to know if this has ever happened before
Cort, there have been delays of papers which have major public health impact but none so . . ."publicly"!
 

bullybeef

Senior Member
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The use of the term 'conspiracy theory' always interests me, and it has become a bit of a paradox, because for the people whom claim it, the tables are turned, they are then accused of paranoia, and labelled the 'conspiracy theorists'. But all it is a an false truth, or a truth that is withheld; a lie, and we all do it everyday. Keeping a fact quiet to save face, incrimination and punishment, not to mention to maintain a wealthy status are obviously attractive options. The armed forces have been doing it for years, and no one bats an eyelid because as far as national security is concerned, it is a necessary evil.

The CDC have a reason to not want XMRV to be associated with ME, just as the psychiatrist lobby in the UK. They have done things in the past that could put many of them away for years, and XMRV maybe the key to unlock that lie or conspiracy.

But as far as this situation is concerned, if any research group doesn’t find XMRV, wouldn’t it be normal to just suggest that is inconclusive, rather than everyone agrees with it, and they all then pack up and go home?

At this early stage were researchers are still trying to develop different methods to locate the virus, and based upon Dr. Alter’s 3-7% assumption, it should be there in some people, ergo, they must be trying the wrong methods.

As Dr. Mikovits said in an email to me personally, an electron microscope doesn’t lie.
 

Stone

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I have changed the petition to go out to the heads of the NIH, CDC, and FDA as well as elected officials.
I signed this petition and forwarded it to everyone on my email list with an introductory statement from me. I urge everyone to PLEASE do the same. It's a perfectly reasonable petition and is well written and thought out. Please sign it. We are just a bunch of blow-hards if we only speculate and vent on the forums (which is great) but don't take the time to put our words into action and tell the people who most need to hear it. This does not apply to anyone who has already signed the petition or who can not sign it, but only to those who can and should and have not. ;-)
 

alex3619

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possible letter to the Australian Health Minister

Hi

I have a draft letter to send that still needs a lot of rewriting. I thought I might try to get some feedback from the PR community first. If you want, I will make this a separate thread - if you are a moderator, feel free to move this.

I think something similar to this needs to be sent to every government health minister on the planet. A big task, but hey, send it to your local ministers and pass the message along.

We have just had a new PM appointed, I will have to check that the health minister is unchanged and haven't done this yet.

Bye
Alex

The Hon Nicola Roxon MP, Minister for Health and Ageing,

I have sent you two previous emails about the risks from the transmissible retrovirus XMRV. I have requested that you commence planning to deal with this potential pandemic, but that acting on this planning had to wait on the science. The science debate is largely over, the time to act is now. Even if pathogenicity is later disproved, this is not something we can delay acting on.

This email is being sent to every health and shadow health minister in Australia. It is also being sent to selected media outlets and CFS patient information forums. A full list is included at the end, as is a copy of each of my previous two emails. I intend to send a similar updated email after every major new scientific publication. There are at least twenty two studies awaiting publication that I am aware of. Many more studies have commenced.

This action is prompted by the USA DHHS delaying or stopping publication of two important scientific papers on this topic that were about to be published and have passed peer review:

http://news.sciencemag.org/scienceinsider/2010/06/conflicting-papers-on-hold-as-xm.html

This science insider article is a preview of the upcoming longer article in Science.

Just to recap the science, pathogenicity of this virus is not proven, but transmissibility is all but proven, as is prevalence. The original science has now been confirmed by two US studies from the FDA and NIH, both of which await publication. The prevalence of XMRV in the healthy population appears to be between 3 to 7%. This does not include prevalence of the sick, disabled or dying. This virus is now linked to prostate cancer, autism, atypical multiple sclerosis, fibromyalgia, chronic fatigue syndrome, myalgic encephalomyelitis, and Gulf War syndrome, and suspected of being linked to breast cancer. Several of these illnesses are growing in incidence, as you are aware. The virus does not contain an oncogene, but it is a retrovirus with a hormone response element. It inserts into the DNA and is hypothesised to confer hormone sensitivity to nearby genes. This includes oncogenes, which can then be switched on by stress or sex hormones (male and female). The neuroimmune diseases it is linked to are all very similar, with similar biochemistry and symptoms. The virus appears to require an immune trigger before causing disease, and is suspected of being a risk with vaccination in those with the virus - but vaccination will only cause a premature trigger as these people are already at high risk. The lifespan of CFS patients might be twenty five years less than the rest of the population.

There might be two million Australians already infected by XMRV, many of whom are disabled, all of whom are at risk. Even a conservative estimate would now have to be 660,000 healthy Australians infected with XMRV.

I was very pleased that the Australian Red Cross Blood Bank has indefinitely deferred the donation of blood from patients with CFS. However, this is only a small subset of people with the virus, many of whom are still healthy. Like with HIV, XMRV can lie dormant for years or decades before causing illness or death. Those infected but not yet sick may be capable of spreading the virus, and there is no barrier to their donating blood.

Three antiretroviral drugs are known to treat XMRV in the lab. Off-label treatment with these drugs is anecdotally reported to be achieving good results after three months of treatment.

Several feature documentaries are currently being made that deal with these issues.

The time for action is here. Please let me know as soon as possible what your preliminary action is likely to be, and keep me updated with further information as you make it public.

As this is an election year, this might well be an election issue.

