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Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap


I didn't see anything about the paper. Could you give another link, or tell me how to locate it?
Awww, bummer - that link is live now and it shows the contents of today's print issue - I can see no sign of the XMRV paper. :(:(:(:(:(

Gutted, as we say in the UK.
Thank you for contacting PNAS regarding this article. The article is currently in press and should appear online before the end of the month.



Daniel Salsbury

Managing Editor

Thanks for posting Joanie - I guess that could be the 24th or 31st of August, then - two more episodes of waiting-induced stress to come! :D

[BTW, do you think you should edit out your email address for privacy?]
Have hope! Allow yourself to feel a little better. Honestly work on imaging yourself being well -actively do that and that will help carry to when the right treatments become available. I do that - its very relaxing :)
Cort you sound like you are preaching from one of Weasels books .Thats the kinda spiel youd hear at a UK me/cfs clinic minus the right treatments become available bit they dont do treatment here .
Well, what Dr. M said in the RGJ article was [bolding mine] If they can actually tell how it's doing the damage, that indicates that XMRV came first. Or if it turns out that treating XMRV restores the immune system, that will answer the question.

Up until now, most of my hopes about XMRV have not really included the hope that I could recover. I have hoped that they're right about XMRV causing ME/CFS, so that there will be a diagnostic marker. I've hoped it would lead to respect and compassion for ME/CFS patients. I have hoped it would lead to treatment guidelines that recognize the immune system issues. I have hoped that it would lead to social support systems for patients. I have hoped I'll never have to hear that CFS is a "disease of unknown etiology" or any of the psychosocial gobbledygook that goes with that, again. I have hoped that with proven immune system damage, they would at least start testing for and treating the various opportunistic infections that we get. I've hoped it would finally lead to decent epidemiological studies.

But I haven't let myself hope that treatments for XMRV would let me get my life back. I kinda figured that whatever damage XMRV does (assuming it turns out to be the cause), has already been done to me. I'm way past that 5-year mark. The most I've hoped for is that maybe antiretrovirals would keep me from getting worse, so that I wouldn't have to always fear ending up bed-bound and unable to care for myself.

I'm almost afraid to hope for more. It's been so hard for me to achieve a level of acceptance, so painful to give up the dreams of what my life would be, so that I could stop grieving and say "Okay, this is my life, let me make the most of it. Let me enjoy what it is." I don't want to lose that. But I think I'm ready to entertain the possibility, the small hope, that I could be among those fortunate enough to recover.

It's painful to think about the things I might do one day, because it's a reminder of how much I've lost and what I can't do today. I prefer not to dwell on that. But maybe I can risk the tears, to imagine that one day I might be able to walk in the woods again, to plant a garden, to feel that good tired that comes from working your muscles, to dance, to meet my grandson...

It seems like such a small flicker of hope to hold up to such an immense desire.

A beautiful post, ixchelkali.

As you know I'm new to all this, but I have the impression that many of us have focused so much on how complex the disease is, that it seems "too simple" or "too easy" that there would be one "upstream cause" for all these varied "downstream" effects, symptoms, etc. that we suffer.

But the more I learn about virology, about the history of CFS and how it's been treated by the medical and research establishments, and about other diseases where the "cause" doesn't seem to be known, the more clearly it all comes into focus.

On the purely scientific side, it seems as if the obfuscation about how "complicated" the disease is is quite unnecessary. Nothing about CFS is inconsistent with a retroviral cause. Plenty of viral diseases have seemingly complicated "downstream" effects, don't effect everyone exactly the same way, don't make everyone who is infected sick, have the potential to become persistent, etc. When I first started learning (reluctantly) about CFS it seemed it was viewed with a sort of mystical hand-waving attitude, "Oh, things just get off-balance and can't get back on track, we don't know why, it's just some kind of general breakdown..." The scientific side of my mind, more and more, asks WHY? Multiple body systems don't just get out-of-whack without a good reason.

I do think there is lots of reason to hope, even for those who have been sick for some time. We have the tremendous advantage of being able to piggyback on many years and many millions of dollars of HIV/AIDs research. We will also have the great resource of the enthusiasm and interest of the scientific community - many retrovirologists will just be drooling to get their hands on a new retrovirus to study. What a reversal from the years in which it was widely known that researching CFS was career suicide.

I do take Dr. Mikovits with a slight grain of salt - she talks large sometimes, and the opening of the WPI is a huge adrenalin rush for everyone involved. But even allowing for some over-enthusiasm, I think the news is very good. Research can progress faster than it did in the past, for a multitude of reasons. In the meantime, I think the widespread recognition of CFS as a "real" disease will be HUGE. Getting a better name for the disease would be a nice bonus.

