Laura Hillenbrand is a New York Times best selling author, and one of the most prominent public figures to speak out about having ME/CFS. She has donated hundreds of thousands of dollars to ME/CFS research, has discussed her struggles with the disease in a hundreds of interviews, and spent a year writing the award winning essay “A Sudden Illness,” which remains one of the best descriptions of ME/CFS I have ever read.
Which is why recent criticism of Laura Hillenbrand and her “failures” in advocacy makes me so angry.
Over the past several months, I’ve heard advocates saying that Laura should use the premiere of Unbroken to raise money for ME/CFS research. Advocates have suggested that she assign her “people” to conduct a public-awareness campaign about ME/CFS by leveraging coverage of the movie. And after the NBC/Tom Brokaw special about the film did not mention the name of Laura’s disease, criticism from advocates became more vocal and more pointed.
I asked Laura why the disease name was not included in the Brokaw special. She told me that she had actually discussed the disease extensively with Brokaw during their two-hour interview. Brokaw and the NBC staff were “immensely considerate about my illness and respectful of my limitations.” When she was given a preview of the script, she even took the time to explain to the fact-checker why the name ME is preferable to CFS. Ultimately, the disease name did not make it into the final version, but that is something beyond Laura’s control. The focus of the program was the film and Louie Zamperini’s story.
Laura’s work to bring public attention to this disease is evident in the New York Times profile article published last week. In extensive interviews with Wil S. Hylton, Laura described the details about living with ME/CFS and her resulting disability. The effects of the disease on her work and her writing process will leave no doubt in readers’ minds about the seriousness of ME/CFS.
Advocates consistently say that we need a celebrity spokesperson, like Michael J. Fox has been for Parkinson’s. But it is not easy to be public about having ME/CFS. Many people with this disease, not only celebrities, stay silent about it because of the stigma and because of everything that comes with being public about poor health. I’ve had people ask me if I’ve tried acupuncture, antivirals, homeopathy, immune modulators, meditation, Ampligen, positive thinking, exercise, weird diets, a warmer climate, or faith healing. I’ve had people criticize me for how I manage my disease and what I say about it. I find it difficult to deal with these sorts of questions and criticisms on the small scale of a personal blog. It’s hard to imagine what it would be like to deal with it from thousands of people like Laura does.
To all the advocates who have criticized Laura for not doing enough, let me be perfectly clear: Laura Hillenbrand is not your bitch. She does not work for you. She has no obligation to you.
Laura’s courage in speaking out has brought more mainstream attention to this disease and its impact on individual lives than anything else in the last ten years. Recognize that while Laura speaks the truth about her life with ME/CFS, this does not guarantee the media will use everything she says. That she has chosen to be so public about having ME/CFS is a gift to all of us. Perhaps we should say thank you, instead of insisting she owes us even more.
*Title inspired by a blog post by Neil Gaiman, in which he pointed out: “George R.R. Martin is Not Your Bitch.”
Laura Hillenbrand and Neil Gaiman are wonderful writers!
It is worth remembering that just as Laura (and other creative types) gather reams of information and ideas and try out lots of different wordings, not everything they gather/produce makes the final cut and the same is true for interviews and media stories (about ME or any subject).
We have little way to know what remains on the cutting room floor or what gets left out of books, interviews etc.
Perhaps we should believe in the best in each other, and not judge each other so harshly.
I didn’t realize that Laura was being criticized. Geeze, hasn’t she been through enough? Thanks for speaking out for her Jennie.
I agree w/Betsy, completely. Is ironic that those who suffer with ME/CFS would criticize another w/it. Laura H. has been brilliant in her interviews, balanced and an intelligent advocate. She does not owe a community anything. Thanks, Jennie. It was via Cort’s link that I became aware of this.
Bravo Jennie! I think Laura brings national attention to our disease in a very classy way. And, she received a PM of thanks from me yesterday.
That’s definitely one of the best titles I’ve ever seen on a blog 🙂
Advocating for ME/CFS when you have ME/CFS is tough. I know that because so few people do it and the results are very uncertain. You can put a lot of energy into and get nothing and sometimes you can change the course of events in a major way.
