Sunday, November 21, 2010

Laura Hillenbrand and the WPI

With the publication of her remarkable book "Unbroken" Laura Hillenbrand has once more emerged out of the shadows of her illness. The PA is enthralled with this book, and he is in the middle of reading it. However this post is not about the book; instead it is about the author and her illness – and the research into and the advocacy of her illness. The Patient Advocate feels that he has license to speak of Ms. Hillenbrand’s illness, as she has been open in publicizing it.

Laura Hillenbrand became ill in 1987 and has been housebound or bed bound ever since. Her list of symptoms (no doubt incomplete) culled from the Internet is listed here:

extreme exhaustion
cognitive problems
daily flu-like symptoms
night sweats
light sensitivity
constant fevers
unrefreshing sleep
vertigo, a neurological abnormality
weight loss
consistently weak and dizzy (too weak to sit up or talk)
inability to stand (orthostatic intolerance)
inability to recover after exertion (post-exertional malaise)
“brain fog”
vision difficulties

This set of symptoms meets the 2003 Canadian Consensus Criteria of virally-induced sudden onset ME/CFS. This definition can be found here. This is a critically important document.

At the recent HHS so-called "Science Day", Dr. Joan Grobstein voiced her opinion that the above 2003 Canadian Consensus Criteria were sufficient for determining who has this illness (ME/CFS). It is her conviction that the government does not need to spend more money trying to define a disease outline - they already have one. Both my daughter and Laura Hillenbrand fall under the Canadian Consensus Criteria. (In the case of Laura Hillenbrand this is an educated guess on the part of the Patient Advocate. He has not seen her medical records and has no interest in seeing them - as he sees plenty with his own daughter.) They both have the same serious neuro-immune, neuro-endocrine illness. Many ill patients (between 67% and 84%) meeting the CCC guidelines are XMRV or MLV-related positive. They have a retrovirus of unknown pathogenesis.

Laura Hillenbrand is the public face of ME/CFS at this critical time, and has been for some time. Considering her illness state, Ms Hillenbrand has done valuable work as a ME/CFS advocate - appearing on talk shows (via tape) and radio interviews, as well as writing a wrenching account of her illness in the New Yorker in 2003. She has raised awareness of this illness nationally, perhaps more than any other individual. We owe her a great debt of gratitude.

And yet, in spite of all this, the Patient Advocate must strike a discordant note. In the last year, many things have changed in the world of ME/CFS; there has been a dynamic shift. These changes do not seem to be reflected in any of the reviews or interviews about Hillenbrand’s fantastic book.

To the Patient Advocate this seems like an opportunity missed. Here is a chance to bring two threads, two stories together – recent XMRV - ME/CFS research and the major ME/CFS figure with this illness. The public does not need to hear the old stories about CFS. They have digested Hillenbrand’s CFS and found it to be quaint. In the general public's assessment, this remarkable person has to "lounge around" while she writes her books. The public either has no idea or no interest that ME/CFS is a serious, devastating illness – and that there are answers in terms of diagnosis and treatment on the near horizon. This is not 2003. Today ME/CFS is most likely a retroviral-associated illness. We need to find well-known people to raise up this disease. This illness needs to be elevated in order to bring money and funding for research. Out there in the real world there have to be voices connected to this illness who could speak up and broadly focus the issue. We, the patients and advocates, have to find them.

The Patient Advocate would like to see Laura Hillenbrand connected in a real way to the Whittemore Peterson Institute. The WPI is the best bet to unlock her illness and bring her improvement.

13 comments:

  1. I would like her to take on Dr. Mikovits (or any of the other players) as her next subject, and publish an early chapter, or do a short piece for a change, in the New Yorker. I don't know how writers can resist this subject. Kathy

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  2. This is from Laura's interview in The New Yorker after the Science paper came out. October 15, 2009

    http://www.newyorker.com/online/blogs/backissues/2009/10/back-issues-laura-hillenbrand.html

    "How does the news about the Science study make you feel, and do you have a sense of how it has been received in the C.F.S. community?"