I've struggled too with whether I should learn to live with greatly lowered expectations of what my life will be like, or whether it's better to look forward to an improved future, even if I'm never completely "healthy" again. For some reason I'm still stubbornly attracted to the idea of hope.
Hi Cort,

I got the following reply from PNAS last week so hopefully soon............! :Retro smile:



----- Original Message -----
From: Salsbury, Daniel
To: 'joan.crawford@virgin.net'
Sent: Wednesday, August 11, 2010 10:10 PM
Subject: FW: NIH/FDA paper on XMRV in CFS

Thank you for contacting PNAS regarding this article. The article is currently in press and should appear online before the end of the month.
Thanks Joanie that either means the 24th or the 31st I think.
Cort you sound like you are preaching from one of Weasels books .Thats the kinda spiel youd hear at a UK me/cfs clinic minus the right treatments become available bit they dont do treatment here .
No, its simply about quality of life. There are lots of things you can do to impact quality of life when you are unwell - no matter what disorder you have. That's all its about.
Cort you sound like you are preaching from one of Weasels books .Thats the kinda spiel youd hear at a UK me/cfs clinic minus the right treatments become available bit they dont do treatment here .
I see a big difference. Cort is just suggesting a visualisation technique that can help you get through the waiting. He isn't claiming these techniques can 'cure' CFS or even something remotely like that. There's nothing wrong with a little postive thinking, as long as you don't overestimate it's power. It's a tool, not a cure.
Tracking Medical Research for Gulf War Veterans
August 17, 2010 posted by Denise Nichols Leave a Comment

Hot News Is Expected for Chronic Fatigue Sufferers

XMRV Findings More Expected

This is exciting news in the civilian world for Chronic Fatigue Sufferers that may very well lead to answers also for Gulf War Veterans who are ill with Gulf War Illnesses.

We have two researchers that are involved for the Gulf War Veterans, who also are active in the civilian world pushing for answers for CFS. These researchers include Dr Klimas and Dr Baraniuk. The following is the news on XMRV. If this research is published, I believe the highest priority will be for Gulf War Veterans to be tested and I feel assured that Dr Klimas and Dr Baraniuk will get that done from the gulf war veterans they have already seen.
I will push the VA and DOD to get on board rapidly to get this subgroup of CFS sufferers tested ie Gulf War Veterans. What is important is testing could progress rapidly if VA makes advance planning in this effort! And what is more exciting is that the researchers already feel there already exists drugs that could be treatment trials in very short order.

As a nurse officer that served in theater in the Gulf War, who is also ill, my push has always been find answers that will help us get our lives back! At least give us a better quality of life. I believe medical science and doctors can find the right tests and diagnose us and treat us. I just could not believe it would take us 20 years!

I was there as a nurse officer to care for each of you and I will not let up!

Keeping all updated and educating all is a goal. That includes all the veterans, all the legislators in DC, all the doctors, all the researchers. Each veteran can help in this effort. How? Provide the information to your doctors! Print out copies and give it freely. Place it on your facebook pages, place it on websites, distribute it in email networks, provide it to your US Representative and US Senator. Get the different organizations to help distribute the information in their news magazines and newsletters. Get the information to your televison news programs, to your newspaper news reporters, and to talk radio hosts across the nation.

So here is the latest on the XMRV news that I have gleamed from multiple sources.

Reno chronic fatigue findings confirmed by federal agency
By Lenita Powers • lpowers@rgj.com • August 17, 2010

Two Reno scientists, who last year discovered a new infectious human retrovirus they linked to chronic fatigue syndrome, said Monday that their findings have been replicated and confirmed by the U.S. Food and Drug Administration.

Dr. Judy Mikovits, one of the lead researchers with the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, said the FDA’s review of their findings is scheduled to be published in September.
“There has been an issue over whether anybody could replicate our study, and it will not only confirm our findings but extend our findings, which is really exciting for us,” she said.
Mikovits said they also have new, unpublished data concerning the retrovirus, XMRV, that could lead to treatment of chronic fatigue syndrome.
“We have immune system profiles, and we can tell by the immune system how the XMRV is doing the damage,” she said. “So we could have a diagnostic test to follow clinical treatment and show that people’s immune systems go back to normal. That’s the latest data that’s really amazing. That’s what we’re after.”
That data will be published by the end of the year, probably in a clinical immunology journal, she said.
Lombardi said clinical trials could begin soon at the Whittemore Peterson Institute, which is relocating from its tiny laboratory on the University of Nevada, Reno campus to the university’s newly opened Center for Molecular Medicine.
“Actually, we already have been contacted by people who are sending us tests, perceiving that they may be asked to be part of the clinical trials,” he said.
“I think once the (FDA) paper comes out and once the controversy is put to rest, the pharmaceutical companies will realize that this is some very low-hanging fruit for them to make the next transition,” said Lombardi. “There are so many drugs that have been developed for HIV, and it’s a retrovirus. So there’s probably a ton of HIV drugs that they can go back and re-screen that could be used.”
There are three published drugs that work against XMRV, Mikovits said.
“We totally expect at least one clinical treatment trial before the end of the year,” she said. “That is our goal, and that’s what this new facility is for.”



“The Alter paper is now in press, but I don’t know when it will go online and until then there will be a press embargo,” says Dr. Randy Schekman, editor of the journal Proceedings of the National Academy of Sciences, where the FDA/NIH XMRV paper on ME/CFS patients had been accepted and then pulled by higher-ups in the department of Health and Human Services. The NIH’s Dr. Harvey Alter is the principal investigator of the FDA/NIH study and one of the discoverers of hepatitis C.


