XMRV/XAND Information Center

October 14, 2009

Posted by Cort Johnson

The discovery of the XMRV retrovirus in most chronic fatigue syndrome (ME/CFS) patients appears to be a demarcating point in the history of this illness. The publication of the study in Science, the most prestigious scientific journal in the world, by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute prompted a flood of stories across the major media outlets and scientific publications including Nature, Scientific American, the New York Times, (two articles), NPR, Fox News, LA Times, etc.

Amid concerns that the blood supply was contaminated the NIH officials announced they’d already held a conference on the issue. The Whittemore Peterson Institute rapidly conferred a new name for what it believes are a cadre of XMRV diseases – XAND (X Associated Neuroimmune Disease).

Questions were quickly raised concerning prevalence, transmission, testing, treatment, etc. Much is still unknown about this new finding with news coming in almost daily.  Please post comments/suggestions to me using the contact box on the above left top of the page or at phoenixcfs@gmail.com.

Check out the below sections for more information on this startling find.

7 comments

{ 6 comments… read them below or add one }

drew October 15, 2009 at 2:05 am

Here’s a great summary of the implications of these findings that I found online:

What does this study mean?

It gives legitimacy to this disease in a way that had been missing since the beginning. Time will tell – but it will become a “real disease”, and doctors will have to deal with it.

It allows for a name change, to XAND (or something), and the CFS moniker will be gone forever.

It means that there is a path moving forward. The path is not that much different than it has been – but it is broader and clearer.

It means that, within six months, there will be a marker. (The WPI is also working on a cytokine marker that corresponds to the viral marker.)

It means that current drugs will be tested against this virus, starting right away. There are a host of antivirals, anti-HIV drugs, cancer and immune regulatory drugs that can be tested – including a promising ongoing drug in trial in Canada. (Mikovits spoke of this in Reno.) This virus, and the disturbances that are caused by XMRV, will allow for various cocktail treatments to be tested.

It means that Judy Mikovits is on the national research map, and that the WPI will get money to hire more people and work in consort with NIH and NCI researchers.

It means that other researchers will get on board, all over the world.

“This is going to create an avalanche of subsequent studies.” Dr. Schnaffer (Vanderbilt).

This is not so much from a concern about the CFS/ME community, of which the government cares not a whit. The CDC will be freaked out by the 3.7% of the controls that tested positive for the XMRV virus. This translates into 10 million Americans potentially sitting on the edge of “something”. The CDC is going to want to find out about this “something”, and tons of money is going to go into studying this virus. CFS is going to go from an ugly duckling to a poster/delivery boy.

It means that another huge avenue of research and treatment is now open -through a direct connection with AIDS. The huge amount of AIDS research will contribute to research in this area, and move things along quickly.

It means potential treatments and/or disease tracking regimens.

It means that much more information will be coming soon, and at a faster pace. Cheney and Peterson and de Meirleir and Enlander and Lerner and Levine and Myhill and Chia and Montoya and the WPI are all pooling information. Cheney has posted his comments on his cheneyresearch.com. He is totally connected to the idea of this retrovirus being involved in a “causal” way. He is forging his own way, and sharing his ideas.

It means that Ampligen will be most likely approved by the FDA. Ampligen, made by Hemispherx, regulates the RnaseL pathway, and has had success with a good number of patients. Dr. Charles Lapp is particularly upbeat about Ampligen, reporting that he gets good results with patients. Ampligen is infused through an IV, twice a week. Hemispherx is run by a bunch of bozos. They have dithered with the FDA, and screwed up the trials and the protocols for twenty-five years – even though Ampligen is seen as a functional drug for some people. As has been suggested by others, the FDA is complicit in this poorly managed process. Regardless of who is to blame the fact remains that this drug is at a standstill. This PA met a fellow in Reno who regained his normal activities for a number of years on this drug. Subsequently mismanagement by Hemispherx (or the FDA or both) cut him off from access to the drug. He got worse. Then he was able to get back on it, and he got better, and then the company cut him off again. Hemispherx seems incapable of filling out the forms to allow successful trial patients to continue on the drug (standard protocol). Annette Whittemore’s daughter successfully took Ampligen for eight years but had to stop as she developed a reaction to it. On the other side, the FDA has been reluctant to approve a drug for a disease that does not exist in their lexicon. The CDC has been unable or unwilling to engage this disease, preferring instead to feel good about themselves at their fancy dinners. In a quite unusual fashion, the FDA has delayed the decision on Ampligen. First the FDA announced that a decision was to come on Feb 24, then they switched to May 24, then to two weeks later. Now it is October and nothing has happened. No one knows what the problem is. The FDA says nothing. With this XMRV study and the resultant complete humiliation of the CDC, the FDA is under extreme pressure in regards to Ampligen. If they reject it, they are in deep shit. Ampligen is seen as a front line treatment for CFS – and now with XMRV the pressure has increased. More and better Ampligens are bound to come down the pipeline. The FDA is in a big bind here, and I am betting on approval for Ampligen.

