Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

[charityfundraiser]

Does anyone have subscription access to this article?

www.sciencemag.org/cgi/content/summary/329/5987/18

 

[julius]

I hadn't even thought about the fact that Science would be getting on this. Seems kind of obvious now that I think about it.

This is a good crew to have on board.

"XMRV Frenzy"....in 'Science'!!

.....oh yeah...here we go, it's gonna kick of now baby!

 

[julius]

Please somebody post the full text

 

[julius]

Check out the front page of the Science website.

http://www.sciencemag.org/

Judy Mikovits!!! Top of the news of the week section!!! Front Page!!!

This is the journal that asked WPI to remove 'CFS' from the title of their paper.

Now we're front page news!!

 

[ahimsa]

I'm not 100% sure, but I think this forum message has the full text of the science article mentioned above: http://www.forums.aboutmecfs.org/sh...RV-paper-ON-HOLD&p=97275&viewfull=1#post97275

But it could be a different article.

 

[CBS]

Its a two-page editorial comment:

Science has learned that a paper describing the new findings, already accepted by the Proceedings of the National Academy of Sciences (PNAS), has been put on hold because it directly contradicts another as-yet unpublished study by a third government agency, the U.S. Centers for Disease Control and Prevention (CDC).

Sounds like Science thought the Alter paper had been accepted and was pulled back.

 

[usedtobeperkytina]

Seems that is the case. If I have it right:

submitted, reviewed, approved.

DHHS asked to be held back. Was. PNAS got nervous, asked for more review. Got it. Some recommendations to do a few more things. FDA and NIH are.

Tina

 

[CBS]

Three other groups, two from the United States and one from Europe, have also reported negative findings at meetings, says Kim McCleary

Patients have become a loud voice in the scientific debate as welland its taking its toll on scientists who dont support the XMRV hypothesis. Its ghastly, says retrovirologist Myra McClure of Imperial College London, the lead author on one of the three published studies that came up
empty-handed. Ive had people writing me, and I quote, that I dont know my arse from my elbow, and that I should be fired.

Nothing else that I haven't seen before. It's actually about a full page in length.

Somewhat telling that there aren't any comments by names like Coffin, etc. I suspect that they would rather wait and see what comes of the FDA paper. Still, nothing about the withdrawal of a paper after acceptance being unusual (although we've heard from others that it is quite unusual).

 

[CBS]

Please somebody post the full text

Then they'd take away my account.

 

[xanadu]

I have to say that this is scary:

Ive had people writing me, and I quote, that I dont know my arse from my elbow, and that I should be fired.

The article continues

"I feel bad for the scientists, because it's true, we are a very angry community," says Wilhelmina Jenkins, a physicist living in Atlanta who has had CFS since 1983.

 

[garcia]

Why is "Wilhelmina Jenkins" giving that ridiculous quote? What scientists exactly does she feel "sorry" for? Maybe she should reserve her sympathy for the patients who have been so badly let down not only by their governments, but also by their so-called advocacy organizations. Myra McClure is a big girl. She can take care of herself. Rather than focussing on patient-anger I suggest that "Wilhelmina Jenkins" focus on the reasons why some patients might be angry.

 

[jspotila]

Why is "Wilhelmina Jenkins" giving that ridiculous quote? What scientists exactly does she feel "sorry" for? Maybe she should reserve her sympathy for the patients who have been so badly let down not only by their governments, but also by their so-called advocacy organizations. Myra McClure is a big girl. She can take care of herself. Rather than focussing on patient-anger I suggest that "Wilhelmina Jenkins" focus on the reasons why some patients might be angry.

Ms. Jenkins and her daughter are both patients, and she is well acquainted with why the patient community is so angry. She made very powerful remarks at the public meeting on the CDC's five year strategic plan last year, telling CDC that all we're asking for is that they do their jobs.

 

[akrasia]

Idiot Compassion

"I feel bad for the scientists, because it's true, we are a very angry community," says Wilhelmina Jenkins, a physicist living in Atlanta who has had CFS since 1983.

Why is "Wilhelmina Jenkins" giving that ridiculous quote? What scientists exactly does she feel "sorry" for? Maybe she should reserve her sympathy for the patients who have been so badly let down not only by their governments, but also by their so-called advocacy organizations. Myra McClure is a big girl. She can take care of herself. Rather than focussing on patient-anger I suggest that "Wilhelmina Jenkins" focus on the reasons why some patients might be angry.

Larry Kramer, one of the founders of ACT UP and Gay Mens Health Crisis, wanted an apartment in a co-op where Ed Koch lived. The former mayor of New York refused clean needles to drug abusers, even when it was clear that this would save lives. Koch consented to Kramer's bid on the condition that he wouldn't speak to him, even going so far as to take out an order of protection stipulating this.