    "The C.F.S. community is all abuzz. I’ve never seen people this excited. And it is for good reason. As for myself, I am guardedly optimistic. I’ve been around this block before. The findings are very preliminary and they do need to be replicated. It needs to be demonstrated that this virus is a cause and not a bystander. But, with that said, the findings are stunning. All of us with C.F.S. have long felt that a virus is involved. The symptoms are so viral. You get fevers and chills and aching, a very sore throat, huge lymph nodes, and all the things you would get with flu, times ten, and they never go away.

    "The researchers have said that in a follow-up study, ninety-eight per cent of some three hundred C.F.S. patients tested positive for this new virus. If replicated, that’s a stunning finding, a potential blockbuster for patients. It could be, finally, the thing that makes treatment and, eventually, a cure, possible. But you have to be circumspect with any medical study, and this is very preliminary. We’ll all be waiting eagerly for the results of follow-up research."

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  3. well don't say anything like this to any of her worshippers on the me/cfs forum...you'll be tarred and feathered....most there feel it is enough that she said she has me/cfs in an interview w/the New Yorker...that's good enough and more then we should expect or ask of her (another sign of me/cfs sufferers accepting crumbs as manna from heaven) and we should be thankful/grateful...i obviously disagree and see her not using her celebrity to raise awareness, advocacy and money for me/cfs as a huge waste of her fame.....but shhh you didn't hear it from me...you'll get the hens clucking over there on that forum.

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  4. Laura Hillenbrand is a huge supporter of CAA and has been contacted by many patients with information about the WPI. So far she does not seem to be interested.

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  5. read this thread....ppl on this board HATE CAA but for some reason adore hillenbrand. they are so self righteous they can't even see the contradiction in their adoration

    http://www.mecfsforums.com/index.php/topic,3393.15.html

    particularly robin and Koan's threads....huh???? CAA is bad but a famous writer who has severe me/cfs throws all her support and name recognition behind CAA and she is the greatest thing since the second coming of (fill in the blank)


    they practically burn ppl (Cort Johnson and most recently Otis came under heavy fire for talking abt an advocacy program on PR and this board) on the stake if they come to the board and say anything positive abt CAA yet they admire hillenbrand....for such smart folk, they're not very logical.

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  6. Hi Anonymous. Your link is to a discussion in a nonpublic section. Since you are a member I suggest you join the discussion there. The moderation certainly isn't excessive.

    I disagree with your characterizations. My feeling is that folks really like Laura's work and appreciate her advocacy. Many would love it if she could do more but would understand if she can't.

    There were also comments about people sometimes having crankypants. :-)

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  7. There's a bit of difference between the CAA and an author. One is meant to be doing everything they can to change things, the other is using their position to do what they can. Anonymous, it sounds to me like you want to burn someone. No, well words aren't the same are they.

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  8. I have a 37 year old daughter whose intelligence and talent could be contributing to the world in so many ways, yet she is incapaciated by a disease that almost no one acknowledges as real, so she has the added burden of suffering people's disrespect and ignorant comments, e.g. "I am fatiqued all the time too. Maybe I have it!" (said with a smirk). I have written to Ophrah Winfrey several times imploring her producers to take a look at this disease and bring it to light on her show. Since discovering several years ago that Hillenbrand has CFS, I have often wished that she would pursue a national audience and help bring attention to the need for treatment and, at the very very least, mainstream acknowledgement that this is real and we need money to advance awareness, treatements and a cure.

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  9. I read SEABISCUIT when it first came out and I have been a fan of Laura Hillenbrand since that time.

    I do not think there is really much disagreement here. I respect Hillenbrand for her accomplishments--writing two great books while housebound and sometimes bedbound is no small accomplishment. Would I be happier if she were making donations to WPI research rather than to the CFIDS Assn of America? Yes, but I can understand her position. She is a very busy person, busy trying to have a life and do her work, and she has not spent the time most of us have discovering exactly what the CFIDS Assn does.

