Article: An Altered Reality for ME/CFS: Dr. Mikovits Breaks the News on the Alter Pap
- Thread starter Phoenix Rising Team
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A day when the snarky and cynical can gather with their equally snarky and cynical relatives and eat too much.
Sounds like my kind of party!
Great news, but still feeling a bit reserved. Been let down so often that I'll really have to see it, I guess. Does this mean no paper in PNAS before september? And won't the 'leaking' of Dr. M. jeapordize the publication?
i cant see at this point how it could jeapordize publication as everyone just wants more then ever to to actually SEE that publication.
All the media about it (even if much of it negative so far) and the constroversy over it, has just made this paper one in which so many more are now just wanting to see. It has brought it well and truely to public attention beyond what there usually is. So maybe in the end.. all that publically has been very good.
hahaha Wessely and buddies. It has backfired!
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?
Keep meaning to say that'd be a great campaign slogan...
I too wonder what drugs they are using. I am so excited and feel a glass of champagne is in order, but then again you wonder if the rug will be pulled out once again.
Of course my other fear is what happens when they finally get a test for us to take and I am the one found not to have it and I am stuck in this disease state. Some days I freak out a little about this. I want to feel better so badly.
What if some of us have XMRV and others have another type of virus and we have to wait for that to be discovered. I only say this because there seems to be different subsets of us. Also those with fibromyalgia seem to never be included in this discussion. I have both. Will both diseases be found to be part of XMRV?
So many questions, so many fears. Of course my biggest fear is being stuck like this the rest of my life. I also wonder if it is like someone who has heart disease, has surgery but they don't feel better afterwards like they should. Their body has memory of disease and stays in the state until slowly it moves on and gets better. I believe Dr Cheney (or someone) discusses this. Will those who have the disease the shortest time have the best outcomes?
Sorry my mind is racing.
Here is to HOPE, lets hope there is more to come.
Of course my other fear is what happens when they finally get a test for us to take and I am the one found not to have it and I am stuck in this disease state. Some days I freak out a little about this. I want to feel better so badly.
What if some of us have XMRV and others have another type of virus and we have to wait for that to be discovered. I only say this because there seems to be different subsets of us. Also those with fibromyalgia seem to never be included in this discussion. I have both. Will both diseases be found to be part of XMRV?
So many questions, so many fears. Of course my biggest fear is being stuck like this the rest of my life. I also wonder if it is like someone who has heart disease, has surgery but they don't feel better afterwards like they should. Their body has memory of disease and stays in the state until slowly it moves on and gets better. I believe Dr Cheney (or someone) discusses this. Will those who have the disease the shortest time have the best outcomes?
Sorry my mind is racing.
Here is to HOPE, lets hope there is more to come.
FDA/NIH XMRV paper
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
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
Thank you, WPI.
Don't fail us, FDA.
Don't fail us, FDA.
What embargoes are
While patients may appreciate Dr. Mikovats frankness and refusal to follow established procedures it has earned the scorn of many neutral scientists. Scientists who might otherwise be interested in the area. They may well pursue XMRV, which has not yet been proven to cause any disease in humans, but not as it relates to CFS.
Until the Alter paper is published it is off limits. Her failure to follow well established protocols may well be one of the reasons she was not invited to speak at the upcoming XMRV study as were other authors of Lombardi et al.
As for the embargo, that refers to a protocol that journalists have to follow if they wish to be able to see papers and contact people for comment prior to the embargo being lifted by the journal in question. This levels the playing field for journalists in competing markets. Most journals post their embargo policy on their website.
While patients may appreciate Dr. Mikovats frankness and refusal to follow established procedures it has earned the scorn of many neutral scientists. Scientists who might otherwise be interested in the area. They may well pursue XMRV, which has not yet been proven to cause any disease in humans, but not as it relates to CFS.
Until the Alter paper is published it is off limits. Her failure to follow well established protocols may well be one of the reasons she was not invited to speak at the upcoming XMRV study as were other authors of Lombardi et al.
As for the embargo, that refers to a protocol that journalists have to follow if they wish to be able to see papers and contact people for comment prior to the embargo being lifted by the journal in question. This levels the playing field for journalists in competing markets. Most journals post their embargo policy on their website.
maybe Dr. Mikovits has had it with protocol. it has never served us before. she has a tremendous weight on her shoulders and has to get things done quicker than they have been. if the dutch hadn't leaked the FDA/NIH paper to begin with, it would have just been buried. no one has treated us fairly, why should we play nice now? the WPI knows it has the smoking gun; no one is going to be neutral for long.
cruz...that my problem. so far, negative to XMRV and still sick as a dog, even on the HIV meds.
-S
cruz...that my problem. so far, negative to XMRV and still sick as a dog, even on the HIV meds.
-S
Hi Rene,
Have you seen the Alter paper on the PNAS site? I'm wondering how you know the paper is on the web-site "but locked down and inaccessible for public viewing at the moment."
Thanks,
Shane
Cruzgirl - I think this means there is tremendous hope for you. Even if you don't have XMRV this finding should make everyone take a different look at CFS! If XMRV works in the long run, if it is present and it is a major factor, then how can the medical world go back to treating whatever group of people who do not have the virus - as they did before? They can't - they have to look at this disease with new eyes.
For people who have XMRV I think it will certainly take awhile to figure out how to effectively treat it but there will be alot of research and money devoted to figuring out how to do that. Finding a virus is the best outcome anyone could hope for. It makes the search for treatments so much easier.
Daffodil: I am so sorry you are still sick even on the HIV meds.
There are I am sure a lot of variables with XMRV and how all of this will pan out. Perhaps you are not on the right types of medicine for the disease, only time will tell. Perhaps you just need time for your body to get used to what they are doing....
The other thing is like I said a learned condition for your body and perhaps new pathways need to happen for your body to realize the new normal. Perhaps all those brain issue will come to play and they will need to be rewired. Only time will tell. All I know is that at 49 years of age I don't want to wait a lifetime for help, I have been sick all my life.
This still is in its infancy, my only hope is that my children will get help and not have to live this long unwell. Scratch my only hope, I want to get well too. I am sick of living like this.
Here is to better days....:Retro smile:
There are I am sure a lot of variables with XMRV and how all of this will pan out. Perhaps you are not on the right types of medicine for the disease, only time will tell. Perhaps you just need time for your body to get used to what they are doing....
The other thing is like I said a learned condition for your body and perhaps new pathways need to happen for your body to realize the new normal. Perhaps all those brain issue will come to play and they will need to be rewired. Only time will tell. All I know is that at 49 years of age I don't want to wait a lifetime for help, I have been sick all my life.
This still is in its infancy, my only hope is that my children will get help and not have to live this long unwell. Scratch my only hope, I want to get well too. I am sick of living like this.
Here is to better days....:Retro smile:
I'm going to have to disagree with you Daffodil on whether the paper would have been buried. Dr. Alter is a VERY well known and respected researcher. I don't think the medical establishment could every bury something by him.
Did you see the Nevada Newsmakers interview with Andrea and Annette? Andrea is doing much better; from the way she worded it I had the feeling she was trying something different from the normal round of antiretrovirals. Plus as Dr. Lombardi stated there are 100's of other possibilities - don't give up hope!
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:
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 )
(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 )