NYT article David Tuller

urbantravels

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This seemed like a good one to me - reasonable, balanced. Headline kinds weak but that's a minor quibble. Dateline says NYT but I can't find it on the NYT website yet, it seems the Seattle Times reprint actually made it to the Web first. Thanks to XMRV Global Action on Facebook for a very timely share:

http://seattletimes.nwsource.com/html/living/2013837533_fatigue04.html

The new papers in Retrovirology reported that contamination of tissue samples or other laboratory items with mouse DNA or viral genetic material could lead to false positive results for XMRV, and by extension other MLV-related viruses, specifically when using polymerase chain reaction technology. The technique rapidly produces millions of copies of genetic segments, so even minute traces of genetic contamination can skew results.

"Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome," said the senior author of one of the studies, Greg Towers, a professor of virology at University College London, in a statement released by Wellcome Trust Sanger Institute, the British research center that co-sponsored it.

Other scientists and advocates for patients have sharply criticized such certainty as unwarranted, noting that the Retrovirology papers themselves expressed their findings in more cautious terms. The critics agree that contamination can be a serious issue when using polymerase chain reaction technology. But the new papers, said Eric Gordon, a doctor in Santa Rosa, Calif., who treats many patients with the illness, do not evaluate other strategies besides PCR, as the technique is known, for detecting the MLV-related viruses, like testing for an immune response and culturing the viruses in cell lines.

"The articles make the point that PCR doesn't work that well for these viruses, and then they act like that disproves the whole idea," Gordon said.
 

CBS

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Don't know if Carl Zimmer's absence is significant but I liked the closing paragraph:

“It feels patronizing when the medical establishment says the side effects are too risky and we should keep waiting,” [said a patient of 15 years and former psychologist]. “What that says to me is they have no idea whatsoever how sick people like me have been with this disease.”
 

jspotila

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I'm pretty sure David Tuller has covered CFS before. At least my foggy-holy-crap-I-have-a-doctor's-appointment-tomorrow-that-I-forgot-about brain is telling me that he has.
 

shannah

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also in today's NY Times:
(accompanied by a picture of Andrea)
(P.S.: It's her birthday today! Happy Birthday Andrea!)


January 3, 2011, 7:48 pm The Lingering Mystery of Chronic Fatigue Syndrome
By TOBY BILANOW

Candice Towell for The New York Times

Andrea Whittemore-Goad, who has had chronic fatigue syndrome since age 12, was featured in a Times article last year about a virus that may be linked to the illness.In todays Science Times, David Tuller reports on recent developments surrounding chronic fatigue syndrome, a mysterious illness of unknown cause that may be linked to a virus. In December, a medical advisory panel suggested that the Food and Drug Administration ban blood donations by people with a history of C.F.S., a move that was hailed by many patients as a sign that their illness was finally being taken seriously.

But then, a medical journal published four papers suggesting that key findings in the earlier studies linking chronic fatigue syndrome to a retrovirus, the same family as H.I.V., could have resulted from laboratory contamination.

The unsettled situation has created a quandary for patients with chronic fatigue syndrome and the doctors who treat them. Some patients are seeking to be treated with H.I.V. drugs, which doctors can legally prescribe even though the F.D.A. has not approved them for that purpose. Many doctors and researchers say it is too early to prescribe the drugs for chronic fatigue because of possible side effects, like bone marrow suppression, gastrointestinal problems and liver or kidney dysfunction, among others.

Read the full article here, Exhausted by Illness, and Doubts, then please join the discussion below.

http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/
 

pictureofhealth

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I think this is a good, balanced and intelligently written article and particularly like that last sentence too. I'm tempted to send it to the UK press to show them how to write articles on ME/CFS.
 
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Read the full article here, “Exhausted by Illness, and Doubts,” then please join the discussion below.

http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/
The discussion below this article puts a smile on my face. MMMM, wait maybe an ear to ear grin. :) Very strong and convincing commentary.

