Friday, December 17, 2010

Amy Marcus - WSJ versus NY Times

On Wednesday the Patient Advocate read both the WSJ and the NY Times - as is his usual habit. The PA noticed that on page 2 of the print edition of the WSJ there was an article by Amy Dockser Marcus on the recent FDA advisory committee recommendation to restrict ME/CFS patients from donating blood. The journalist Amy Marcus continues to report on this story, on every step of this unfolding disease drama. She (as well as the Patient Advocate) has a sense, an instinctual feeling, of where this is all going. In the meantime, she, along with her editors, is willing to take a chance and cover this story in a journalistic fashion, believing that there is still an audience at large out there who will follow this story - and a belief that the audience will grow in time, as the real-world situation develops and the coverage expands.

As far as the Patient Advocate can discern, Amy Marcus of the WSJ has attended all the major XMRV ME/CFS events -including the August XMRV one-day conference at the Whittemore Peterson Institute in Reno, the CFSAC meeting in DC and the recent FDA Blood study advisory group in Gaithersburg, MD. Amy Marcus' background orients her towards science and its application to disease. Why she has this "inclination" is anyone's guess. This inclination of hers - this instinct to commit to a fascinating story with fascinating people - is going to greatly benefit ME/CFS patients. Amy Marcus is doing the most of any person in the journalist world to promote both an awareness and a serious discussion of these important disease issues.

All this is going to assure one thing: Amy Marcus is going to win another Pulitzer prize for her coverage of XMRV and XMRV-related illness. Because the government has put the kabash on research into this illness, progress is slower than it should be. For her storyline to take hold, the research must advance to the point where she will be able to characterize the illness with patient, advocate and clinician interviews. Once that occurs, and it is not going to be in the far distant future, she will have the human element that she needs to elevate this story - the human suffering, emotional toll, salvation, and redemption. Reporting on absurd scientific squabbles has only so much human interest quality. It is the patient' and their suffering that are of interest, and her story line needs to get there for her efforts to reach the level of profundity - and win her another Pulitzer. Let's wish her well.

Meanwhile the Patient Advocate also reads the NY Times. Recently, in the last ten years, this habit has begun to flag. The NY Times is hardly the newpaper it used to be, hardly a newspaper at all in that it has descended into rank partisanship, is poorly written and provides shallow coverage. All those elements that are strong in the WSJ - arts, music, theater, book, architecture, human interest - have gone completely in the tank with the NY Times. Their coverage of the association of XMRV and disease has been abysmal. They have treated it, as best, as a news story and reported the news - without actually following or developing the story. There is a difference between news reporting, and journalist coverage, and it is well illustrated in the great divergence in these two newspapers.

The one larger ME/CFS "coverage: in the NY Times coverage was on the virus-hunter (lame term) Ian Lipkin - and it was just a set-up. In response to this article the Patient Advocate sent a letter to the NY Times. It follows here:

"Thank you for your article on Dr.Ian Lipkin. Dr. Lipkin is obviously a remarkable researcher. It did not escape the attention of this reader than the gist of the article is left to the last paragraph. Dr. Lipkin has been hired by the government to straighten out the discordant research regarding the new human retrovirus in its association with ME/CFS. This is a set up. Dr, Lipkin has been put in charge of substantiating what has already been substantiated by the Lo/Alter paper of September 2010. This task, the outcome of which is entirely predictable, will be another feather in Dr. Lipkin’s cap. Meanwhile the NY Times has missed the main story. The article should have been written about Dr. Judy Mikovits and Vincent Lombardi of the Whittemore Peterson Institute who wrote the Lombardi et al in the October 2009 Science magazine. It was these scientists who did the original astonishing work in the association of the retrovirus XMRV with CFS/ME (and potentially other neuro-immune illnesses.) They are the real heroes of this unfolding disease drama."

This letter went unpublished.

In response the Patient Advocate received this email (with attachments).

Dear Professor Cairns:

Many thanks for writing. I've shared your letter with our writer, Carl Zimmer, and we plan to stay on top of the XMRV story as it unfolds.

Best,

David Corcoran / Science Times

This letter had the following attachments (in reverse order, email addresses deleted by the PA, for protection of the innocent)

Hi david--

This chronic fatigue stuff gets people all riled up. Some people think there's enough proof to start taking retovirals but most experts don't. The writer doesn't seem to get that the two studies he cites found two different viruses so they can't be supporting each other. And Lipkin is not in fact just confirming the september study.

Let me know if you need any more help on this.

Carl

Hey Carl, I need to reply to this reader ... can you give me any guidance? Thanks, David

The Patient Advocate first question was to wonder if this "science" writer thought two retroviruses in these patients was less frightening than one. Noting the difference in bias, literacy and tone from the WSJ, the PA started to write a post on this, but his daughter and son prevailed on him to try to use the "opening" to get their attention. So the PA wrote the following:

Dear David Corcoran,

Thank you for your response. I’m very gratified to hear that The Times intends to stay on top of the XMRV story. It is a complex and compelling one, with ramifications for many.