    The fact that I would prefer she took a little time to see what her donations are actually doing in no way detracts from my respect for her and for her work.

    I dislike the CFIDS Assn. of America because I believe they are an obstacle to cure or treatment of ME. I also respect (no, not worship)Laura Hillenbrand because of her accomplishments. I see no contradiction.

    Patricia Carter
    XMRV+, 24 years ME
    www.mecfsforums.com

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  10. The Patient advocate is rightly concerned about Laura Hillenbrand's apathy with the WPI and XMRV.

    As for 'Anonymous' posting here asking why do people with neuro immune disease bring Cort Johnson to task for supporting the CAA, advertising a '3 day cure for ME/CFS (the Lightning Process) and slamming Dr Judy Mikovits? Well if you don't know why, then you don't understand the disease ME.

    The people who dislike Mr Johnson are informed and aware of the spin his forum takes on 'CFS' and the 'everyone's accepted' ethos by saying 'I have CFS'.

    98% of people with well defined CFS have XMRV, that is causative for anyone with an IQ over 90.
    For people with an IQ under 90, please go to Cort's forum and ready about threads such as 'TV Static Cured my ME'.

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  11. Honestly, I get just as tired of people worshiping the WPI. They are not perfect and some information will be coming out about them within the next few months that is not positive.

    I don't think its fair to characterize someone as not being a true advocate just because they won't mention WPI. Good God, she is housebound and hasn't been able to leave her house since 2007. She has suffered enough.

    Frankly I'm sick of people throwing other advocates, people with M.E., M.E. doctor's under the bus just because they aren't supporting WPI.

    She probably has good reason for not supporting them.

    Ben

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  12. If it's that important, Ben, spare us the teaser. Otherwise I agree. As Dr. Conant tried to say, It's too easy to lose focus on research, treatment, and cure while we hack each other up over advocacy or our own views. Somewhere it goes beyond holding ourselves accountable to just being self-destructive.

    Most are still livid that CAA let CDC take us for a ride at a very high cost. We should be. But we can't change the past. I think real good has and will come out of what Vernon's team is doing. Sure, I wish she and Mikovits were blood sisters, but the treatment that works for you and I could come from either or both. I've put more money toward WPI, but I'm not about to call CAA the "enemy" at this point. That's not going to improve anything.

    I often don't read Cort's blog because of some directions he's taken. You can't deny, though, that he's not only plugged in, but that his frequent readers feed off each other and act. 'First Brit to tell the world they were XMRV+, the Donnica Moore follow-up to Dr. Oz - check Phoenix Rising. I soothe my ego sometimes thinking he's got members who "get it" even if he doesn't.

    The Brits and Americans didn't always get along in WWII, at the field or the command level. But some people finally said screw it - maybe I'm not in your foxhole, but we'll both keep aiming at the Germans and get to Berlin. That's the mentality Conant wants us to have.

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  13. Hello -- I am very new to the blog scene. I've never had anything so important to write about. But i have to comment here. The gigantic basket of symptoms hit me back in 2000 and have been slogging through the mud ever since - both with CFS and FIBRO. Trying to distinguish from the two is virtually pointless. As of late (for past two years) i've been on Ultram, Lyrica, and a controlled relase, SSRI. These drugs have changed my life. Without them, it's a sick day for me, and i cannot work, play with my son, or help my wife out with household chores. I had tried all the vitamin supplements and "natural" hogwash that's out there and nothing worked but pharma. I hate that i have to take these meds, but cannot live without them (especially the first two). The real tragedy is that i am a man and the entire world frowns on my condition (except my physician). Anybody that says this is a woman's disease is wrong. This has been the most depressing thing I've ever had to deal with in my life... thanks for letting me blog here.

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