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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Yes, lie down, you always win in the end when you do that. Really great advice. No one do anything. Nothing to see, move along. XM..... don't bother to know, better to be a sick hermit. The system works, and always has, your energy will return.
Yes, lie down, you always win in the end when you do that. Really great advice. No one do anything. Nothing to see, move along. XM..... don't bother to know, better to be a sick hermit. The system works, and always has, your energy will return.
Who ever said that you said that?
Yes, lie down, you always win in the end when you do that. Really great advice. No one do anything. Nothing to see, move along. XM..... don't bother to know, better to be a sick hermit. The system works, and always has, your energy will return.
Again, who ever said you put that? And where is the 'our'?
Anyway, Mikovits has been stopped from presenting at the XMRV conference, and Ruscetti is kindly stepping in. They are trying to remove the WPI from XMRV research. If you want this changed, ask the committee.
And I aim to keep that promise. However, Judder, you are not playing fair with V99. She is being tenacious and is on the attack and I respect and appreciate that in her very, very much.
I ask that you both leave eachother alone. Judder, please no more comments directed at V99. She is being a hard-core advocate and we must have people like her or we get no where - and we have been getting no where for the last 30 years.
Again, knock off the personal comments and deal with the situation. This is a critical issue to V99 and ME as well. If we don't go after them each and every single time, they nibble away and then they win.
V99 will do as she sees fit and I am certain that her methods will be super careful and mindful of the whole situation - including all your arguements. I too have sent emails to a number of people about this situation including the workshop people. But, being an American, I have not been as "ultra gracious" as the Brits - tactful but straighforward and forthcoming. And I do expect my questions for them to be responded to, even if I have to get on the phone on Monday (a good idea, think I will). If US Federal money is being spent on this workshop then I, as a taxpayer, have a right to know what the hell is going on with the workshop. I have also emailed the heads of the DHHS, NIH, FDA and CDC. I want them to know what is going on IF they bother to read their own emails. And I am not going to stop emailing the Federal people as I am the taxpayer and THEY WORK FOR ME (and all US taxpayers). And as for V99 and all others being non-Americans: what happens in the US at the CDC and other Federal health orgs affects what happens in their own countries. God knows the Brits have a God-awful fight on their hands with all the sociopaths damaging ME research and the ME sick. I would hate to know the true numbers of suicides from ME in the UK because of these sociopaths.
So, leave V99 alone - take me on, I've given you a whole bunch of things to get testy over. However, again I don't fight with others in the CFIDS community so you won't get much out of me.
With respect for the outstanding efforts you have made in making this site better informed - Muffin.
http://www.facebook.com/pages/XMRV-...clinical-and-public-health-impli/421411181796
1st International Workshop on XMRV: Pathogenesis, Clinical and Public Health Implications – Please Act Now
The 1st International Workshop on XMRV , co-sponsored by the NIH and organized by Virology Education, will be held on September 7, 2010 at the National Institutes of Health in Bethesda, Maryland, USA. The objective of this scientific workshop is to assemble an international group of scientists, physicians and epidemiologists to present and discuss the latest XMRV studies, including topics such as virus-host interactions, cell type tropism, mode of transmission, animal models and the efficacy of current antiretroviral drugs.
While we at XMRV Global Action are very excited about the workshop, we believe the list of invited speakers is incomplete and it is imperative that Dr. Judy Mikovits of the Whittemore Peterson Institute be among the invited speakers. We feel that it is incomprehensible to omit the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with ME/CFS.
The list of invited speakers as of today, July 22, includes:
• Dr. Kate Bishop, NIMR, London, UK - Host Restriction Factors
• Dr. Sam Chow, UCLA, Los Angeles, USA –Viral Integration
• Dr. John Coffin, Tufts University, Boston, USA –Basic Virology
• (Keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA –Prostate Cancer
• Dr. Robert Silverman, Cleveland Clinic, Cleveland, USA –Animal Models
• Dr. Ila Singh, University of Utah, Salt Lake City, USA –Pathogenesis
• Mr. William Switzer, CDC, Atlanta, USA –Assay Development
• Dr. Frank Ruscetti, National Cancer Institute, Frederick, USA –Chronic Fatigue Syndrome
• Dr. Ellen Sparger, University of California, Davis, USA –Vaccine Development
( http://www.virology-education.com/index.cfm/t/Program/vid/1FFCB7B8-FB88-C1D2-92C420E3BCEB0FB0 )
We are urging all our members to send an email to the Science Committee contact, Wilco Keulen wilco.keulen@vironet.com from Virology Education, and Dr. Francis S. Collins francis.collins@nih.gov, Director of the NIH, to request that an invitation be extended to Dr. Judy Mikovits as a featured speaker. We also encourage you to send this message on to your friends and family. It is up to our community to ensure that ME/CFS and XMRV continue to be an important part of the conversation.
