Saturday, October 10, 2009

XMRV

“We’re here from the government and we’re here to help.”

The Patient Advocate spent the last several days reading about the retrovirus XMRV and what is being called X associated neuro-immune disease, or XAND. The PA had known this announcement was coming and had a very big interest in the release of this data.

The PA had trouble sleeping last night, as he was so excited. The research news of the WPI made him giddy, and the PA is still that way the next day. The PA woke up October 9, 2009 and felt more “normal” than the PA has for four or more years. Sanity has come back into the life of this Patient Advocate. The PA has known for a long time that he is living in a bad dream world - a world of uncertainty and confusion. This research study adds clarity to the world of CSF/ME . This is big news, and bodes well for the future. Thank heavens for Judy Mikovits (and Cheney and Peterson and Whittemore, and all the others)!

After two short years the WPI has delivered the goods. They did hard work and careful research, publishing the results in a significant journal. Consequently it got disseminated widely and quickly. The PA’s “Google alert” lit up shortly after 2 o’clock on October 8,2009 with the names of Judy Mikovits and the Whittemore-Peterson Institute. Nothing like this has ever happened in the world of CFS/ME.

The PA saw Judy Mikovits a few years ago at a CFS conference and then again in the UK and then again in Baltimore, Reno and the UK. I have heard her speak a number of times. She is a dynamo. The talk that she gave in the UK in May 2008 blew the Brits away. These Brits had never seen anything like her. This year she returned and the same thing happened - except that she was slightly calmer and had more information at hand. At the end of the daylong conference she was asked a question about whether the WPI had identified (as rumored) a virus implicated in CFS. She smiled coyly, and said quietly - “yes”. Months later we get the details of this study.

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. The painter Cezanne was rumored to have said that “they should shoot one thousand painters a year”. Perhaps this formula should be applied to doctors?

There is a great deal of controversy and anger circulating on the internet about the CDC and our vaunted government. It is best represented by a blog of Hilarie Johnson, author of Osler’s Web.

10 comments:

  1. Very informative piece, thank you, with a lot of info and comment I haven't seen elsewhere. Don't suppose you know what the X of 'X associated' stands for in XAND do you - XMRV, X-chromosome? I'm a bit confused.

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  2. I don't really know the answer. I assumed that it was for XMRV.

    Chris

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  3. Great post. I think that "X" stands for "xenotropic" - which means "foreign" (xeno) and "growth" (tropic). This news truly is like a bomb going off everywhere. I feel in my bones that "this is it...this is the answer." I had my hopes up once before after the Wichita/CDC study. But this feels right. As a person with CFS since 1985, I've followed the research for 24 years, and have long believed the cause to be a virus or retrovirus. This is liberating validation for so many hundreds of thousands of people. I plan to be tested. I'm glad for the breakthrough, it's good news. But it doesn't mitigate all the pain caused by stupid, judgmental doctors and other people over nearly 3 decades.

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  4. I wonder how in the world any of us will afford ampligen? So many of us in the USA have no health insurance and the insurance companies are increasing their efforts to derail reform. And those of us on National Health Programs will no doubt have to fight tooth and nail to get ampligen or the like funded. What hope is there for the next couple of decades?

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  5. What would you consider the best diet for CFS?

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  6. I got this great list of "What this treatment means" on a comment on my blog. I couldn't figure out where it came from - and here it is. Great insight on Ampligen (I stole it!) Thanks!

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  7. Great stuff Christopher, thanks for your insightful analysis... you’ve thought it all through very well…

    it's got our whole community fired up hasn't it!
    it's been really explosive across the web, even here in the UK...
    i read somewhere that the story was the most emailed article in the New York Times last week.

    and i totally agree with 'cinnamon radio' that it's liberating and vindicating for us all...
    even if it turns out not to be the cause of ME, i find the mere possibility that the disease might be confirmed to be a virus, to be just so overwhelming...
    i've been feeling elated and joyful since the news, and i haven't experienced those emotions since i got ill 5 years ago...
    i'm feeling like this even though i'm fully aware of all of the caveats and cautions etc.

    i'm one of those Brits who was blown away by Mikovits at the 'Invest in ME' London conference...
    well, i wasn't there in person but i watch the iiME conference DVD ever year... it always gives me hope, and has been the best source of info for ME...
    i think that you have more access to information in the USA... there seems to be only a trickle of information or research over here in the UK regarding developments in ME, but it is growing, along with support groups and campaign groups, and biomedical research campaigns... they all seem to have flourished since i got ill 5 years ago.

    Like you, i've also been thinking about the consequences of this research for the ME community and also the population at large, for all of the reasons you give.

    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 always knew that the biomedical research for ME was the most cutting edge scientific work going on in the field of biomedical research... always using the latest techniques to investigate new areas of genetics and virology and immunology... and, because of this, i thought that any discoveries might cross over into other immune and neurological areas, such as autism, MS, schizophrenia and bi-polar etc., but i really didn’t expect such an explosive discovery and definitely not 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 and pathetic little virus…
    I feel like standing outside my flat, and shouting to the world “so now you believe that i'm seriously ill!”… very loudly.
    i think we all feel vindicated and validated… and the shock-wave has only just begun.

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  8. Great write up - one of the $64million questions is HOW do we test for the XMRV virus - you note that since the Science paper's release Judy Mikovits has found more than 95% of those tested (presumably all CFS sufferers)have tested positive for the virus - is there any information 'out there' about a blood test becoming widely available?

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  9. Hi Lucy,
    I've read a couple of quotes from Judy Mikovits saying that she expects to have a blood test available, for general release, within 6 months... her team are working hard at it.

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  10. Judy Mikovits:
    to quote John Mellors "how many negative will it take to get rid of these religious fanatics" you may blog it and discourage anyone from [participating ..Their goal is to prove everyone negative fro XMRV/MRV total corruption...crime against humanity.

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