Where's Ian Lipkin???

[its ME Jeff]

Why have we heard nothing from the famed virus hunter? It seems that XMRV is at a point of no return now and not a peep from him. Was this just another rouse by Anthony Fauci and Co. to appease us for awhile? And, who appointed John Coffin and Jonathon Stoyle the end all, be all? This is nothing but a bunch of politial BS and we'll be singing the same song in another 30 years. I guess we have nobody to blame but ourselves. This community is TOOOO fractured and passive!

 

[CBS]

Why have we heard nothing from the famed virus hunter? It seems that XMRV is at a point of no return now and not a peep from him. Was this just another rouse by Anthony Fauci and Co. to appease us for awhile? And, who appointed John Coffin and Jonathon Stoyle the end all, be all? This is nothing but a bunch of politial BS and we'll be singing the same song in another 30 years. I guess we have nobody to blame but ourselves. This community is TOOOO fractured and passive!

No one appointed Stoye and Coffin to be the end all in CFS (except for maybe Stoye).

The Lipkin XMRV study is still moving forward. Research that threatens the established paradigm takes a long time as it is held to a much higher standard than research that simply parrots the limits of what is known.

 

[Jemal]

Lipkin should be hard at work, in the middle of a study. It wouldn't be prudent for him to react at this moment. He did comment earlier on possible contamination by the way: "It is premature to rule out XMRV in prostate cancer or CFS". That was in december 2010, not too long ago. The world hasn't totally changed since then.

This thing is far from over yet, there's still quite a few people that need to speak up. XMRV will only be buried once researchers like Mikovits, Singh, Alter, Silverman, Lipkin etc. agree the virus is contamination or does not cause disease. Or once these people stop researching XMRV. For now several studies are still funded.

Mikovits has hinted not too long ago that all the politics will go away soon. I am not sure if that was a boast or not. I hope it wasn't and that she has some inside information on something...

Also you can't easiliy dismiss something that was published in Science. That's the most prestigious academic journal there is.

And last but not least: there's a lot riding on the study by Lipkin. By many it's seen as the "definitive" answer to this question. But even if Lipkin fails to find this virus, it doesn't mean the end of XMRV. It would be a huge blow of course.

 

[5150]

Why have we heard nothing from the famed virus hunter? It seems that XMRV is at a point of no return now and not a peep from him. Was this just another rouse by Anthony Fauci and Co. to appease us for awhile? And, who appointed John Coffin and Jonathon Stoyle the end all, be all? This is nothing but a bunch of politial BS and we'll be singing the same song in another 30 years. I guess we have nobody to blame but ourselves. This community is TOOOO fractured and passive!

re "this community is TOOOO fractured and passive!

hi Jeff: maybe you have some constructive ideas? or perhaps you can write a brief report letting us know what you're doing about the passivity? thanks.

 

[its ME Jeff]

maybe you have some constructive ideas? or perhaps you can write a brief report letting us know what you're doing about the passivity? thanks.[/QUOTE]

Here's just one idea. We are missing the boat when it comes to educating the general public about this illness. We can never get them to the point of completely understanding how devastating this illness really is if we rely on advocates that have never experienced this illness firsthand. Quite frankly, until you become one of the unlucky ones that gets this illness you will never fully understand. That being said, our voice needs to be one of a vested interest, passion, and a sense of urgency. Look at us now, our main advocacy group, CFIDS Association of America, has a president that has no clue what it means to suffer from hypersensitivity to sound and touch for years, so much so that you have to keep your kids away from you, or have a heart rate that skyrockets to 126 bpm upon simply standing up when just a couple years before that running 3 miles a day was a piece of cake. I can go on and on. Point is, there is no vested interest there. No sense of urgency. If I want to read about the latest CFS news their website is the last place I go to get it. Mainly because it is usually the last place to report it. Shouldn't it be the first all the time? Afterall, what else do they have to do? We are putting trust in that group? Why?
OK, here's another idea. How about going to your local medical college and speaking to the students as they come in and out of their classes to informally educate them on what is currently being researched with this illness. The Last time I went, I simply handed out pieces of paper that simply said "What do you know about XMRV?" I bet a few looked it up after that.

 

[CBS]

Here's just one idea. We are missing the boat when it comes to educating the general public about this illness. We can never get them to the point of completely understanding how devastating this illness really is if we rely on advocates that have never experienced this illness firsthand. Quite frankly, until you become one of the unlucky ones that gets this illness you will never fully understand. That being said, our voice needs to be one of a vested interest, passion, and a sense of urgency. Look at us now, our main advocacy group, CFIDS Association of America, has a president that has no clue what it means to suffer from hypersensitivity to sound and touch for years, so much so that you have to keep your kids away from you, or have a heart rate that skyrockets to 126 bpm upon simply standing up when just a couple years before that running 3 miles a day was a piece of cake. I can go on and on. Point is, there is no vested interest there. No sense of urgency. If I want to read about the latest CFS news their website is the last place I go to get it. Mainly because it is usually the last place to report it. Shouldn't it be the first all the time? Afterall, what else do they have to do? We are putting trust in that group? Why?
OK, here's another idea. How about going to your local medical college and speaking to the students as they come in and out of their classes to informally educate them on what is currently being researched with this illness. The Last time I went, I simply handed out pieces of paper that simply said "What do you know about XMRV?" I bet a few looked it up after that.

