Thursday, August 26, 2010

Amy Dockser Marcus - Wall Street Journal

The Patient Advocate picks through the newsprint and internet coverage of the recent Alter paper release. Most of it is garbage writing written by garbage writers. The Patient Advocate would wish for more, but this is the world in which we live. In a recent post, the PA indicated several places for readers to get the clear story (the "poop-scoop") about MLV-related viruses and ME/CFS. The single best professional coverage has been and continues to be the writing of Amy Marcus Dockser in print in the WSJ and on the WSJ blog. Check out today's article. Amy Marcus, along with some other people, have "a sense" - not a hope, not a guess - but a sense of where this is all going. The more that she learns about this situation, the more interesting her coverage will be. It is important to send these articles to family and friends as they tell the real story of MLV-related viruses and the WPI with clarity and specifics.

The Patient Advocate wants to republish an older blog post on Amy Dockser Marcus in order to underscore the importance of her writing and the potential weight that this coverage can have - provided it reaches the correct audience. The Whittemore Peterson Institute and their cooperative institutions need all the help that they can get in the public relations field. The WPI is a small entity - a few people really - and the ME/CFS world needs to be educated about the WPI's unusual place in this world and their singular efforts to change ME/CFS forever. If you have not seen the WPI videos on youtube, see them here.

Patient Advocate post from 2/16:
"My original intention of writing this blog is as stated in my profile. I want to write about particulars - the nitty gritty - that might benefit other Patient Advocates (or patients) who are dealing with CFS/ME. I hope to get back to this soon. In the meantime, events in the real world of CFS/ME research have overtaken my Patient Advocate world, and I feel compelled to write about them. I see these recent movements as being key to a clarification of this illness and of how it has been treated - really mistreated - for the last 25 years.

Late in the day on July 15, 2010 a blog was released by the WSJ about the webinar yesterday on XMRV. It was written by Amy Dockser Marcus.

For those who follow the discussion closely, yesterday's webinar itself was not very illuminating. (Vincent Racaniello was dead wrong implying that treatment possibilities could take 15 years - and he did a great disservice to throw that figure out there. Is he an idiot?)

The fact that an article was written about the webinar was remarkable. Someone is following this situation closely. Very little is written in the mainstream press about CFS/ME. The occasional stories are characterized by having 15-25% factual accuracy. Instead these articles, written by "unformed" brains, spread a great many falsehoods, often discounting the benefit that the article might bring. Most reporters do not understand the nature of CFS/ME, nor do they have the capacity to "care". So they write shit.

This gal Amy Dockser Marcus is different. Like many WSJ journalists, she can write. As a reader of newspapers (As Baby Doll said, "I am a magazine reader"), I know that the trade of journalistic writing has deteriorated rapidly and that serious practitioners are difficult to find. This particular person - Amy Dockser Marcus - has written a number of times about CFS/ME. Her articles on CFS/Me can be found here and here and here

All of the articles shape the subject in a serious and measured fashion, with a high degree of articulateness. They are written in a fashion that allows for "follow-up" stories as the drama unfolds - and in fact these follow-ups seem to be arriving regularly.

Some of us already know where this story is going.

Please pay particular note to the "comments" on these articles and blogs. Serious writing evokes serious responses. It is worth noting that CFS/ME patients and their advocates are extremely knowledgeable and forthright in their articulations and criticisms of journalistic reporting. There is much to be learned from this patient population and their ability to frame out the problem - and Amy Dockser Marcus does not seem above learning from them. She is open to suggestion. One wonders why?

Today I decided to find out more about this person. Who is this gal who has written more than once about CFS/ME? Is she for real?

What I found in Google was remarkable. Amy Dockser Marcus, a reporter at The Wall Street Journal, was awarded the 2005 Pulitzer Prize for Beat Reporting for her coverage of the physical, monetary and emotional costs of cancer. The list of her articles that lead to this award can be found here.

At this point her background gets even more interesting. Amy Dockser Marcus has written two books. The first one, published in 1997, is The View from Nebo: How Archeology Is Rewriting the Bible and Reshaping the Middle East. The second, Jerusalem 1913 - Origins of the Arab-Israeli Conflict, which I immediately purchased, is here. A compelling interview with the author, here, tells you all that you need to know about the journalistic impulses of this woman. Read it.

Politics aside, the subjects of her books matches her interest in CFS/ME (and other unknown illnesses). In both cases you have situations where people's decisions, calculated or not, have profound implications on future events, and suddenly the subject becomes complex and difficult from all sides. It takes a bit of research to try to figure out what has happened, how things have gotten to this state and how one might get out of the problem. CFS/ME is a perfect conundrum for Amy Dockser Marcus -and the best thing about it is that there now is a "way out" of this illness. Amy Dockser Marcus is well poised to help in this regard and win herself another Pulitzer.

Amy Dockser Marcus has latched onto CFS/ME. This does not seem to be random. This reporter has the complexity and clarity to follow up on the story and report the main points with accuracy and compassion. CFS/ME is sorely in need of such journalistic objectivity. By nature, Amy is attracted to complex issues requiring both emphathy and detachment, two qualities needed to get at the heart of complex issues. These few articles in the WSJ have done more to advance the cause of CFS/ME patients than any other journalistic writing that I have seen, excepting of course those of Hillary Johnson, another very, very remarkable gal.


  1. Patient Advocate, you are indeed one of the best ME/CFS advocates. We can trust that you will tell things the way they are. Keep up the good work. I look forward to your blogs.

  2. Thank you, Patient Advocate, for this reminder of the excellent journalism of Amy Dockser Marcus in the WSJ. You are right, she has a thorough understanding of ME/CFS and research into the illness, along with the nuances of the funding situation. She does have a sense of where this is going, and I am eager to follow what she has to say about it--just as I am always eager to read what you write.

    Patricia Carter

  3. She is doing a good job, but no one comes close to the work that Mindy Kitei at is doing.

  4. To be fair, Mindy does not have to satisfy an editor. Plus, once you make a comparison, it is ludicrous to omit Hillary Johnson. And others, but let's leave it at that. Each has done a tremendous service towards getting this story out in their own voices and to slightly different readership.

    What Amy Marcus writes reaches the most people at the moment. Mindy put together easily the best piece that came out anywhere on the release of the PNAS paper. The important thing is that we're now far enough along down a road Reeves & Wessely likely thought would never be traveled that there's no turning back. It hasn't been enough to have the truth on our side; we now have evidence, and investigative journalists who care.

    Considering this insane disease we're dealing with, and the non-treatments that all but a very few have to offer, we're fortunate to have these reporters, as they are tremendously valuable in helping uncover this ridiculous scandal that has affected us all so severely.

  5. I am tremendously grateful to Amy Dockser Marcus, Mindy Kitei, and Hilary Johnson for their work.

    It's been interesting to keep tabs on the rest of the mainstream media recently. The overall tone has been friendlier. But the true test will come when another inevitable bogus negative study comes out. Will the articles report unquestioningly on the negative results, as they have in the past? Or will they show signs of skepticism?

    I'm not hugely optimistic on that front, but again ... keeping tabs on these guys has been interesting.