Update: FDA/NIH Paper on XMRV & Chronic Fatigue Syndrome
Friday August 13, 2010
XMRV NEWSBRIEF: The FDA and NIH’s much-awaited paper on XMRV and chronic fatigue syndrome will reportedly be published soon, according to CFS Central blogger and investigative journalist Mindy Kitei. She quotes the editor of Proceedings of the National Academy of Sciences as saying that the study has gone to press.

XMRV, Chronic Fatigue and prostate cancer
XMRV, Chronic Fatigue and prostate cancer
.submitted by Chris Carter on August 06, 2010 .Tags: chronic fatigue, Prostate cancer, XMRV .Source: polygenicpathways.blogspot.com .The XMRV retrovirus has been implicated in chronic fatigue syndrome and prostate cancer. A homology search comparing retroviral with human proteins revealed short contiguous amino acid strings (typically 5-8 aa) matching human proteins whose dysfunction might be expected to cause fatigue, including mitochondrial proteins related to oxidative phosphorylation, glutamate receptors and their synaptic scaffolds, muscular acetylcholine receptor scaffolds and structural proteins, components of the immune system, and phosphatidylinositol signalling inter alia. Viral proteins are also homologous to members of the oestrogen, peroxisome proliferator, and CREB activated receptor networks, all of which are implicated in prostate cancer, and to a protein, SRCAP, that controls the expression of the prostate-specific antigen. These short matches are often predicted to be antigenic, and antibodies to XMRV proteins may target their human homologues. This is supported by the presence of autoantibodies to muscarinic receptors , vimentin and LAMINB1 (all XMRV homologues) in chronic fatigue syndrome sufferers.These data support a role for the viris in both conditions. http://www.microbeworld.org/index.php?option=com_jlibrary&view=article&id=4394

Debating whether to send this to a friend who is a General in the military (Canadian). I would like to think it may help. Any thoughts? Should I send the article, and what else should I tell him?

Kelvin Lord: Thanks for the Ampligen info.
I see a big difference. Cort is just suggesting a visualisation technique that can help you get through the waiting. He isn't claiming these techniques can 'cure' CFS or even something remotely like that. There's nothing wrong with a little postive thinking, as long as you don't overestimate it's power. It's a tool, not a cure.
Exactly. Doesn't cure my ME/CFS - still can't exercise but my quality of life is better. There is an overlay that years of problems naturally deposits on ones psyche.... no matter what disorder you have. Getting ahead of that a bit doing meditations, affirmations, whatever is certainly helpful, at least for me.
I'm real curious as to what drugs they are using. I can't even imagine one that really does get rid of it? It would be a miracle. But the first step is getting accurate blood tests that doctors will believe in.
Heck I just decided to send the article and see what he says. Well I sent it to his wife, hoping she will pass it on. If I hear anything I will let you know.

PNAS has received occasional criticism for its practice (sometimes known as news embargo<sup class="reference" id="cite_ref-Yong_17-0">[18]</sup>) of releasing papers to science journalists as much as a week before making them available to the general publicaccording to critics, this allows mainstream news outlets to misrepresent or exaggerate the implications of experimental findings before the scientific community is able to respond.<sup class="reference" id="cite_ref-LLL_18-0">[19]</sup><sup class="reference" id="cite_ref-19">[20]</sup> Science writer Ed Yong, on the other hand, has claimed that the real problem is not embargoes themselves, but the press releases issued by research institutes and universities.<sup class="reference" id="cite_ref-Yong_17-1">[18]</sup>

Seems like it's a moot point as to who's to blame for things getting messy...
I've just thought........First CFS drug was Ampligen, an AIDS drug.

No wonder the FDA never approved Ampligen, people would have been asking questions why an AIDS drug works for CFS and if CFS patients thus also have a retrovirus!!!!!!!

How tragic for everyone involved.

I hope Andrea Whittemore can spill the beans next year what 'treatments' she is on, as it's no longer Ampligen.
how can you impact quality of life when your brain is being squeezed and squished 24/7? i havent found a way yet! lol

positive thinking however, did help when i wasnt this sick....and i dont think most people are quite this sick!

i think the main reason ampligen wasnt approved is the fact that it is IV and would cost a mint to give to everyone who is sick. and i am sure it will end up being prescribed for MS and stuff too!

carrigon...when they say "get rid of" i dont think they are talking about actually eliminating the virus...that won't be done for many many years yet!

i got my eye on the upcoming Protstratin HIV human trials in 2011....they are going to try hard to eradicate that one and when they do, no one can tell us retroviruses are impossible to eradicate!

Awww, bummer - that link is live now and it shows the contents of today's print issue - I can see no sign of the XMRV paper. :(:(:(:(:(

Gutted, as we say in the UK.
Hey, there is an interesting paper on the relationship between diet and gut flora though.
Gutted indeed. :p