Laura has done a lot, and she has severe restrictions on her health and she has to carefully parse what energy she has in drips and dabs. I was struck by her statement regarding her next project how tentative she seemed to be about completing it. It was going to take a long time (Unbroken took ten years) and it was going to proceed in bits and pieces.
We would all love to move faster. We would all love to have someone that everyone respects pushing the federal government to go faster. I would love for everybody who has ME/CFS and everybody who is intimate with somebody who has ME/CFS to engage in advocacy. (I wonder what the critics are doing?).
Our healthy advocates, particularly in the US, are few and far between. I can think of Courtney Miller, Mary Dimmock, Denise Lopez Majano, Janet Dafoe – most of whom have to care for ill patients as well.
Just think if we had 10 Mary Dimmocks? That’s all it takes really and quite frankly, I think we have a chicken and the egg problem. Until we have a strong, organized and strategically oriented advocacy movement I imagine many people who have ME/CFS just aren’t going to participate.
We should never get stuck with being upset with who’s not doing what. That’s a huge energy waster for one thing. In the end all you can do is present the opportunity and if people take it up they do and if they don’t they don’t. Thank them for considering it, leave the possibility open if they wish to engage in some point – and move on.
We are where we are – now what to we do?
Re “…. not your bitch.” Well put. I added the following to the Times’ comments section:
This disease was identified as one with severe immune system dysfunction in 1987 — nearly 30 years ago — by a Harvard-led group of physicians. The research was published in a peer-reviewed medical journal. Interested parties at the National Institutes of Health drowned that and other significant scientific data with outpourings of psychobabble for the next quarter centrury, even re-naming the obviously neuro-immune disease — from the accurately descriptive “Myalgic Encephalomyeliti to the misleading and dismissive “Chronic Fatigue Syndrome.” There is no mystery here, no controversy, as often stated by scantily informed observers. Rather, there have been ill deeds aimed at protecting a variety of pecuniary interests to the great harm of Ms. Hillenbrand and one million other American citizens.
thank you for all you said about our brave friend! It is so true, we as patients struggle with so much negative in our lives that amongst one another we must remain supportive and positive!!! I’m adamant about this. be thankful, be kind, inspire .
Amen to that Jennie! Laura Hillenbrand is amazing, I am so thankful for everything she does both directly and indirectly for ME/CFS. My hope is that this movie will make Laura proud.
VERY WELL SAID! The backbiting, criticism, and just plain nastiness spewing from the mouths of some so-called “advocates” and other pundits is just plain sickening. We are ill enough with this disease, we don’t need to be sickened further with this kind of crap! The attacks on Laura are disgusting and just a tip of the iceberg of the heinous behavior of some who open their mouths and spew vitriol. There is no excuse for this type behavior. NONE!
Amen!!
We have been bruised for so long that it becomes hard to resist venting when we feel that someone is in a position to champion our cause. When they don’t do it to our satisfaction we may want to lash out unfairly. It is the health system, from the feds to the bottom who have let us down. Lets keep our vitriol for those deserving of it and embrace our fellow sufferers who like us just want a chance to live a better life.
nicely said!
There is a gutsy article by Laura here that is lesser known. I appreciate all of them. 🙂
http://forums.phoenixrising.me/index.php?threads/laura-hillenbrand-articles-on-me-cfs.11542/
Thanks for sharing that Roy. I had never read it and it is powerful. I think it would be of great help to the newly diagnosed. Will be sharing with one person in particular who has asked me today about how to help a newly-diagnosed cousin come out of denial about what is happening to her.
Bravo! I couldn’t agree more.
You’ll have to excuse me but I had no idea that you had become something of the CEO of the advocacates.
This posting, to me as a retired advocate, feels very much like a slap on the wrist by the headmaster. Very juvenile and very condescending and not needed at all.
I might be retired but I still have a finger at the pulse and nowhere have I read these accusation that you give as an example here. I would like to see the links where this is being said or discussed.
The only thing that I personally have come across was a SUGGESTION from people that it would be nice if we could have Laura as a spokes person. No where was it being said or written that Laura would be obligated to do so.