ME/CFS is a severe, debilitating illness that is estimated to affect at least a million people in the United States, so it is not surprising that people get “riled up” about it, as your colleague rather flippantly puts it. It appears to be increasingly likely that it is caused by one or more retroviruses, that it is contagious and that it is in the blood supply.

The impatience for treatment options on the part of those with ME/CFS is akin to that reported in today’s Times Week in Review article about delays in identifying the efficacy of Truvada as a prophylactic treatment for AIDS. There is concern that once again the delays in substantiating studies and approving treatment will be caused by “a combination of scientific caution and fiery politics.” Like AIDS, ME/CFS is surrounded by longstanding prejudices directed towards those afflicted - and there is currently no approved treatment.

Those who follow XMRV research closely know that two variants in the same virus family were found in humans in these two studies. Whether you call it XMRV or PMLV it is still a gamma retrovirus closely related to MLV propagating in humans. Dr. Harvey Alter himself stated that the Lo/Alter paper supports the Lombardi results – and XMRV has been now found in all of Alters’ own samples (by Ruschetti).

The Wall Street Journal has been covering the XMRV development regularly over the summer and fall. Their most recent article is here. It might be useful to compare your coverage.
http://online.wsj.com/article/SB10001424052748704243904575630700111729446.html

The viewpoint that I expressed in my original letter furthers the discussion of these issues, and should be published. The NY Times - known for its journalistic even-handedness – should avoid the appearance of bias in a matter of such importance.

Sincerely,
Christopher Cairns

This effort did not reach a form of "realization". It was what they call "a waste of time". The NY Times has displayed once again why it is going down the tubes.


14 comments:

  1. I appreciate your writing on our behalf. I may have to read your blog many times because of my fibrofog but I truly appreciate the contents and what you do on behalf of your daughter and us. You make us feel like family. (p.s. luckily you don't have to take care of us too, other then writing for us.)
    Again, thank-you!

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  2. Chris, thank you so much for the recent reporting and analysis. Your voice carries loud and clear at least in the patient population and I hope it reaches the journalists that need to understand what the real issues are.

    Journalists like the ones you have heard of at the NYT are outsiders and don't really seem to care to become insiders.

    People like Hillary, Mindy and Amy get it. Oh, and you too!!!

    Happy Holidays, Chris. Best wishes.

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  3. Excellent persistence, PA!

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  4. Is it just me, or is the NYT only corporate interested? They never seem to care about the common man to me.

    Thanks for highlighting this fact.

    Hoping the holidays are calm and your angel daughter has HOPE for the coming year...

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  5. You are absolutely calm and persistent, and that's the only way to accomplish anything with this illness. In my case, I got on disability after two-something years and the filing of (literally) a hundred documents. They finally gave in because I simply wouldn't go away. Every day they (my refusers) opened their mail and e-mail, there I was again, polite but firm. Finally they realized the best way to make me go away--and that was to give me what they knew I really deserved. I was put on disability the day before I was due to go to court.

    But you do this kind of thing on all fronts, all the time, in addition to the constant care of your daughter I admire you more than I can say--for so much, but most recently for this, and for your questions to the mysterious Dr. Stoye.

    You inspire more people than you know. THANK YOU. Blessings to you, your son and especially your beautiful daughter this holiday.

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  6. If memory serves (and many times it doesn't) I think I read that Amy Marcus's mother died of a rare cancer that offered no treatment options. Perhaps this is why she has taken up our cause.

    Thank YOU, Christopher Cairns, you can't imagine what delight I get in reading your blog!

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  7. Thank you, Patient Advocate. I hope your crystal ball was working when you said this: "All this is going to assure one thing: Amy Marcus is going to win another Pulitzer prize for her coverage of XMRV and XMRV-related illness." Amy Marcus is doing excellent work covering XMRV research and the resulting illnesses.

    I think if you keep writing the way you have been, Chris, you will deserve a Pulitzer as well. Thank you for your work.

    Patricia Carter
    XMRV+, 24 years M.E.

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  8. chris:

    not sure if u have realized but besides being your daughter's PA you have become all of our PA.....thank you!!!!!

    If I knew you I think I would love you....but right now I just really really like you and respect all you do for us.

    take care

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  9. another proud member of the "Patient Advocate for President" fan club. -- rivka

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  10. Your untiring focus is truly amazing. Like everyone else who has commented, I thank you for all you have done and will do for those of us with the illness.

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  11. i want to thank u for speaking up for those of us
    who are to sick now to do that.
    thank uuuu & Huge Blessing's
    marie moore

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