Great Job! And if you can't manage to get out of the door, you can always participate in the MCWPA's DOCTORS NEED TO KNOW! campaign. http://mcwpa.org/2011/03/doctors-need-to-know/

My guess is that we all have more than a few doctors that have only heard the "party line" as represented by the CDC, NIH, and CAA (Dr. Fred Gill, NIH 2/22/2011 - "Demystifying Medicine" series).

 

[LaurelW]

"this community is TOOOO fractured and passive!"

Fractured? Agreed. The divisiveness does hurt us. Passive? How about utterly exhausted? It's hard to be an activist when you can barely function enough to get through each day.

 

[Cort]

Lipkin will be speaking on Pathogens and the Blood with Dr. Mikovits on the 29th of March I think. It will be webcast - see thread on the XMRV media forum.

I think Coffin's record, the fact that he has a lab and has been interested and studying XMRV since the beginning is why he is showing up so much. He's been publishing alot on XMRV - so he's going to be there. Notice that McClure was not there - but Coffin was - he was involved in 2 of the studies, I believe.

 

[5150]

"this community is TOOOO fractured and passive!"

Fractured? Agreed. The divisiveness does hurt us. Passive? How about utterly exhausted? It's hard to be an activist when you can barely function enough to get through each day.

Do I ever get that statement. Constantly amazed at the quality and volume of work produced by our members.

 

[5150]

maybe you have some constructive ideas? or perhaps you can write a brief report letting us know what you're doing about the passivity? thanks.

Here's just one idea. We are missing the boat when it comes to educating the general public about this illness. We can never get them to the point of completely understanding how devastating this illness really is if we rely on advocates that have never experienced this illness firsthand. Quite frankly, until you become one of the unlucky ones that gets this illness you will never fully understand. That being said, our voice needs to be one of a vested interest, passion, and a sense of urgency. Look at us now, our main advocacy group, CFIDS Association of America, has a president that has no clue what it means to suffer from hypersensitivity to sound and touch for years, so much so that you have to keep your kids away from you, or have a heart rate that skyrockets to 126 bpm upon simply standing up when just a couple years before that running 3 miles a day was a piece of cake. I can go on and on. Point is, there is no vested interest there. No sense of urgency. If I want to read about the latest CFS news their website is the last place I go to get it. Mainly because it is usually the last place to report it. Shouldn't it be the first all the time? Afterall, what else do they have to do? We are putting trust in that group? Why?
OK, here's another idea. How about going to your local medical college and speaking to the students as they come in and out of their classes to informally educate them on what is currently being researched with this illness. The Last time I went, I simply handed out pieces of paper that simply said "What do you know about XMRV?" I bet a few looked it up after that.[/QUOTE]
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Thanks for replying Jeff, and thank you for your efforts. I was thinking that when Elizabeth Taylor died amid all the publicity about her advocacy for AIDS and HIV, that the many articles that speak about that relationship usually have space for comments at the end. I have put some time into writing in them with brief history, current problems, and govt /insurance roadblocking. I ask "where is the next Elizabeth Taylor " for the ME/CFS pandemic in which our National blood supply is compromised,and indeed the world's blood supply. . . and provide info re the liklihood of this going to plague status unless it is seriously addressed. And ended by saying again 'Where is our Elizabeth Taylor"? maybe "our coming advocate" will read it. Grass roots approach.

 

[Bob]

Update on XMRV Study being led by Dr. Lipkin

http://www.facebook.com/notes/the-c...tudy-being-led-by-dr-lipkin/10150180845200539

What is the status of the NIAID-funded study of XMRV in CFS patients?

Dr. Lipkin's answer: The three lab groups have met and agreed upon a plan of attack. The six physicians who will recruit subjects have also met. The institutions involved have secured all but two of the required Institutional Review Board approvals (not a trivial matter!). We hope to begin identifying patients and collecting samples soon. Everyone is excited about doing this study. (Dr. Lipkin added later to those in attendance that study costs had risen to $2.6 million and that 300 subjects will be enrolled.)

Question submitted by another participant:
Will the study use the Canadian criteria?

Dr. Lipkin's answer: The criteria we're using are very complex. They include all criteria published for CFS, plus additiional criteria established by the clinicians and laboratorians to identify the group with the highest risk for an infectious agent.

http://www.facebook.com/notes/the-c...tudy-being-led-by-dr-lipkin/10150180845200539

 

[markmc20001]

Why have we heard nothing from the famed virus hunter? It seems that XMRV is at a point of no return now and not a peep from him. Was this just another rouse by Anthony Fauci and Co. to appease us for awhile? And, who appointed John Coffin and Jonathon Stoyle the end all, be all? This is nothing but a bunch of politial BS and we'll be singing the same song in another 30 years. I guess we have nobody to blame but ourselves. This community is TOOOO fractured and passive!

I share your same frustration.

It's hard to watch the stuff going on and feeling hopeless as to how to help. It's hard being sick and 20% of ones previous self.

I also think many are sick folks here and can't do anything, but also there are a lot of people who have to sit down and try and deal with the goons at meetings like the SOK and can't come across as too aggressive or they may get uninvited to future events....