That would be the same as saying that Jeannette Burmeister’s is obligated to use her outstanding talents as a lawyer for the good of the ME community. Which would be ridiculous. Jeannette gives that freely at the cost of her own health and yes there are people that think they can take advantage of that. But Jeannette is very well capable of making it clear what she will and will not do. Just as Laura is a grown woman and very well capable of making it clear that she does not want to be a spokesperson for ME. That’s her good right. And we as advocates would surely listen and take that into account.
What we do not need however is someone who tells us what we can and can not discuss, say and think. We do not need a CEO or Headmaster who slaps us on the wrist and will again be the cause of unrest and unbalance in the community. I’m deeply offended by your very inflammable posting.
Criticism directed at Laura for not mentioning the words “ME/CFS” in the Brokaw special were voiced in comments on this blog, and I saw it on at least one other blog. Comments that her people should conduct a p.r. campaign were made on email lists that I belong to. This was not a manufactured controversy.
I completely agree with you that Jeannette has no obligation to do more than she can or wants to. She must safeguard her health, and I support her drawing limits to do so. If I heard people complaining about other public figures with this disease, insisting they do more, I would say the same thing as I did about Laura.
Many people make sacrifices to speak out about this disease. That public advocacy takes many forms. And anyone who does this work deserves thanks, not criticism for not doing it “right” or not doing “enough.”
If you feel you’ve been slapped on the wrist and thereby offended, that is on you.
Because if you aren’t one of the people at whom this post is aimed, you have no reason to feel shamed. If you are (and that’s a general “you,” since you, Tink, obviously aren’t), this post should make you feel shamed.
This is a personal blog, no matter how little of it Jennie makes personal, and as such it is entirely appropriate for her to express negative feelings about actual occurrences. She isn’t “telling you what you can and cannot say.” She is calling for the cessation of an unpleasant situation. And if that makes her a CEO or Headmaster, so am I and the other commenters who agree that Laura should not receive harassment on this subject. Because all any of us have done is express our opinion that we don’t like it and we want it to stop.
It is unfair to accuse Jennie of overreacting just because you haven’t seen the kind of ugliness towards Laura that she has. Perhaps asking about the details of what she’s seen rather than assuming this post was uncalled for would help you understand why it was written in the first place. Certainly throwing insults around isn’t helping anything.
Laura Hillenbrand, just by being so open about her illness, has done her part. We need a healthy “personality” for a spokesperson.
But this part is telling:
“Brokaw and the NBC staff were “immensely considerate about my illness and respectful of my limitations.” When she was given a preview of the script, she even took the time to explain to the fact-checker why the name ME is preferable to CFS. Ultimately, the disease name did not make it into the final version, but that is something beyond Laura’s control. ” I do wonder why NBC didn’t talk about her illness. Worrying!
In a comical way – at my expense… – when I read your title, for a second I was not sure if it was directed against NBC, Tom Brokaw, Angelina Jolie and the entire lucrative business around the movie! – or, well, who it really is directed against. It becomes clear right away of course. – For my part I have nothing but respect and gratitude towards Laura Hillenbrand. A piece like “A sudden illness” is not only a form of advocacy, it is a legacy. Thirty years from now ME sufferers will still be able to resort to it to make people around them understand what they are going though. This is invaluable. – But, about the “interview”, though it is just an anecdotal interview, I think everyone has every right to be upset at the omission of the name of the illness (and now you confirm that Laura had nothing to do with that, but to me that was obvious…). It made no sense, quite litterally even: I can well imagine a “naïve” listener, someone who has no idea who Hillenbrand is or what ME/CFS is, after hearing not once but twice that she suffers from exhaustion and vertigo, asking himself: “Well then, what does she have exactly? Why don’t they say it?”… It was odd!!… and downright upsetting. If nothing at all had been said about her sufferings, ironically it would have been more acceptable, but the narration describes her symptoms, and then skips the name. I find it very hard to believe that this was a mere coincidence or a random editing move. A deliberate decision must have been made by someone to skip the name of her illness. Very upsetting indeed…
Being upset about the omission of the name is fine. Being upset at LAURA about it is not. She had no insight into why it was cut. I don’t think we can draw any conclusions about why. It could be a practical reason like: if we name it, we have to explain it, and we don’t have time to explain it in a one hour show that isn’t really about her or her illness anyway. I’m not saying that’s a good and well-justified reason, but it is a more neutral explanation than someone had an ulterior motive of some kind that we need to worry about.
