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

Comments

Thanks Cort, you are right, I began the day in such a hopeful way with all this information, it is going to get better. It will get better. I just got so depressed trying to do a little cleaning as the house is so dirty and just felt too sick to try, that I got down and I think that is where the comments came from.

Lets everyone try to keep as upbeat as we can be. I used to say fake it to make it, sometimes it applies to this as well. If can imagine a day where I feel well that is half the battle. Knowing that money is coming down the pike to help us means this will become reality. It will become reality. It will become reality!:victory:
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 :)
 
XMRV has to be it. its too late for me to wait for another retrovirus to be found. i don't think they are going to be looking for another virus for a long time..they are very busy with just this one.
-S
 
I added this to the article. PNAS does all the authors of the paper considerable latitude in getting the news out about their work to the media prior to publication.

(Megan on the Forums has noted that PNAS has a very liberal 'prepublication' policy that allows the authors of the paper to freely provide summaries of their findings to journals, etc. prior to publication. Different journals clearly take very different stances on this issue. You can check out their policies here )
PNAS has a liberal pre-print policy but their rules regarding discussions of accepted publications with reporters appear to be a bit more restrictive:

All investigators should strive to inform the public about the accomplishments, methods, and motivations of science. This is best done in the popular press. The public has a right to know what we do and why we do it. We do ask that once a paper is accepted you coordinate your discussions with reporters with the National Academy of Sciences press office so that the current procedures, which allow a wide range of journalists to gain information in an equitable fashion, are honored.
 
Daffodil: I don't know if that is true that they are not looking for more viruses. While watching Mrs Whitmore on the piece by her and her daughter today she spoke about a way the blood services may test things so that all diseases would be excluded. So it must be a very interesting test they have to do this.

I think that medicine is at a cusp right now and will find many diseases are from viruses. I put an article in the forums here about Crohns disease and how they feel they may have a virus in the gut that is causing it. I am interested in this as many family members have Crohns disease. The other reason I put the article in was more to give hope, as I am sure more disease have developed because of viruses.
 
XMRV has to be it. its too late for me to wait for another retrovirus to be found. i don't think they are going to be looking for another virus for a long time..they are very busy with just this one.
-S
I'm not sure that this is the case. During her interview on Virology Blog, Dr. Singh clearly implied that this could very well be the beginning of new ways to look for previously undetectable pathogens. Who knew that PCR alone would be insufficient to detect a retrovirus? Who knew that retroviruses could exist in the blood at such low copy numbers? Very little effort has been spent on finding viral infection in fluids and tissue other than the blood. All "low hanging fruit." We may be watching the beginning of a paradigm shift. As Dr. Klimas stated in December (or January?), there are a lot of bored retrovirologists out there who got into the field because a 10-20 years ago HIV was still challenging and innovative. She expects that many will jump at the chance to research and treat a new disease. Ironic that the disease that so few wanted to study (even simply acknowledge as real) just might be the key to a new way of looking for or treating our most challenging diseases.
 
thanks cruz. i just hope and pray i have XMRV. i agree that there will be viral causes found for so many diseases. just cannot wait anymore.

perhaps i will get a VIP panel again and see if my NK functions have improved and if my RNase L has gone down further.

i read about a guy on ampligen who's NK function and RNase L improved but he was still really sick. then i hear of others who responded in 2 weeks.

if it's just a question of waiting i will do it...but not knowing is killing me!

-S
 
Could have been Planned!!

PNAS might have allowed Dr. Mikovitz to announce the findings in exchange for publishing her findings to be annouced later in the year. PNAS might not be real happy with CDC anyway! Just a thought!
 
I'm not sure that this is the case. During her interview on Virology Blog, Dr. Singh clearly implied that this could very well be the beginning of new ways to look for previously undetectable pathogens. Who knew that PCR alone would be insufficient to detect a retrovirus? Who knew that retroviruses could exist in the blood at such low copy numbers? Very little effort has been spent on finding viral infection in fluids and tissue other than the blood. All "low hanging fruit." We may be watching the beginning of a paradigm shift. As Dr. Klimas stated in December (or January?), there are a lot of bored retrovirologists out there who got into the field because a 10-20 years ago HIV was still challenging and innovative. She expects that many will jump at the chance to research and treat a new disease. Ironic that the disease that so few wanted to study (even simply acknowledge as real) just might be the key to a new way of looking for or treating our most challenging diseases.
This is inspiring stuff. I really wonder about hard to find viruses in the central nervous system . They could be very hard to find in the blood yet doing damage in the brain. It could be that central nervous system viruses will the be last one they figure out how to spot. This finding makes Dr. Singhs autopsy study all the more interesting. What will she find??? I hope CBS can sneak into her lab and look at some slides. :victory:
 
PNAS might have allowed Dr. Mikovitz to announce the findings in exchange for publishing her findings to be annouced later in the year. PNAS might not be real happy with CDC anyway! Just a thought!
I imagine that PNAS is VERY happy at these results. The DHHS actions indirectly suggested that they didn't have the best review policy. They are certainly amongst the winners here.
 
