Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
judderwocky said:please be aware. from my communication with them they do not endorse this. they do not believe this will help them.
you are shooting them in the foot.
i will say it again. Their media department, after I spoke with them, does not endorse this. they do not feel this will help them.
you should wait for their press release. after mikovitz has traveled one is going to be published shortly. at least give it a few days to hear their official response... something could change by then either way. at this time i can only telll you what they told me...
if you still feel then like this is the best course of action, nobody can stop you, but i think at this time it is very unwise.
at least wait for the WPI press release... they have asked that much.
Cort wrote,
Cort - do you have link? I would very much like to hear this. I heard him on TWiV (a month ago?) and he sounded very neutral and nowhere giddy.
Thanks,
Otis
[URL="http://soundmedicine.iu.edu/segment/2514/XMRV--A-Virus-That-May-Cause-Prostate-Cancer"]Dr. Goff Talks
[/URL]- Dr. Goff talks with Dr. Kathy Miller on Sound Medicine in an audio clip. He emphasized that researchers have been working on XMRV's close relatives (the murine retroviruses) since the seventies so there a wide body of knowledge on this general type of retroviruses. The most pathogenic aspect of these retroviruses is their ability to insert themselves in places in the DNA that end up turning on genes that cause cancer. (That has not been found yet in XMRV).
Getting to CFS at the end of the clip he called the association with CFS 'very exciting' and said it was a tentative correlation but then stated he still felt it was 'very exciting'. (Two 'very exciting's in two sentences.....) He then made a very strong statement about the possible link between XMRV and ME/CFS saying "this is the kind of disease that a retrovirus like this might cause". (Contrast that with Dr. Reeves, Dr. Wessely, Dr. White and Dr. Lloyd statements that ME/CFS is NOT the type of disease that a retrovirus would cause) and then followed up with 'we could easily imagine it could be the cause of the symptomology of this chronic fatigue syndrome". Then he kicked the door wide open stating "I think in the grand scheme of things there's the potential that alot of diseases that we don't understand will ultimately be attributed to viral infections. This would be one of the most exciting and clear cases if it comes to pass". Whew!
Did I miss something in his earlier statements or does he sound alot more positive about XMRV than before? It's always easy to read too much into these short interviews but one has to ask oneself if something has gotten our rather cautious retroviral expert a bit more excited on the future of XMRV and CFS. Dr. Goff is a professor at Columbia University.... there is an XMRV study going on there...(?)
Cort,
Thanks for having the courage and integrity to lay this out as you see it. I agree that the WPI and Dr. Mikovits deserve the lion's share of the credit and that it is a shame and a loss for the CFS community that she isn't going to be presenting. Ironically, the scientific community is extremely conservative (read - slow to change, even in the face of substantial evidence). Old paradigms have to be overturned no matter how half-baked (and the CDC's history with CFS is at best, half baked). Stepping out of line and engaging in advocacy will always get you a very strong slap on the wrist. And yes, it is always a lot like high school.
As for the conference, I suspect that Dr. Ruscetti is well aware of the Mr. Switzer's talk and something tells me that he is more than prepared to address the 'absence of evidence' claim with his own 'evidence of methodological differences' that account for the CDC's inability to detect XMRV. Mr. Switzer would do well to be very careful about what he claims he's incapable of finding. Unfounded assumptions could leave the CDC looking more than a bit inept while revealing a strong confirmation bias.
In order to break the rules, you have to understand them in all their nuances and then have the power to get away with it. Dr. Mikovats just doesn't have that kind of power. Neither do patients. If they did, this forum might not exist at least in its current purpose and patients with this severe neuroimmune disease would be getting appropriate medical treatment, possibly even a cure.
Quite frankly, getting mixed up in the autism movement hasn't helped her case. Two, count em, two patients with autism (which is a spectrum) who may have tested positive for a retrovirus (unpublished data) that has yet to be proven pathogenic in any disease is hardly earth shattering science news. (yes, autism is terrible, but joining forces with another group of people who are stigmatized gives people yet another reason to infer that all patients are nuts.)
As for unpublished data, the peer review system exists for a reason. Like most governments it is not a perfect system and it can be used for both good and self-serving interests.
I agree it is not tactically smart from a CFS perspective to have got involved in the autism debate but I think things have got overstated here!
In the Osler's Web entry devoted to Alter, Hillary Johnson writes, ""This the worst public health crisis in our history and the government has no right to stop [this paper's] publication," Mikovits said recently.'"
If Judy Mikovits really believes that this is the worst public health crisis in our history, she has been relatively restrained.
I don't think she would have evolved or articulated this view if it weren't shared by the Ruscettis. I suspect she knows alot more than she is saying. And what she knows is pretty dire.
It's OK for Alter to leak info on his unpublished work, but Dr. Mikovits can't? Sounds a little sexist to me.