NBC’s cutting away any mention of the ME, Laura’s disease, is emblematic of our problem, not anything Laura has done or not done for the cause. We are not only dealing with a 30 year refusal by the NIH and the CDC to deal responsibly with the M.E. epidemic but also with the collaboration of the media in their actions and inactions. I assumed NBC had cut it out: it’s because they don’t think it’s important and also, likely, they think it’s “controversial” in a way that would negatively impact their show. The journalists who do write knowledgeably about our illness cannot get published in any serious in-depth articles published by the major media outlets. More suppression by the media. Most likely because they get their cues from the medical establishment as to what’s important, what’s trivial. I was impressed that in the NY Times Magazine article they were willing to print as much as they did about Laura’s illness, but it was never going to be a purely advocacy article for our cause. And to be honest I don’t think that the attention Laura can bring to her plight and the plight of those of us with M.E. is going to touch the entrenched negative bias at the NIH and the CDC, nor will it educate primary care doctors, nurses, and other health providers unless the NIH gives marching orders to educate the medical profession.
I too read some of those nasty comments and found them graceless, mean spirited and destructive. From my point of view, Laura Hillenbrand has done a heroic job, not only with her wonderful writing and inspiring subjects, given her extremely difficult form of ME, but also as an example of what a person can do in spite of its grave limitations and suffering. She has also written about her illness and named it publicly, but, in my view, it is not her identity. Her identity is not just that of a sick person who is going to try to attack the world either to punish it for her suffering or to try to force it to fix her illness. Her identity is that of a whole human being who cares passionately about her subjects, each of whom succeeded against impossible odds. That includes the horse. This is where she lives and when she writes those stories as accurately and very well as she does, she is gifting the world with inspiration to try to achieve its (our) highest desires. Beethoven went completely deaf and yet he continued to create music. He suffered deafness but lived completely as a musician. That is where he put his energy, and I see Laura Hillenbrand in the same way. The world is better off that they have lived.
Full disclosure: I did question why ME/CFS was not mentioned on the NBC Show, disappointed with all concerned as were others with this disease. However, Jennie said she’d investigate what happened. I replied, “fair enough.”
I see the explanation and am now very dismayed at NBC’s decision not to mention
our illness and wonder why and who decided it. Was it NBC executives who wanted
to avoid controversy? Has anyone from HHS or NIH asked networks not to cover it?
I did find an interview from 2010 on NBC with Jamie Gengel and Laura Hillenbrand, who spoke candidly about this disease.
However, now I am very glad to have read the NYT magazine story about Laura, in which her disease and symptoms are discussed quite a bit. I thank her and the
writer and the editor of the magazine for doing this.
I think this article will be helpful in our arsenal of information about ME/CFS
and about a well-known sufferer of the illness. It builds credibility with many
people to see it written about it in the NYT and to see that an author whose
books have appeared for years on the NYT best-seller list explains that she
has the disease and how it impacts on her.
I agree that we have to aim our fire at the governmental institutions that
are obstructing funding and research here. We all agree on that.
We have to listen to each other. I asked and got an answer.
I have no expectations of Laura that she be a major spokesperson or
do major media presentations on the disease. No. And she can’t as
she’s stuck at home because of it.
Nor do I expect the attorneys in our midst to file lawsuits for us,
although I’d sign my name to a class action suit in a minute, and
hope that a healthy lawyer/advocate comes along who wants to do that.
It seems to me Laura’s explanation of the story being about Zamperini and the movie and not ME/CFS makes perfect sense from an editorial standpoint. It’s not any kind of conspiracy or fear of controversy, but just that the point of the piece had nothing to do with Laura’s illness. In fact, given Zamperini’s amazing story, it seems inappropriate to me to mix it up with ME/CFS advocacy. It’s disrespectful to both people, confusing to an audience, and just doesn’t make for good journalism.
I’m not saying the two things can’t co-exist well, as in Laura’s magazine profile that obviously was more about Unbroken, but did a great job not only describing the illness, but also showing how Laura is affected by it. That last part is the exact kind of awareness we need! But let’s not forget that Unbroken the movie is an enormous achievement and success for Laura Hillenbrand, and it’s quite selfish to demand focus taken away from that, no matter how good the intentions or reasons might be. We should be the ones who can appreciate her towering accomplishments most of all, and so we should be happy to let her celebrate that without requiring any obligation to anything else.