All I can say is, thank God for Annette Whittemore and the team she has put together. Maybe, maybe I will feel well again some day.
 
I've kind of lost the plot now - have read so much about the PNAS release that it's all swirling about in my head - but is it the case that if the Alter paper is published in PNAS in this week's issue that it will go live on the website at 3pm today? I've become confused with all the talk of embargos & whatnot.

Or did I see someone say a while back that being an important paper it wouldn't be expected to appear in their online edition at all, only in the print edition and without being announced in their early thingy? But would it get announced in a press release somewhere?

If it's 3pm today, does anyone know what time that is in the UK? Totally lost all notion of how to work the time out now that we're in British Summer Time and not GMT (I think).

:confused::ashamed::Retro redface: (that is meant to indicate puzzled stress with a hopeful ending!)

Suspense... killing me...
 
If it's 3pm today, does anyone know what time that is in the UK? Totally lost all notion of how to work the time out now that we're in British Summer Time and not GMT (I think)...Suspense... killing me...
Yet more symptoms of ME/CFS.

The Sun passes over the UK five hours ahead of the eastern US. Both have a Summer/Daylight-Saving time. (I'm still waiting to get all those saved hours back.)
 
I hope CBS can sneak into her lab and look at some slides. :victory:
Never even crossed my mind (and how would you like to have done something like that and then be found out - can you say "witness protection program?" And if I were to recover my health enough to resume work - career suicide! :eek:. All that and Dr. Bateman is such a genuinely nice person. I'd be crushed by the look of disappointment on her face.
 
I've kind of lost the plot now - have read so much about the PNAS release that it's all swirling about in my head - but is it the case that if the Alter paper is published in PNAS in this week's issue that it will go live on the website at 3pm today? I've become confused with all the talk of embargos & whatnot.

Or did I see someone say a while back that being an important paper it wouldn't be expected to appear in their online edition at all, only in the print edition and without being announced in their early thingy? But would it get announced in a press release somewhere?

If it's 3pm today, does anyone know what time that is in the UK? Totally lost all notion of how to work the time out now that we're in British Summer Time and not GMT (I think).

:confused::ashamed::Retro redface: (that is meant to indicate puzzled stress with a hopeful ending!)

Suspense... killing me...
I think we have the essential results now but the paper will be published in Sept. (Maybe they will speed it up now?)
 
Yet more symptoms of ME/CFS.

The Sun passes over the UK five hours ahead of the eastern US. Both have a Summer/Daylight-Saving time. (I'm still waiting to get all those saved hours back.)
Thanks! My brain has left the building, basically.
 
I think we have the essential results now but the paper will be published in Sept. (Maybe they will speed it up now?)
Aww... I thought we were still sort of hopeful for this week. I thought the September idea was only from that one interview with Dr Mikovitz in that local paper and that they might have got it wrong.:(:(:(
 
I think we have the essential results now but the paper will be published in Sept. (Maybe they will speed it up now?)
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.



Regards,

Daniel





Daniel Salsbury

Managing Editor

PNAS

700 11th Street, NW

Suite 450

Washington, DC 20001

ph 202.334.2682

email dsalsbur@nas.edu

From: Joan Crawford [mailto:joan.crawford@virgin.net]
Sent: Wednesday, August 11, 2010 4:03 AM
To: PNAS
Cc: joan.crawford@virgin.net
Subject: NIH/FDA paper on XMRV in CFS



Dear Dr Schekman,



I'm a researcher working, in the UK, with patients who have CFS. I understand that a paper by Atler et al (NIH/FDA researchers) regarding the prevalence of the retrovirus XMRV in patients with CFS has been accepted by the PNAS journal.



I was wondering when this paper and abstract will appear on-line making the information available for press, medical professionals and patients?



Warm regards

Joan Crawford MSc CEng
 
Maybe it could also be the other way about. What came first, chicken or the egg? Maybe the immune abnormalities we had BEFORE the virus. Maybe they made us more susceptable to catching it?
Well, what Dr. M said in the RGJ article was [bolding mine]
"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 peoples immune systems go back to normal. Thats the latest data thats really amazing."
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.
 
Brilliant news Cort - thanks for posting.:Retro smile: