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I didn't see anything about the paper. Could you give another link, or tell me how to locate it?
Thank you for contacting PNAS regarding this article. The article is currently in press and should appear online before the end of the month.
Regards,
Daniel
Daniel Salsbury
Managing Editor
PNAS
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
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.
cruzgirl- One of the drugs they reported in an earlier report is Ampligen: http://www.wpinstitute.org/news/docs/AAA2010WPIposter.pdf
Its out but not for public so embargo not broken
the Alter / Lo paper is now on the PNAS website but locked down and inaccessible for public viewing at the moment.
This is the link ???????
http://www.pnas.org/content/107/33.toc
Thanks Joanie that either means the 24th or the 31st I think.Hi Cort,
I got the following reply from PNAS last week so hopefully soon............! :Retro smile:
BW
Joan
----- 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.
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 .
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.
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>
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.