Well, one day they found themselves in the mailroom, with a couple of other tenants. Kramer had been walking his maltese. He scooped him up, turned toward Koch, and addressing the dog said, "This is the man who killed daddy's friends."

That was the spirit that animated ACT UP, whose successes are now legend. McClure's behavior was despicable. She took advantage of her 15 minutes of fame to slime the character and work of one of the champions of this illness. I think she got off lightly.

To even entertain the idea that the expression of anger by patients had anything to do with the obscene failure to address this disease is grotesque. The CAA, under the leadership of Kim McCleary up until just a short time ago colluded with the CDC and their board rubber stamped it.

Simon Wessely always whines about patient anger, threatening to leave the field because of it. A consummation devoutly to have been wished.

What was done to us is a crime against humanity and our primary advocacy organization never understood this. How can you not be angry?

 

[Athene]

What Akrasia said.

 

[garcia]

Brilliant post Akrasia! I always knew Ed Koch was a complete scumbag, but had never heard this story before.

McClure did indeed get off lightly, not least because apparently she is a bit of a dragon herself. Certainly not the shrinking violet she portrays herself to be. Feelings hurt by an anonymous email? I don't think so. She got out because she made a mistake and rather than backtrack, she took the easy way out.

I totally agree with you about the CAA. They and their UK counterparts sold us down the river a long time ago.

 

[shannah]

What was done to us is a crime against humanity ..... How can you not be angry?

Exactly!!!!

There's a posting this morning on CFSMEx that another one of our long termers succumbed recently to this dreadful disease. She also was waiting for all this XMRV stuff to straighten out. There is an urgency here for many of us and these political maneuverings causing delays and smoke screens are infuriating.

 

[Angela Kennedy]

McClure's comments are merely ad hominem of the patient community-by-numbers. It's almost like it was read from a manual... "How to construct CFS patients and advocates as angry, dangerous morons".

 

[KnightofZERO]

Wilhelmina Jenkins was a former CAA board member if I am not mistaken. I hope her quote was taken out of context, or clipped, or she was questioned in a leading way.

It ought to have (and hopefully did) at least mentioned that with such a horrific illness that isn't funded for research except in the most minuscule terms... where Federal Scientists seemingly have a right to slander patients as "Mercedes driving nut-jobs" as Straus put it (from memory), in which some people either lose all independent capacities or even die while the very people put in place to deal with this sort of situation sit back and do nothing (or move research backwards), of course people will be (rightfully) angry and anytime a large group of people are angry that anger will get misdirected to some extent.

Of course when a large enough group of people is angry, with very genuine grievances in this case, there is a very good chance a few of them will step over the line from legitimate criticism to personal attacks. It's unfair to judge any group past or present in this way.

Edit: This reminds me of the sort of thing where people are saying CFS patients are taking antiretrovirals like candy whereas only a few (three I think?) out of the thousands in this forum are taking them at all and certainly not before serious consideration.

I think actually more people (still probably not more than a few times that three) would be taking them if we didn't already know that there would be those who would try to push this "narrative" and cast us as misinformed and over-medicated dupes. Patients have shown a huge amount of restraint in my view.

 

[jspotila]

Wilhelmina Jenkins was a former CAA board member if I am not mistaken. I hope her quote was taken out of context, or clipped, or she was questioned in a leading way.

Can anyone with access to the full article (different from what was posted free on the Science website) provide context for the quote? It won't answer the other questions about how she was questioned, etc., but would at least give us context of the article itself.

 

[xanadu]

Can anyone with access to the full article (different from what was posted free on the Science website) provide context for the quote? It won't answer the other questions about how she was questioned, etc., but would at least give us context of the article itself.

The short version is just about the same, but the two paragraphs before the last were removed.

For patients, the stakes are huge. A viral cause would offer a path to better understanding, prevention, and treatment. A paper published in PLoS ONE in April showed that three registered antiretroviral drugs can inhibit XMRV in the test tube, and although many scientists warn that it's premature even to consider them as treatment options, some patients have started testing out different combinations anyway. (One of them is Jamie Deckoff-Jones, a physician from Santa Fe, New Mexico, who is blogging about her experiences and those of her daughter, also a patient.)

Patients have become a loud voice in the scientific debate as welland it's taking its toll on scientists who don't support the XMRV hypothesis. "It's ghastly, " says retrovirologist Myra McClure of Imperial College London, the lead author on one of the three published studies that came up empty-handed. "I've had people writing me, and I quote, that I don't know my arse from my elbow, and that I should be fired." Four months after her first paper on CFS came out, McClure says it was also her last one. "Nothing on God's Earth could persuade me to do more research on CFS, " she says. "I feel bad for the scientists, because it's true, we are a very angry community, " says Wilhelmina Jenkins, a physicist living in Atlanta who has had CFS since 1983.