XMRV Conference - On YouTube

[VillageLife]

The conference is finding its way onto YouTube,

If you follow this link, there are a few clips to watch..........

http://www.youtube.com/user/5qurple#p/c/C48EFC7D6D7F217A/0/0r7M_ZEjQ-s

 

[LJS]

Thanks for posting this! I re-watched the intro to the Q&A and from the tone of the opening remarks by Jonathan Stye it would seem there was some intense debate in previous sessions as well.

 

[Sunshine]

Stoye is employed by the UK Medical Research Council (MRC). The MRC say ME does not exist and CFS is a psychiatric disorder. The MRC give psychiatrist Simon Wessely millions and have files on ME protected under the official secrets act until the year 2070, when most people with CFS will be dead.

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm
http://www.meactionuk.org.uk/Wessely-axis.pdf

More importantly the MRC regularly refuse to fund biomedical research in the UK into ME/CFS, yet happily fund research into psychological rehabilitation and exercise.
http://www.meresearch.org.uk/information/publications/casetoanswer.html

Stoye, (from the MRC) was a co-author of a recent negative XMRV study (Groom et al), and thus should not have been selected as chair of the NIH Q&Q session and allowed to control Judy Mikovits's microphone due to his researcher bias. Someone impartial not involved with proving/disproving XMRV in CFS should have been selected.

Stoye also cut the meeting videocasted yesterday 1hr short, it was tabled for 120 mins.

It isn't hard to consider why the MRC flew this man thousands of miles to manage a meeting over a disabling condition he believes does not exist as a biological organic disease, and who's funding they give (MRC) goes to psychiatrists who say ME patients associating their symptoms to a virus is hysteria (XMRV is a retrovirus) , and praising Elaine Showalter who said in her book 'Hystories' that legitimiacy of CFS is akin to claims of alien abduction. Also note that McClure's negative XMRV study (of 2 from the UK) has this very man chose his psychiatric patients from his clinic, in which McClure then tested the blood sample and found nothing.

Knowing this, one can see an official complaint should be made, that Stoye was chose to be chair of the Q&A session at the NIH 1st International Conference on XMRV.

 

[LJS]

Mikovits could have talked at any time if she wanted to, she was not being controlled, there were only four mics and five people to talk into them. Stoye did not cut the session short, the Q&A was scheduled for 1 hour on the conference program.

 

[pine108kell]

Mikovits could have talked at any time if she wanted to, she was not being controlled, there were only four mics and five people to talk into them. Stoye did not cut the session short, the Q&A was scheduled for 1 hour on the conference program.

Agreed. When every single post is about a new conspiracy theory with personal attacks it gets really old and not useful. Yes, our community has been mistreated and there has been corruption. It makes me as angry as anyone--but sometime it is time to move on. Not everyone that has a different result or point of view is an enemy or thinks that CFS is not a real illness or is out to get us.

 

[Esther12]

Being employed by the MRC and working on the Kerr study doesn't mean he's a baddie.

I thought he was a bit off with Mikovits at the start... but it didn't seem to affect the session much. I wish we had access to all the gossip from the whole weekend - especially why the 'UK situation' was banned from discussion! When we're left in the dark it's easy to assume the worst of people.

 

[max]

With the (collective) suppression of funding for biomedical research, and, the refusal to acknowledge anything other than a presentation of disputed psychological intervention techniques (at the expense of the wellfare of the patients involved), the role played by the UK government, the MRC and the psychiatrists definately requires investigation.

 

[muffin]

Waste of time for everyone involved. Mikovits actually should not have bothered to be there with people not of her level. Why was that rude @ss Stoye allowed to get away with his little stunts? Was he raised by wolves? Ditto for McClure. Thought she was going to get away from ME asap. Someone remind her she promised she would have nothing further to do with ME/CFS. What a rude bunch of people. Nothing accomplished. As expected.

 

[Mya Symons]

I agree that it seemed that the gentlemen sitting next to Dr. Mikovitz looked like he was trying to keep the microphone from her at the end of the question and answer session. My husband and I watched the videos posted on youtube together. At the same time we both said, "Did he just turn her microphone off?" And then, "Did he just take her microphone from her?" I don't know if that was planned from the start, but it was incredibly rude.

What I took from the question and answer session was that there were a lot of doctors and scientists frustrated that they aren't getting together before they do their studies to agree upon a uniform cohert and uniform technique (down to minute details) to isolate the viruses. I hope this influences any future researchers conducting studies on HGRV to get together with WPI and agree on the details.

 

[ukxmrv]

LJS,

Did we watch the same webcast? Jonathan Stoye controlled the microphone used by Judy Mikovits. You can clearly see him control the placing of the mike and the on/off button (watch for the light). Judy did not have her own mike but the doctors to the left of her did. No one controlled their on/off switch or the placement of it to speak - dis they?

 

[LJS]

LJS,

Did we watch the same webcast? Jonathan Stoye controlled the microphone used by Judy Mikovits. You can clearly see him control the placing of the mike and the on/off button (watch for the light). Judy did not have her own mike but the doctors to the left of her did. No one controlled their on/off switch or the placement of it to speak - dis they?

I strongly disagree, she was not being controlled she could speak at any time; she could push the on\off button on the mic if she wanted to at any time. She did speak her mind a few times, there is no one pulling the strings, she can do and say what she wants when she wants and she did at times.

I viewed Stoye as the Simon Cowell on the board, not willing to put up with B.S. which is exactly what was needed. The only person I agree that was being confrontational and just plain rude was Dr. McClure. The rest just seemed like normal scientist debating about something we still know basically nothing about.

I think people on this forum are too quick to jump to conclusions about people and that only damages our cause. Give them a break or you risk scaring every capable researcher off with this good guy / bad guy non-sense. Not everyone is pure 100% anti-CFS or 100% pro-CFS there are plenty of people on middle ground that are watching the data and trying to make sense of it. Dividing one side into a group of pro-CFSer’s and dehumanizing the other into fire breathing evil emotionless creatures does nothing but divide us and slow or stop progress.

Waste of time for everyone involved. Mikovits actually should not have bothered to be there with people not of her level. Why was that rude @ss Stoye allowed to get away with his little stunts? Was he raised by wolves? Ditto for McClure. Thought she was going to get away from ME asap. Someone remind her she promised she would have nothing further to do with ME/CFS. What a rude bunch of people. Nothing accomplished. As expected.

I also strongly disagree with this. It was a great help to the CFS community for Mikovits to go to the conference and educate people about CFS. If you want our condition to become accepted as a real illness these are exactly the type of people you have to win over and I see the slow shift in the right direction. The longer you attack these people instead of trying to work with them the longer we will be sick without treatment.

Science is filled with people many would call arrogant or rude that is just how it is we just have to work the system we are in and not try to accomplish something we cannot. I was an engineer in my prior pre-CFS life and worked with many of these types; if you want something done fast you play into how the system works and not try and fight an unwinnable fight by trying to change the system, turn anyone who doesn’t agree with you into enemies, and belittle the other side.