It means that XMRV either causes this immune breakdown or conspires with other things to do it, or is a tag along (not likely). Possibly XMRV acts synergistically with other viruses, particularly HHV-6, to cause illness. Obviously a lot of people are walking around with this disease, including perhaps me, without being symptomatic. Others are able to push it back and have their immune systems function at some level. Many other people, with various treatments, are able to make progress and improve. This doesn’t of course apply to the sickest, who desperately need help.

Most importantly, this study confirms what many people already knew or suspected. The illness is an immune irregulation triggered by a virus or viruses.

“Since the original Science paper was submitted, we have continued to refine our test for XMRV and have surprisingly found that 95 percent ME/CFS samples tested positive for XMRV antibodies in the plasma. This finding clearly points to the retrovirus as a significant contributing factor in this illness,” said Judy Mikovits.

Through trial and error Peterson and Cheney have been following divergent but equally profound models of this illness – and this study brings them together. It looks to me like everyone is on board with this discovery, and this too is big news.

What this study ultimately means, we do not know. We will have to wait for confirmation and further studies.

In the meantime our job is clear. It will be to continue what we are doing, and with a renewed intensity (no stress though). This amounts to following Dr. Guyer’s ideas of strengthening the immune system with diet, rest, immunomodulators, balancing thyroid/adrenal hormones and chipping away at viruses with antivirals. Many other things – FIR sauna, methylation protocol, energetics, improving gut ecology, trampoline, juicing, LDN – are seen as contributing factors to long-term improvement.

The blood work, and other diagnostic and tracking tests, will continue and contribute to our knowledge base that will only grow in time. The fact is that various people recover from the disease, either partially or completely. Items like transfer factor or Isoprinosine or especially Nexavir (which is seen as a weak Ampligen), Ampligen itself, and the antivirals all bring betterment in many cases. Cheney is particularly enthusiastic about artesunate. Chia proposes Oxymatrine for enteroviruses, another player perhaps.

This study is like throwing a bomb into the offices of the CDC and into the offices of every idiotic doctor in the country. They are all scurrying under their little desks. No longer will the patients get this ubiquitous and limp advice from these ignoramuses.

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Bob October 16, 2009 at 7:15 am

Great stuff, Drew… you’ve thought it all through well…
it’s got our whole community fired up hasn’t it!

Like you, i’ve also been thinking about the consequences of this research for the ME community and also the population at large.
This research will definately bring new funds in because all the virologists, internationally, will now want to be involved, along with all the international centres for disease control.

And Mikovits is also suggesting the virus is linked to Autism and Atypical MS and possibly other neuro-immune diseases and possibly some cancers as well.

I knew that the biomedical research for ME was the most cutting edge, and i thought that any discoveries might cross over into other immune and neurological areas, but i really didn’t expect such an explosive discovery for a few years yet!

To think that all of the pain and the struggle that we’ve all collectively been through could be down to one measly virus…
I feel like standing outside my flat, and shouting to the world “now you believe that i’m seriously ill!!!”… very loudly.
i think we all feel vindicated and validated… and the shockwave has only just begun.

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drew October 16, 2009 at 2:27 pm

Bob–

I wish I could take credit for that post, but I didn’t write it. I just found it online. But I think he nails it.

Cheers (here’s to an end to this illness VERY SOON!!),
Drew

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Bob October 20, 2009 at 5:19 pm

well, thanks for highlighting it anyway drew!
yes, i agree, he nails it…
and at least this research has given us all so much hope, even if we aren’t all cured this year.
:-)

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kim October 22, 2009 at 7:19 pm

drew, can you give us a reference for this great summary? Author? url? publication?

Reply

Bob October 26, 2009 at 4:27 pm

Hi Kim,
I was interested as well, so I found it using google…
It’s from a blog by ‘CFS Patient Advocate’:

http://cfspatientadvocate.blogspot.com/2009/10/xmrv.html

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