Friday, July 16, 2010

Amy Dockser Marcus - an unusual journalist

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 remarkable gal.


  1. I thorpughly agree & what a great post! Wow though, i had no idea of amys award winning history so thxs for that! M.e sufferer, Michele krisko in the US,who has suffered for 17 yrs suggested to many of us on facebook to comment or thank the wsj for their coverage 2wks ago. I asked my friends in the uk to do the same and posted amy's email address. Since then many thank you emails were sent to Amy to show our appreciation that she is covering the story. It is important that we recognise who is fighting our corner & acknowledge them. Journalists like this are very hard to find!!!! Thank you for Acknowledging Amy & her great work!!!

  2. P.s - I hope that Amy gets to read your post about her, have u emailed her?

  3. I've noticed her as well. It will be interesting to read her articles to come.

    As an aside, I'd heard something about how treatment possibilities could take 15 years, though I didn't know the source. Why do you think he's dead wrong? I could use a little well-grounded hope.

  4. That is so wrong "15 yrs" and so so damaging for people hanging by a thread to hear any of that! XMRV is a much simpler retrovirus than HIV and much of the work for XMRV treatments/vaccines should be a lot easier than with HIV treatments as most of the preliminary work has been done.

  5. You said:"(Vincent Racaniello was dead wrong about treatment possibilities taking 15 years - and he did a great disservice to throw that figure out there. Is he an idiot?)"

    I agree he is dead wrong. I think, rather than being an idiot, or in addition to being an idiot, he is a status quo supporter, like the CAA, Cort and his forum and moderators there. He is a Plough Horse. These status quo supporters always claim they are being "balanced" when they add someone like Racaniello to the mix, as if every sailing ship needs one anchor dragging the bottom for every sail moving the ship forward.

    Status quo supporters lack the intuition to support their intellect; or they lack the ability to think logically and CONNECT the DOTS; or both.

    Instead of more status quo, we need more of the Race Horse (Dr Mikovits) and more of the Ignitor (Annette Whittemore of WPI); and of course we need to clone the Drs Peterson, Cheney and Bell who have been there for us since the beginning, and we now need younger doctors to step up to the plate, get educated and do the right thing.

    Thanks for shining the spotlight on Ms Markus. She deserves it and we have been needing a compliment to Hillary Johnson for a very long time. Now that the WSJ is interested, we know there must be money to be made off our disease. Bring it on!

    Thank You for being able to connect the dots!

  6. Oreganix,

    I would argue quite strongly that Cort Johnson has done us all a great service by his longtime and selfless work on behalf of ME/CFS patients. I and many other people would not be doing what they are doing but for the fact that Cort Johnson got us thinking in the right direction. Certainly one person cannot be all things to all people, but it is a serious mistake to categorize Cort Johnson in any negative light whatsoever.


  7. The virologist NEVER said it would take 15 years to get to effective treatment. This is entirely a misquote. I have listened to that webinar 7 times and he never said that. He was giving a basic idea of how science works. And the entire things was to give a realistic view to those who are out there thinking they will be on anti retrovirals in a year.

    The only ones who may get that kind of treatment will be those enrolled in clinical trials. Few indeed.

    It is important that people have a realistic view so that they do not become even more down hearted and give out when in a year from now they have no answer or medication.

    No one including all of us here know when we will get answers. I agree it will come faster through WPI since they understand we are all ticking time bombs and because they truly care.

    The quagmire of the entire research system is ineffective not only for us patients but for the researchers themselves. I would hate to be them having to deal with all the red tape, politics etc related to their work. I am sure there are many who really care. They would probably think they hit the lottery if they could get into the WPI and really make a difference fast!

  8. Thank you, Patient Advocate, for another excellent blog post. You are certainly right about Amy Dockser Marcus. She is unusual in the sense that her work is excellent; I hope she wins another Pulitzer for her work on the subject of ME/CFS.

    Warmheart, you are, of course, welcome to wait 15 years for treatment if you wish, but some doctors, including the most excellent Dr. Cheney, are already treating XMRV positive people and having some success. I certainly do not intend to wait ANOTHER 15 years. The CAA and CDC lies have already cost me 25 years of my life by prolonging this illness. Neither they nor anyone they hire for webinars or anything else is going to convince me to go to the back of the bus and wait another 15 years. I want my life back, what is left of it, and I do not intend to wait around patiently until someone else decides it's time for treatment. I deserve treatment NOW and I insist on it.