To move in a practical direction here, how do we find out, if we can, who at NBC might be amenable to a second piece about Laura and others and ME and a bit of its history? The story carries with it strong elements of cover-up and scandal (always welcome by TV producers), including the use of Congressionally mandated funds for CFS to other, completely unrelated uses by the CDC. Laura must know some names of those who might be sympathetic at the network; can you find out, Jennie?
Billie
In my limited experience, Laura is alert to opportunities for media coverage. For example, she was contacted by NPR regarding a story on chronic pain. She referred the producer to me, and I referred the producer to several other patients. I wasn’t contacted again after the screening interview (I guess I didn’t fit the profile) and the patients I had suggested were too sick to be interviewed within the very short timeline for the piece. So ME/CFS didn’t make the final story, but it wasn’t for lack of effort on the part of four patients! All this is to say that Laura does what she can. If she sees an opportunity to pursue such a story with someone at NBC, I believe she would do so if she could.
In response to the above question, I found online a short video clip done in 2010 on NBC about Laura Hillenbrand and her illness, covered in a sympathetic way by Jamie Gengel.
I haven’t seen Gengel on that network in a long time, so don’t know if she
works for NBC.
I would hope that the people on these government committees and those at
NIH and HHS have read the article about Laura in the Sunday NYT magazine.
That would be good as a start.
We can add it to our arsenal of information.
But are these committees and departments even open to any of
what is being said? That’s the question.
Observations: The first advertisement (regional? national?) during the Brokaw interview was a commercial for the Prevnar 13 vaccine (manufactured by Wyeth Pharmaceuticals Inc. Marketed by Pfizer Inc.) – “…Common side effects were pain… fatigue, headache, muscle or joint pain…”
Compare those symptoms to Brokaw’s description of Hillenbrand’s “debilitating condition” – “difficult situation” – “constant vertigo and exhaustion”.
Also: [Begin Brokaw] “After Louie read a New Yorker article by Laura about her severe illness, he made an extraordinary personal gesture”… [End Brokaw]
[Begin Hillenbrand] “…He mailed me his Purple Heart, and he wrote on it, ‘I think you deserve this more than I do’…”
Next, Jolies’ health experiences were mentioned: [Brokaw again] “…the radical preventative surgery she had last year after being diagnosed with a gene mutation that put her at high risk for breast cancer… After an agonizing choice, she had both breasts removed and underwent reconstructive surgery. Then she revealed her decision in a New York Times Op Ed and became an inspiration to women all over the world. What become known in the media as the Angelina Affect soon followed…” [And me paraphrasing – ] Now Jolie faces risk of ovarian cancer and another preventative surgery…
Then Brokaw notes his own experience with cancer, and he says how Jolie is very brave, and it’s wonderful that she shares and educates people about cancer, and Jolie says that she and he are lucky to have great healthcare…
Brokaw continues that Jolie has focused on the Third World and on human suffering and problems faced by veterans… and then there are comments from veterans who’ve attended a special screening of the film, etc. [End interview description.]
So in the (edited) video, Brokaw said very little about Hillenbrand’s “condition,” but he did spend a good bit discussing Jolie’s health history and how she affects others.
Brokaw mentioned Hillenbrand’s New Yorker piece, but the focus is really Louie’s personal response (which was beyond words beautiful!!) to the article. With Jolie’s article, Brokaw kind of described Jolie as an international hero bc of it. He mentioned the world, and how Jolie reached women both in and outside of the U.S., etc.