Only saw one or two corruption supporters comment on the article. One suggested pajamas would cure poor sleep related to chronic fatigue, and one doctor "Dr. Santana Diego" that is endorsing the psychological causation. (maybe the Doctor San Diego, or whatever his real name is, needs some of the magic pajamas).
 

urbantravels

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My comment is still "awaiting moderation." There *may* have been a touch too much snark, but I thought I kept it pretty general in its import without specifically attacking any other poster. Or they may just be very backed up with comments awaiting moderation.
 

shannah

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One suggested pajamas would cure poor sleep related to chronic fatigue, and one doctor "Dr. Santana Diego" that is endorsing the psychological causation. (maybe the Doctor San Diego, or whatever his real name is, needs some of the magic pajamas).
Love your sense of humour Marc!
 

shannah

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Here's a pathetic piece in McCleans not even getting the name right, calling it CRS. Thankfully there's a link to refer to the NY Times article.

http://www2.macleans.ca/2011/01/04/chronic-fatigue-syndrome-recommendations-stir-debate/


Chronic Fatigue Syndrome recommendations stir debate
Panel suggests banning blood donations from those with CFS

Tuesday, January 4, 2011 11:35am - 0 Comments
The cause of chronic fatigue syndrome, which causes symptoms like profound exhaustion, muscle and joint pain, and cognitive problems, remains unknown, and some researchers have dismissed it as psychosomatic or imaginary, the New York Times reports. Now, a series of announcements have made the issue more confusing than ever for the million or more Americans who suffer from it: on Dec. 14, an advisory panel suggested the U.S. Food and Drug Administration bans blood donations from people with a history of CFS, to prevent the possible spread of viruses that have been linked to it by two high-profile studies. But on Dec. 20, the journal Retrovirology published four papers that suggested those studies results may have come from laboratory contamination. The studies reported that people with CRS showed higher infection rates with a virus called XMRV or others in the same category, called MLV-related viruses. But other teams have recently found no connection between CFS and these viruses, generating confusion.

New York Times
 
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Here's a pathetic piece in McCleans not even getting the name right, calling it CRS. Thankfully there's a link to refer to the NY Times article.

http://www2.macleans.ca/2011/01/04/chronic-fatigue-syndrome-recommendations-stir-debate/


Chronic Fatigue Syndrome recommendations stir debate
Panel suggests banning blood donations from those with CFS

Tuesday, January 4, 2011 11:35am - 0 Comments
The cause of chronic fatigue syndrome, which causes symptoms like profound exhaustion, muscle and joint pain, and cognitive problems, remains unknown, and some researchers have dismissed it as psychosomatic or imaginary, the New York Times reports. Now, a series of announcements have made the issue more confusing than ever for the million or more Americans who suffer from it: on Dec. 14, an advisory panel suggested the U.S. Food and Drug Administration bans blood donations from people with a history of CFS, to prevent the possible spread of viruses that have been linked to it by two high-profile studies. But on Dec. 20, the journal Retrovirology published four papers that suggested those studies’ results may have come from laboratory contamination. The studies reported that people with CRS showed higher infection rates with a virus called XMRV or others in the same category, called MLV-related viruses. But other teams have recently found no connection between CFS and these viruses, generating confusion.

New York Times
that's what I got. CRS. can;t remember stuff

I recognize all the symptoms. cognitive problems=brain damage. muscle and joint pain=inflammation. exhaustion=mitochonrial dysfunction, adrenal faitgue.

I do like the article though.
 

alex3619

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Hi I just posted the following to the NYT comments:


Hi everyone, lets apply a little scepticism, the real kind.

The biopsychosocial model proposes CBT/GET as a solution to CFS (and claim that ME is the same).

So that means that have studies showing that functional capacity is improved, right? They have validated their diagnostic procedures and received international acceptance, so every scientist uses them, right? They have never had this approach investigated by governments and found it to be a failure, right? They have never had a major study proven to be based on flawed statistical analysis, right? They are all very smart people, and know a lot about retrovirology, right?

Wrong. Every one is provably, factually, wrong. As a skeptic, I go with the evidence. I would love XMRV to be proven as a non-cause. Love it. It would be much better for the world, much much better, although it will be hard for those of us who are sick as we will be waiting for the next breakthrough.

However, the weight of the evidence is clear. There is not one study that has yet shown any part of the original Lombardi findings is wrong. Not one. Those who attack the findings pick on one point and go to great lengths to show it might be wrong, only might be. They then ignore the rest of the evidence. I agree with what I recall as Coffins original statement (probably paraphrased, my memory is bad):: "This is as good a first paper as you will ever see."

Anyone going by the evidence has to take XMRV seriously. If you think it is wrong, get behind good scientific studies to test the theory. Without proof, its not skepticism, just wishful thinking. I want it either proved or disproved, I don't care which except for one thing: if XMRV is causal or co-causal then we are very close to medically sound treatments.