    Patricia Carter

  9. all:

    I follow Vincent Racaniello's podcast and his blog. If you listen to is podcasts, including a couple/few? on XMRV - at least in part, you will find that Vincent is a very serious and highly regarded scientist who (to his great credit) sincerely wants the public to understand viruses and parasites etc. and tries to put them into a context that the public might be able to understand -- with a little studying!! -these are complex subjects!

    He has been in research for a long time, and he knows that the traditional path for research, understanding the ins and outs of a virus, and then developing methodologies/drugs/whatever to combat those viruses is a very long process through the standard pathways via the United States government agencies and then through the drug companies.

    If you listen to them -- you can understand he's a very good man with a pretty decent heart, his viewpoint is just from a scientist within the system. There's no reason to call him derogatory names -- although he does need to be educated on the history of chronic fatigue -- it's obvious that he doesn't (or at least didn't when he was making some of the xmrv podcasts) understand all the details of the CDC/cfs/me controversy in the 1990s.

    in his last podcast where -- if I remember right - I remember him mentioning XMRV, he said that when he posted his blog saying that he thought that both the CDC study and the NIH study should be both released immediately, -- he said that he had never gotten such a onslaught of responses.. you could tell he was a bit taken aback by this.... Vincent is probably a researcher who has been nicely ensconced in the research bubble for a long time and now he's come out of it by trying to educate the public and he isencountering..........the public!! -- in this!!

    consegura: your podcast is wonderful, thank you for doing it. I've learned immensely from it. We should all just be so thankful you bloggers and the WPI, Pandora, and hopefully, Neuroendocrineimmune Center in New Jersey, etc. .....


  10. I really enjoy your blog and your honest words. Just wanted to thank you; we need advocates so badly who have the strengh to speak on our behalf.
    (Wish there would be a few more who dare to speak up! )
    Your daughter is lucky to have such support behind her, sad that she has to suffer so badly. I know what it means, i have a son with M.E. and i have M.E myself.

    By the way, we have one thing in common, the love for sculpture.
    Art Global Online

  11. I really enjoy your blog, too. I just started reading CFS blogs. Now that I realize how much collective knowledge is out there, I'm addicted!

    I'd like to know if anyone else has tried what I'm trying, which is fulvic acid. It's one of the humic acids and it comes from ancient forests that have decayed in to peat bogs and dessicated. It is a purely organic, very complex molecule that seems to aid absorption of good stuff and adsorption of the bad. (Adsorption prevents absorption - cool, huh?) As such, it is strongly nutritious and detoxifying, and best of all, strongly antiviral. Research shows that it prevents viruses from entering cells so they can't replicate. NIH says it works against HIV and influenza. Other studies show it kills herpes, hepatitis, hemorrhagic fever. More but I don't have very good recall. You go see for yourself.

    What convinced me to try it, though, was someone posted their monthly blood tests for CD4+ and HIV. The HIV disappeared in 3-4 months and the CD4+ levels recovered in about a year.

    If you do try it, be prepared for some detox reactions (mild in my case) and have plenty of purified water (not spring water) on hand to drink. Must be taken away from everything else. Then let me know, because I'd like to compare notes. I want not just a treatment but a cure.

  12. P.S. I'm using the BioAg product because the scientist there has been working with this for 40+ years and also because of the lack of hype.

  13. I was wrong about adsorption -- it means making something stick to a surface.

    My first post got deleted, so I'll just say, way to go Amy. We need more like you around.

  14. Thank you for this little bio of ADM. Reading it I realised that I have her first book. I knew the name was familiar......M.E. brain!!
    Also listened to the XMRV was frustratingly banal I thought, but a good reality check on the world the scientists live in. I am sure they are all doing their best, but for half a day I felt like shaking them all! I wanted them to understand that there are real people out there waiting for results to become actions. It all felt unfittingly slow.

  15. From One Mother of a son with CFS to One Father of a daughter with CFS; We Understand.

  16. Impressed with Amy Dockser Marcus from an interview with Terri Gross, I picked up a copy of Jerusalem, 1913, too. her research takes complexity and teases it apart so that a reader can see each of the strands of a story and how those strands come together to reach the current puzzle.

    Now that I have read your blog I will follow this issue more closely. Thank you for posting this.