So, I have to conclude that NBC (an editor? Brokaw?) slighted Hillenbrand and ME/CFS. Considering the health info they included with Jolie, and Brokaw briefly sharing some of his own feelings about cancer – if NBC created this context of health and caring, concern and sharing, then NBC could have easily included *a very short* simple but dignified and informative line about ME/CFS. Does the absence of this seem kind of passive aggressive? Anyway…
[Brokaw to Jolie] “Given my own experience, those who don’t have cancer, they’re sympathetic. Those who have cancer are empathetic. No one knows what it’s like until you get it. What you do is so brave, and it raises the aware level.”
https://archive.org/details/KNTV_20141210_060000_NBC_News_Special_Angelina_Jolie_Unbroken#start/3240/end/3300
I have worked with the media a lot in my career. They cut and edit as they see fit. We the person being interviewed have no control of the end product. I just had a newspaper interview about ME/CFS last week. No matter how many times I said about 17 million in the world with our illness, two different reporters changed the story to quote my illness as being RARE. The TV reporters refused to read the little piece on my illness before video recording me. SO I stood there and said, READ IT NOW PLEASE. I will not start the interview until you understand in advance where I want this interview to go… But I have experience with them and at the level she is dealing with, she really has not control.
The other problem I see with our illness is that is breeds a victim mentality. Sometimes the brain fog we get causes some really bad personality changes in people with ME/CFS. And respecting healthy boundaries gets lost and crosses over to highly dysfunctional behavior… She owes us NOTHING… I believe she is separating from her life long love, so her plate is full. It is funny how we who are advocates get critizied by those laying on the counch doing nothing but being professional “post”-ers on the internet. I have learned to ignore then and we each do what we are best at…
From an advocate, patient, and author perspective, I cannot thank you enough Jennie for supporting the efforts of Laura Hildebrand. Unlike Morgan Freeman, who is reported to have fibromyalgia, she has never coward to her illness. She does speak up.
Any of us who have prepared for an interview or presentation, any of us who have dealt with publishers knows how the editing process works. There are word counts, time snips, and developing a hook, such as the brilliant title of your blog. Sometimes, we have to argue fervently, prove our point to get one sentence in. When our Integrative Therapies book went through the press release, I was bombarded with hurtful comments because the title had the Mind-Body Connection in it (the publishers title, not mine). I was banished and plummeted by social media stating I was another trying to prove FM, ME/CFS, and MPS was all in our heads. Had any one of them taken the time to read the synopsis, the inside-the-book feature that has a detailed table of contents, they would have known this was simply not true.
I have never thought Laura Hildebrand was anything other than a brilliant author who also suffers with an illness that is misunderstood by so many. There is a reason I have always known she has ME/CFS, because she has been outspoken about it. That said, we all need to remember that we are more than our illness. I grew thick skin by learning to accept my energy is wasted on people who don’t want to learn, those who would rather attack than attract. Now, it still hurts, but mostly rolls away like a receding ocean wave, and my thoughts go immediately to how I can use the adversaries energy in a positive way. That energy is better spent on the MANY who do take this walk with me. These are the people I listen too, these are the people from whom I take constructive criticism so I can make changes in a presentation that is easier to understand. While I don’t know Laura personally, I have no doubt she has also learned this lesson. There is simply no control over people who are not willing to be part of raising awareness and believe me, those are not the people we want advocating for us. She is wise to accept that as it is.
Thank you so much for this blog. You may not realize it, but in supporting Laura Hildebrand, you have supported the work of many advocates by not criticizing how they go about it. At least we do…
It is when I dare to meet hardship with courage and tenacity that I receive the gift of hope.
I give kudos to Laura H. for explaining to NBC about her illness, naming it and elaborating on it, as she wanted it to be explained.
And kudos to her for laying it out to the New York Times reporter who interviewed her for the magazine and then wrote a story sympathetic to her and to those of us with the disease she has.
And I’m glad the Times covered her story, including her disease. And I’m glad
David Tuller’s article about the Stanford study was in the Nov. 25 Times Science section.
I wish everyone a better new year in hopes that the government wakes up and smells the coffee and acts accordingly.
Here is an excellent interview on CBS’ Face the Nation on Dec. 28, where she
is able to explain ME/CFS along with her book’s history. The interviewer was
very sympathetic to her.
My new GP never heard of face blindness so I used Brad Pitt’s name to validate it. This month I’ll use Angelina Jolie’s name to validate ME/CFS through Unbroken.
Thank you to Laura Hillenbrand for speaking up about ME/CFS in the NYTimes article, Face the Nation, and the Fox News Sunday videos. It was really great awareness information. Her faculties seem more or less intact, and I’m just glad she had the health and will to do the interviews.
Wishing everyone more wellness in the new year.