Its also really nice to see the media doing some careful reporting on this issue: kudos to the New York Times.

Alex Young, aka alex3619
 

justinreilly

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Happy New Year everyone!

I agree that the NYTIMES article was good- at least as far as mainstream 'CFS' reporting goes.

However, I am just getting beyond frustrated with the media not getting it right, so I've started writing to editors and authors of articles. NYTIMES, like all other media, make it very difficult to actually contact anyone in their org., so I just have to send it to some email addresses i can find and ask them to read and forward to the author and other editors. I think that doing this (in addition to posting comments), is more effective than just posting a comment. I hope you all can join me in writing to the Times. Below is the text of my email. unfortunately all the underlining, bold and italicizing was wiped out, so it sounds a little more sane. :D

To: executive-editor@nytimes.com, letters@nytimes.com
Subject: "Exhausted by Illness, and Doubts" By DAVID TULLER Published: January 3, 2011

Please also forward to the author
David Tuller and
the Health Section Editor

Dear Sirs,

I have never written a letter to NYTIMES before though I grew up reading it. I would not be writing if it were not extremely important. I must write you because of my frustration with some of your reporting on ME ('CFS'). This is an extremely important issue and deserves much more attention and attention to detail. Media in general have done a horrible job reporting on ME, so it is not you alone. In fact, I will say that next to WSJ and Newsweek, NYTIMES has done the best job by far in reporting on ME of any major news outlet, but that isn't saying much.

This is quite a good article; though of course I have to say for the millionth time that calling ME "chronic fatigue" is exactly like calling AIDS or Leukemia "chronic fatigue". Please, NYTIMES is the paper of record; do not let yourselves fall into the trap set for you by CDC by calling this "chronic fatigue." I understand your calling it "CFS" (though this is a highly inappropriate term). But please never call this mere "chronic fatigue" w/o the "syndrome."

These Retrovirology papers are pure lies. That is 100% settled and 100% patent on the face of these studies. That should be the real story reported here. These charlatans showed that MLVs can cause lab contamination. Every scientist already knows that. To take that redundant "finding" and say that means XMRV definitely does not cause ME is a lie. WPI, Cleveland Clinic and NCI all showed in Science by several methods in addition to PCR- antibody, culture, etc that XMRV was present. You yourself reported this in the article. It is biologically impossible for a person to have an antibody response to a lab contaminant. When these papers came out they were criticized by many science oriented people who were broadly "anti- ME" as being overkill- that PCR was sufficient, so why the heck were the authors also using all these other methods rarely employed. Now these Retrovirology papers come out and show that sloppily done PCR is not sufficient without more- a 'finding' which actually supports the methods of the original Science paper and they have the gall to actually say that this 'finding' refutes the Science paper's method! Is it not blindingly obvious to you that these papers and press releases were patent lies meant to serve insurance companies at the expense of science and health?

Please contact me to discuss this further. Truly, there is no excuse for not reporting this core truth of this story.

Justin Reilly, esq.
 

dipic

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The discussion below this article puts a smile on my face. MMMM, wait maybe an ear to ear grin. :) Very strong and convincing commentary.

Only saw one or two corruption supporters comment on the article. One suggested pajamas would cure poor sleep related to chronic fatigue, and one doctor "Dr. Santana Diego" that is endorsing the psychological causation. (maybe the Doctor San Diego, or whatever his real name is, needs some of the magic pajamas).
Heh, and one of these tools has been trolling XMRV/CFS articles for nearly the past year, assuming it's the same "Skeptic" (a fairly safe assumption, despite the commonality of the name.)

I remember about, oh, 8 months or so ago when they were twice as belligerent, rude and condescending (if you can believe that) in their comments. Now they claim to have ME/CFS patients' "best interests at heart." :rolleyes: What a joke. :D Their panic and desperation at this point is palpable and frankly, quite sad. Not that I feel an ounce of sympathy for them, nor will I when they get run over by the train of truth that they're moronically standing on it's tracks, eyes closed and ears plugged as it heads their way. (Forgive the poor grammar here... mind feels like it's melting a bit today. :mask:)

I also must say that despite the fact that there are only a couple detractors and personally find myself simply ignoring them these days, I am very impressed with the quality and quantity of the comments made from patients and advocates on the article. It makes me hopeful and proud to be in such good company. :Retro smile: