We Stand with Tina
Steve Newton over at Outside the Machine asked all Delaware bloggers for help, and I am happy to oblige. A general lack of empathy exists in our society (generally more so on side of the aisle, but I digress), and there are times when those with empathy have to slap unsympathetic assholes back.
Yesterday the Wall Street Journal published another article on Chronic Fatigue Syndrome (cached, ungated version here; hit “Join the Discussion” not “Comments” to read the comments). Many of you know that my son Michael suffers from this disease. I have worked with the author of this article at the WSJ before, and I am sad to say that no good deed goes unpunished.
Why? Because the author asked me to help her contact another family with a child suffering from CFS, and I did. Tina Gustavsson is a fifteen-year-old who lives about two miles across the DE/PA border. She has a much worse case of CFS than Michael, and has had unending struggles with the Kennett Square School District to get fair treatment. The Gustavssons belong to a small, informal group of CFS suffering children/families that has been organized for mutual support in PA/DE/NY/MD.
Unfortunately, not only did Amy Marcus write the article so that Tina could be viewed as a lazy teenager whose family was trying to bilk an entirely reasonable school district, but the whacko commenters came out in force. I won’t quote them because I am not willing to give them the space.
I’m OK with the people who realize CFS is a disease, and want to discuss the extent to which our society should pay out of the public purse to educate/treat the victims.
I can even deal with the ideologues (including, sadly, some physicians) who think the disease is fictitious despite literally thousands of articles now extant dealing with the physiological symptoms.
What I cannot abide (and I am going to use a technical term here) is the ASSHOLES who chose instead to comment at the WSJ attacking Tina as a lazy teenager who just needs a kick in the butt, or her family as societal leeches who are trying to game the system. If you go through and read the comments, some of them even got down to being snide about the fact that she didn’t look sick in the photo that the WSJ published, and that’s how they knew it was all a scam.
I was very proud of Tina’s big sister Natalie for heading right into the comment section and defending her sister tooth and claw, although all of us in blogdom could have told her that it was pretty pointless by the time a feeding frenzy of idiots gets started.
The Gutavssons have, simply, been raped as a family by the WSJ and its commenters, and I’d like to let them know that there are people in the area who just don’t think that’s right.
So here’s what I’m asking of all of you–jason, Hube, von cracker, anonone, everyone who stops by…
1. Publish a post on your blog that essentially says, “We stand with Tina”–that 15 year-old girls with disabilities shouldn’t be fair game for the crazies (or just link to this post if you’d like).
2. Take the time to visit the WSJ and read through the comments (they get really REALLY vile around page 7) and leave a reaction.
Maybe I’m not the best person to be asking this of everyone, but there has to be a line somewhere, and attacking sick children who live in our own backyard has to be over that line.
PS–Michael is doing well this year, for those of you who have followed his progress. We’re trying some new palliative therapies. Oh, and for those idiots who think this is a large-scale scam, there are only four diagnosed cases of Adolescent Chronic Fatigue in Delaware, and less than 100 in PA.
Because the noise machine functiuon so smoothly, once the right wing gets a target they are pretty relentless. I would not be surprised to see the story, as presented by the WSJ, taken up by commenters at Fox News and the usual wingnut radio idiots like Rick Jensen.
As the husband of a chronic fatigue sufferer, I stand with Tina (as well as Steve and Michael).
The moral of the story is that the WSJ has no morals. Oh, and that newspaper comments sections are largely inhabited by assholes.
Thanks, guys.
By the way, I should have an editorial response published to the WSJ in the News Journal this weekend. What’s the point of being with the Community Advisory Board if you can’t use it for something real?
not only did Amy Marcus write the article so that Tina could be viewed as a lazy teenager whose family was trying to bilk an entirely reasonable school district
OK, I just read the article, and I don’t see what Steve and everyone else is seeing. The story is very balanced, showing the tensions and back-and-forth between the family and the school district, and the frustrations on both sides. It’s not judgmental in any way about her illness, nor about her family’s desires for her education. If she was too weak to read, that’s a fact. There’s no suggestion anywhere in the story that this is a hoax or that she was just being lazy.
I think you’re being a bit too sensitive. Separate the insane comments from the reporter’s work. They’re not one and the same.
I would also point out that any perceived negative information in the story came from *her family.* The school district only commented in general terms, and would not discuss her specific case. So all the details about missed classes, makeups, scheduling, etc., had to have come from the parents.
Anon,
Notice first that the article refers to “so-called hidden disabilities” and then states that CFS is only diagnosed by self-reporting. The first is loaded; the second is simply factually and medically wrong.
Then Ms Marcus juxtaposes the CFS case with the case of a kid with bipolar disorder, ADHD, and anxiety, telling the story of the school driven to take him to a hearing because while the parents were demanding at-home tutoring the child was riding his bike and playing basketball.
Now look at the coverage of Tina’s condition: it says she was diagnosed. It does not mention that she was an athlete before she was diagnosed, that she was diagnosed based on clinical tests at places like Johns Hopkins. It says she had trouble getting up in the morning; it doesn’t say (even though I can tell you definitively that Ms Marcus was told this) that she was suffering from near-continuous migraines, or severe, intractable joint pain, or had orthostatic intolerance so severe that she had a risk of fainting if she stood for more than 10 minutes.
Because it didn’t say any of these things, Tina came off looking like the kid at home playing basketball while his parents demanded special services. Read the comments. Did you bother?
The school district provided a great deal of information but only one direct quote. I was in the room when the subject was discussed; the quote provided by a school district employee was, charitably, not accurate.
Nothing in the article discussed–as we had been told when Ms Marcus was gathering her material–the many cheap and sleazy tricks school districts play on these kids. A NY district refused to start the at-home tutoring–despite a state finding for the family–for nearly four months, and then attempted to withdraw the student from all of her courses for non-attendance. A school district in PA refused to use fully-qualified tutors who could meet students during the day at their times of best function because the special education coordinator would only funnel the extra pay to teachers in her building. Another school district in NY demanded that an academically high performing CFS student on track to a Regents diploma be pulled out of science class twice a week to attend “Resource Room” where special needs students with profound mental disabilities were being taught to recognize their own social security numbers and work in sheltered workshops.
She didn’t cover the fact that CFS students are Special Education under the “other health impaired” provisions of IDEA, and therefore don’t fit the mold that our Special Education professionals are using to servicing.
I’m sensitive, huh? You’re damn right, and you have no idea what you are talking about.
This WSJ piece is already being cited on bulletin boards around the country for school administrators to use as ammunition to resist, refuse, or reduce services.
I am repeating here a comment I left at Steve’s blog as well:
Please do not assume that the decisions about what to include and exclude from Amy Marcus’ article were made by Ms. Marcus herself. Many such decisions are dictated by editors, who may choose to highlight issues the reporter would not. This is especially possible at the WSJ, where many reporters and former reporters have complained about such editing since the Murdoch takeover. Given the newspaper’s generally conservative readership, the editors might have decided that the issue of who pays would resonate better with their audience more than the human-interest story of trying to educate such children. A human-centered story like that might not fit with the editors’ agenda.
Of course, it’s possible Ms. Marcus chose the slant herself, the better to curry favor with editors. But given your previous, apparently cordial history with her, I suspect editor interference.
So you’re whining that the reporter didn’t include everything you wanted her to write? Grow a pair, professor.
If testicles prevent whining, please explain the Tea Party.
Some more responses:
* The phrase “so-called hidden disabilities” that you cite as a slam is actually a term widely used by medical professionals and researchers to describe a wide range of hard-to-diagnose conditions. Google it and you’ll see. It’s not a derogatory term in the least.
* A CFS diagnosis, according to the National Institutes of Health, must be based on at least four symptoms. Only three of the symptoms identified by the NIH (mild fever, muscle weakness and sore lymph nodes) can really be assessed by a professional. That means every CFS diagnosis must rely on at least one of the self-reported symptoms. So yes, it *is* a self-reported condition.
But stating that fact does not in any way suggest, as you seem to think it does, that people who suffer CFS are faking it. (Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002224)
* You state: “Then Ms Marcus juxtaposes the CFS case with the case of a kid with bipolar disorder, ADHD, and anxiety … riding his bike and playing basketball.” No, she didn’t juxtapose anything. She reported two separate cases. Any inference was on the part of the reader.