What needs to be done:

1. Immediate and ongoing government consultation with world experts needs to commence.

2. Australian scientific studies on this virus need to commence, so funding needs to be made available as a national priority.

3. Preliminary steps need to be undertaken to commence antiretroviral trials in Australia, prior to coverage under the PBS. Coverage should include both XMRV testing and treatment protocols. This is particularly important to those already disabled by this virus as most will struggle to afford testing or treatment.

4. Blood banks need to be screened for XMRV contamination prior to the development of XMRV neutralizing methodologies. Stored blood samples might be tested so we have an idea of who this virus has already been transmitted to though the blood banks.

5. Free or subsidized testing needs to be offered to the entire public to allow us to identify who has the virus so that public health education can commence.

6. A public health education campaign needs to commence to prevent undue panic. This virus is probably treatable, but not curable.

6. Work needs to commence on a vaccine against this virus. It is very important to get the science right as vaccination with an ineffective vaccine can trigger the virus. This virus is simple with a slow mutation rate, so developing a vaccine should be very easy.

The you for your urgent attention to this matter.

Bye
Alex Young
B.Sc. (biochemistry), B.Inf.

(I have omitted inclusions for brevity.)
 

Stone

Senior Member
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Shannah, I would be happy to grant you temporary tenancy in my home for free. This comes with use of the kitchen, pool, state and zip code. ;-)
 

anciendaze

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...As Dr. Mikovits said in an email to me personally, an electron microscope doesnt lie.
It wasn't lying in 1995 either when it showed a 70 nm C-type virus in cultures from the Lyndonville patients run by Elaine DeFreitas. For those in the business, this says retrovirus in big letters. Those early pictures are even said to have shown virions inside human mitochondria. To the best of my knowledge that was a major discovery all by itself. Now, why it was never published?

More to the point, why didn't the CDC insist on finding out exactly what it was inside those mitochondria?
 

Otis

Señor Mumbler
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I can conceive of no such explanation that would be satisfactorily believable by any but the most credulous. This is all just trying to put a cat back in a bag. Or finding oneself in a hole and trying to dig one's way out.
A wise person said when you find yourself in a hole stop digging.

CDC = Continuing to Dig Conglomeration. :D
 

Otis

Señor Mumbler
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Which are the most powerful lobbies in the US and which groups would be most interested in suppressing an XMRV-CFS conection?

My initial thoughts are

1) insurance companies, which avoid payouts and economise massively by insisting it is psychological
If this is floating around DC for long it's the insurance lobby that worries me.
 

Otis

Señor Mumbler
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My bet is on the drug companies now. As has been stated before;

"Yeah! Someone finally wants to exploit us." :victory:
Funny how big pharma is our hole card right now. I hope they're willing to add some more meds to the mix.
 

shannah

Senior Member
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Shannah, I would be happy to grant you temporary tenancy in my home for free. This comes with use of the kitchen, pool, state and zip code. ;-)
How Sweet Stone! North Carolina is lovely too! Thanks for the offer.

I tried numerous ways to register before finally being successful by using my home province then selecting a phony state and zip code. Hated to do that & felt so guilty BUT feel strongly on this one that voices need to be immediately heard.
 

Stone

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Has anyone tried to add a comment to the WSJ article asking them to correct the title which (again!) uses the term "Chronic Fatigue" instead of "Chronic Fatigue Syndrome"? I tried to add a comment asking them to change the title but my comment is still not posted.
 

Otis

Señor Mumbler
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I posted the following to Hillary Johnson's blog when I was awake in the night...

Not my best writing but I got it of my chest and felt better and eventually got back to sleep.

Comment to the the June 22 "The Big One" post celebrating the breaking of the NIH story

--->> Thanks George for clearing up the fact there are two studies 1 by NIH and 1 by FDA. Here's a nice bone. Awww, look at those big eyes, we'll make it a bone and some treats. :Retro smile:

@ http://oslersweb.com/blog.htm

Not so fast.

http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj

Hillary - helllllllllllllllllllp

We can't let them hold up research so they can sort out (or manipulate) the facts. The band is still playing.
It was a moderated comment so I think she saw it prior to being posted. I'm hoping she can dig into this.
 

dannybex

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The association of XMRV and CFS is all over the NIH website and stated categorically as fact.
http://www.nih.gov/researchmatters/october2009/10192009cfs.htm

If the latest study by NIH and FDA has been a joint effort and produced another positive result, this is basically a reiteration of what is already out there in the public domain.

So, if pressure is now being put on the various government agencies to "reach consensus before publication", isn't it more likely that the CDC is being pressured to explain why it cannot replicate the results of the NIH & FDA?
Otherwise the NIH would have to withdraw /recant on an already published conclusion.

Or am I just being too optimistic and naive?
Nope -- that's my conclusion as well. The CDC no doubt used the wrong techniques, etc., so the pressure is on them to explain why their study came back negative.

Plus, there's the whole blood supply issue that they must have to sort out before making a major announcement. After all, sure, a connection has been shown between XMRV and CFS/ME, but it's found more in 'healthy' or 'asymptomatic' people as well -- so I would think they're coordinating with other agencies to figure out how to address the blood supply thing...

Sorry -- I just don't buy the whole conspiracy thing. Sure, there's probably some 'conspirators' (fools) out there, but some massive interagency government coverup? Nope...with all the bloggers and just the internet forums all over the world, they can't get away with that anymore and they know it.

It's not 1990 anymore.