WSJ: Amid War on a Mystery Disease, Patients Clash With Scientists

[Cort]

Without this pressure XMRV would have been buried already, just like the first retrovirus discovered in 1991. If the internet had been more developted back then I think you would have seen much more research done, just from the pressured applied by patients. Sorry but being quiet has not worked for the past 30 years, if speaking up and forcing issues doesn't work this time at least we've stood up to be heard.

I actually think it was mostly scientific interest that has driven XMRV and that's because the WPI produced such a solid paper. They showed they found it using PCR, validated that with antibody tests and were able to grow the virus....They were light years ahead of Defrietas in validating the presence of the virus.....and the publicity and media interest was partially the result of a very well done paper appearing in the one of the top journals...everything came together.

Patient advocacy is important too and I think they are very aware of us = maybe more than we think..and even more so after CFS appears on the Front page of the WSJ. ))

 

[justinreilly]

Cort,

I think you're right about the science, especially initially, being spurred by the fact WPI put together such a good paper providing very good evidence of an exciting/alarming hypothesis.

But the only reason the media have become somewhat interested in this story, and indeed probably the main reason Dr. Collins and Dr. Koh have paid attention, is because of individual patients contacting the government and commenting on the internet on both the studies and resultant media coverage.

 

[Snow Leopard]

In comments to the article:

To be fair, I thought Michael Renaldi had a decent point. It is quite likely that not all presentations of CFS are the same thing and assuming that it is will indeed hurt the reproducibility of research.

He doesn't sound completely 'brainwashed', otherwise he would believe that we'd all get better with GET or something.

 

[Cort]

Cort,

I think you're right about the science, especially initially, being spurred by the fact WPI put together such a good paper providing very good evidence of an exciting/alarming hypothesis.

But the only reason the media have become somewhat interested in this story, and indeed probably the main reason Dr. Collins and Dr. Koh have paid attention, is because of individual patients contacting the government and commenting on the internet on both the studies and resultant media coverage.

That only helps. I think the fact that we, as a community, respond to these articles and get them coverage only helps.

 

[glenp]

Wall Street Journal

You can see the WSJ video here

http://online.wsj.com/article/SB10001424052748704005404576176823580854478.html#articleTabs=video

 

[VillageLife]

yeah the wpi were backed up by some big names, NCI and Cleveland clinic - i think dr mikovits has said at the start the wpi didnt have a lab and a lot of the tests were done by the cleveland clinic and NCI.

 

[currer]

Hi,
I have put this on another thread but,
The timeline for the Lo/Alter paper was- sent for review 23rd March 2010
30th June CDC and Lo/Alter papers withheld.
1st July 2010 CDC paper published.
8th July 2010 decision made to ban blood donation from CFS patients in UK (answer to parliamentary question)
23rd August Lo/Alter paper published.
1st Nov 2010 Blood ban imposed in UK

This suggests that while the Alter/Lo paper was withdrawn, its contents and implications were known to interested governments before publication.

 

[ballard]

Google's main news page cites the WSJ article today. Look on the right hand side under "Spotlight." The article will now be seen by millions world wide. All in all, I think this is a good thing. :victory:
http://news.google.com/nwshp?hl=en&tab=wn

 

[slayadragon]

What the article failed to get across is that in some cases, patients' criticisms of what's going on with the science is legitimate. There are specific things that the people who are labeled as "scientists" could and should be doing much better.

Not all of that has to do with our wanting the science to go faster. In fact, I think that most of us agree that some of the science should be going a lot more slowly -- like all those papers finding no retrovirus that were rushed to print.

http://www.youtube.com/watch?v=hOyFbNDxcbU&feature=player_embedded#at=161

There are a fair number of patients in this community who are scientists themselves -- or, rather, who would be using their scientific training to be working full-time as scientists if they weren't sick with this disease.

I'm inclined to think that their input in the process is useful for all concerned. I wish the article had made that point.

Best, Lisa

 

[insearchof]

I actually think it was mostly scientific interest that has driven XMRV and that's because the WPI uproduced such a solid paper. They showed they found it using PCR, validated that with antibody tests and were able to grow the virus....They were light years ahead of Defrietas in validating the presence of the virus.....and the publicity and media interest was partially the result of a very well done paper appearing in the one of the top journals...everything came together.

Patient advocacy is important too and I think they are very aware of us = maybe more than we think..and even more so after CFS appears on the Front page of the WSJ. ))

Please don't forget that Defrietas findings were nearly 20 years ago and there has undoubtedly been a lot of scientific improvements in methodology etc that Lombardi et al was sure to have put to good use. When you consider that, Defraitas finding 20 years ago, was all the more remarkable. Further, Lombardi et al had 20 years worth of scientific developments to draw from -including the RnaseL association and piggy backing onto the findings of Silverman etc.

Also Defrietas was a sole FEMALE scientist going up against the boys club: the CDC. She did not have the backing of the NCI or the ilk of the Cleveland Clinic behind her either. The CDC refused to use her methods of finding that retro virus.

Her efforts meant that retrovirological associations with this illness, where not entirely fanciful and her contribution should not be quickly dismissed.

 

[justinreilly]

To be fair, I thought Michael Renaldi had a decent point. It is quite likely that not all presentations of CFS are the same thing and assuming that it is will indeed hurt the reproducibility of research.

He doesn't sound completely 'brainwashed', otherwise he would believe that we'd all get better with GET or something.

There are subgroups in ME, but he doesn't have a decent point. His point was that CFS is a "wastebasket" of fatigue caused by all sorts of things, none of which will cause it in the majority of patients.