* The bulk of your critique is based upon information not contained in the article: “It does not mention … it doesn’t say … it didn’t say any of these things … Nothing in the article discussed … She didn’t cover the fact …” If you wanted an article to say exactly what you want it to say, then write it yourself. I’m glad you’re doing that. But the reporter gave this girl and her family a ton of ink, bending over backwards to explain a condition that even physicians don’t understand. Just because she didn’t choose to report every last tiny detail doesn’t mean the article is slanted.
* You wrote: “Read the comments. Did you bother?” As I previously stated, you need to separate the comments of a bunch of anonymous online idiots from the work of the professional reporter who went out of her way to find, interview and tell the story of a young girl dealing with some very severe problems.
Again: Stop whining. All you’re doing is almost guaranteeing that neither you nor your little group will be interviewed by any major media outlet on this topic again. They’re going to read your unhinged rants and say “Wow. No matter what I write, these people are going to find some problem with it. No thanks.” You’re only hurting yourself.
I would like to thank Steve for all of his efforts in protecting Christina and my family. I believe what has alarmed the ME/CFS community was the real lack of explaining what ME/CFS does to our children and the difficulties of life they face daily.
My husband posted his thoughts on the website and they are below:
As Christina’s parents we feel obligated to make a few comments in response to this article.
First, let us apologize to the many children and adults who suffer from ME/CFS and were faced with the all too familiar ridicule penned in some of the previous comments. When the WSJ approached us for this article, we were lead to believe it was to focus on the challenges of HOW to educate ME/CFS children. It’s clear the WSJ intent instead was to use highly suggestive statements that exploited well known doubts among the general public regarding ME/CFS to question the entire idea of Special Education funding.
Ms. Marcus, the article author, states “Patients are diagnosed on a pattern of self-reported symptoms…,” making it sound as if any student can simply make some statements of feeling tired and immediately be diagnosed with ME/CFS. Of course, ANY diagnosis of any illness start with self-reported symptoms. She also knows that while there is no SINGLE test to diagnose ME/CFS, there are a multiple linked tests that do. Why Ms. Marcus, who has covered ME/CFS issues many times before, chose to misrepresent the facts we don’t know. Our interactions with her were open and honest. Continuously in the article she edits quotes and facts to portray a reality that never existed.
We are very grateful for the many doctors at A.I. du Pont’s Children’s Hospital, John Hopkins and NYU hospitals who have brought help and hope when we most needed it and continuously work to improve our daughter’s life. We are grateful for the many people who so eloquently described the real challenges with ME/CFS in this comment section. Every day we are amazed by the grace and courage our daughter display in the face of this terrible obstacle to her aspirations and dreams, and for our eldest daughter so supporting and protective of her sister, as she showed in some of the earlier comments. And, despite what the article tries to portray differently, we’re grateful for a school that share our goal to provide Christina an education.
Most people with CFS/ME are A-type. They are driven and want to excel; the illness is devastating to them. Believing it’s their “trick” so they can spend more time on facebook or hang at the mall is laughable, as they have no energy for such activity; and it’s insulting to who they are and what they do. For children with ME/CFS to attend school is tricky, but so what? It is tricky to figure out how to provide ANY child an education. Our daughter Christina goes to school 52 weeks a year. She gets no break because she desperately tries to hang on to her education and progress with every moment her body and mind allows her to concentrate and learn. If she is the definition of lazy, we know of few people who are not.
Should we pay, as a society, for the needs of special education kids? At least today our society believes in and legally support all children to have equal opportunity to engage in society and achieve to the best of their abilities, independent of the cards dealt them – be it financial, mental or physical limitations, or by their sex or race. It’s a belief that diversity will always produce greater benefit for everyone. The benefits of this approach are endless, but highlighted by the amazing achievements of the likes of Laura Hildebrand and Stephen Hawkins, both who would be discarded did we not have these beliefs.
School funds are not endless. But neither are the obligations of the schools to support special education – current law already limits efforts to be within reason. A debate of how funds are spent is always fair, but what is not ok is to misrepresent or mislead the facts around one group of children suffering from ME/CFS to make them an easy target.
I hope that helps with the conversation.