Below you will find a sample letter that you are welcome to use.
Thank You!
(sample letter)
To all involved in the 1st International Workshop on XMRV,
Congratulations on mounting the 1st International Workshop on XMRV. Bringing researchers and medical professionals together in this way is a critical step in understanding XMRV and its impact on public health and in moving the state of the science forward.
When this workshop was first announced I noticed Dr. Judy Mikovits was included as part of the workshop’s Scientific Committee. However, I was very surprised to see that she was not one of the speakers, let alone not the keynote speaker.
It was the October 2009 publication in Science of Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome that reignited and expanded global interest in XMRV as well as the role it might play in disease after its initial discovery in some prostate cancers by Silverman and Klein et al in 2007.
This paper, linking XMRV to ME/CFS, was authored by scientists from the Whittemore Peterson Institute, National Cancer Institute and the Cleveland Clinic. The National Cancer Institute is represented by Dr. Frank Ruscetti and the Cleveland Clinic is represented by Dr. Robert Silverman. However, Dr. Judy Mikovits from the Whittemore Peterson Institute is nowhere on the program. The omission of the leader of the team that showed XMRV to be a new human exogenous retrovirus firmly associated with CFS is incomprehensible.
Furthermore, while I welcome and encourage the involvement of the CDC in research into XMRV, Mr. Switzer, the guest speaker on Assay Development, to date has been unable to detect XMRV in any blood samples. While exploring why methods do not work contributes valuable information to the field, so does information on methods that do work.
The original Science paper, along with Response to Comments on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” on methods of detecting XMRV, demonstrate that Dr. Mikovits and Dr. Ruscetti are the leaders in this area right now. They have published studies detecting XMRV in blood and other studies have corroborated these findings. Drs. Mikovits and Ruscetti should also be presenting on "how to find XMRV” and Assay Development.
I do not believe the stated objective of the 1st International Workshop on XMRV “to assemble an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies” can be accomplished without including Dr. Judy Mikovits of the Whittemore Peterson Institute among its scheduled speakers.
I will be following this conference schedule with great interest as it develops. I request, and strongly urge, that Dr. Judy Mikovits be invited to be an important part of this conference and its presentations.
Sincerely,
So, basically muffin, you are asking judderwocky to stop commenting because his position is different from yours and V99's.
This campaign you guys are on is going to have a whole bunch of great scientists getting loads of correspondence. Some of which will be decent and respectful, some of which will be rude and inflammatory.
The net result is that you will alienate the very people who we want to get on our side.
I am commenting because your actions will ultimately affect me. The fewer scientists we have taking on the CFS/XMRV question, the longer I will have to wait before causation and treatments are established.
Please stop annoying and scaring the best researchers in the world!!!!! For god's sake.
Judy M made careless comments and for that reason she is not up to the standards of this workshop. Period. No freaking conspiracy to "shut out" the WPI.
Let it go already!!
No. I am not telling or asking anyone to do or not do what they think is right. I asked Judder to stop with the back and forth with V99. I think I was clear about that and quite diplomatic about it as well.
Sorry, but I am going to do what I believe is the right thing to do. You and Judder and others do what you believe is the best thing to do - apparently not fighting this one.
I got an email response from an idiot at the Emory Mind-Body program that stated that we CFIDS/ME sick were fighting with eachother and that weakened our arguements, etc.. I responded that was not true and that we were fighting against Reeves and the waste of the CDC/CFS program. Well, that idiot was correct. We are fighting eachother and this leads to a "divide and conquer" situation and we can not afford that situation at this time. Particularly at this time.
And I too am done with this topic. We shall see what comes out of this workshop.