Michelle Gustavsson
Anon
One final comment then you can take your rather contrived defense on the road.
The NIH definition (by the way, your link doesn’t work) is out of date, and doesn’t include a wide variety of clinically testable symptoms that are used by competent physicians to diagnose the disease.
Here’s just a sampling:
A competent physician needs only a stethoscope and a blood-pressure cuff to diagnose Postural Orthostatic Tachycardia Syndrome (POTS) or Orthostatic Intolerance, both key symptoms for many CFS patients. Exercise physiologists can determine if a patient’s recovery index from physical exertion is compromised, and the patient suffers from Post-Exertional Malaise. Standard psychological tests can and do document cognitive and memory deficits. Simple lab work usually discloses blood abnormalities, and virologists often find Lymes or Herpes antibodies in the bloodstream of CFS sufferers. A recent British study isolated several hundred anomalous markers in the spinal fluid of CFS patients.
Please don’t think that with a couple of minutes of googling you can become an instant expert on this disease. Families and children with ME/CFS have been dealing with realities you can’t and apparently don’t want to understand.
Grow a pair? One of us uses his name for what he writes. One of us is interested in protecting a fifteen-year-old girl. The other one just wants to be the smartest person in the room, as if it’s an academic exercise.
@Geezer: your point would be well-taken, except: (1) I deal with media reporters a great deal, and I am well aware of the phenomenon you describe; and (2) I have dealt with this particular reporter for several months, and I have had interchanges with her before and after this story was published. I can assure you that in this case there was minimal to no interference with what the reporter intended to write.
Here’s a better link: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002224
And Steve, the NIH is *the* national resource on health issues. I’ll stick with them over listening to a non-physician, thanks very much.
Dodging the other issues I raised? They had a saying for that when I was back in the academy. What was it? Oh, yes – intellectual cowardice. When your points are deflated, declare the other party to be full of shit and run out of the room. Nicely played, sir!
I have incredible sympathy for you and other families whose children and loved ones are suffering through CFS and other difficult-to-diagnose diseases. What I find hypocritical is *your* conduct – how a university professor and respected blogger goes apeshit when a reporter doesn’t parrot your line or write exactly what you want, how you want. You know better than that.
BTW, what did the reporter say when you called her this morning to complain?
Mr. Anon
I find your own comments petty and mean spirited. Amy Marcus called me and said she was working on an article for the WSJ about the challenges these kids face trying to get an education. Instead her article brushes over the reams of information I gave her about Tina’s illness, gives the impression this is not a serious disease that ruins peoples lives and links Special Education funding with two children’s illness that aren’t related. The headline alone gave me a step back. I would have never allowed her to come to our home and talk to Tina if I felt this was not going to help other children in a similar situation. The school in the article looks very reasonable. and we appear to be asking for the world. That is not reality. She didn’t mention that I drive Tina to school on the days she is able, that I bought the computer and the audio books when she couldn’t read. That they wouldn’t provide any teacher for months because they couldn’t find one. That would be unacceptable for any other child in a classroom.
If Tina had cancer, people would understand. But they don’t understand ME/CFS. Steve is not worried about getting an interview or getting attention from our “little group”. He is worried like I am that this doesn’t help explain what is going on with our children’s bodies and our worries for the future. This also is running in a conservative paper, which furthers the idea the we should get rid of public schools. Have you not noticed the vitriol from the Tea Party? People yelling out that we should just let someone sick without insurance die? Or the man yelling at a man with Parkinsons and throwing a dollar at him. There is real trouble brewing and we must fight for those we are not able to take care of themselves.
You say the comments don’t matter, but they do. This is not just a local paper being read by a couple of kooks. This is an international paper, read by many very wealthy, smart people. This is what they are thinking, that Special Ed is a waste of money and that we are using the system. Or that she is lazy and faking it. If the article was the piece Amy implied, I would have thought some would make ridiculous, ignorant comments, but it was way over the top,
We were not expecting Amy to parrot everything we said, I could tell towards the end she was getting some pressure from her editors. But I was worried she was trying to throw the school system under the bus. Instead she threw an illness under the bus and made Tina a person of ridicule to the public.
Michelle Gustavsson
(I don’t hide behind a fake name)