New York Times Op-Ed: A Disease Doctors Refuse to See/CFS needs effective treatments, J Rehmeyer

Simon

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An Opinion Editorial in the New York Times today by writer and patient Julie Rehmeyer reflecting on the IOM report

Chronic Fatigue Syndrome Needs Effective Treatments - NYTimes.com

TOO often, doctors don’t understand chronic fatigue syndrome. They don’t know how to diagnose it, and they frequently even believe that patients with the disease are just whining or suffering from psychological problems. This needs to change.

That was the message from the Institute of Medicine’s recent report on the illness, which proposed new criteria to diagnose it and recommended ditching the syndrome’s confusing and demeaning name. The proposed alternative: systemic exertion intolerance disease, or S.E.I.D.

As a patient for 16 years, I’ve dealt with plenty of doctors who were ignorant about the disease. So my questions were: Will this work? Is a report from one of the most prestigious bodies in American medicine, an arm of the National Academy of Sciences, enough to make doctors take the disease seriously? Will patients get diagnoses faster and be treated more effectively?

Early indications are discouraging. An article about the report on Medscape, a website for doctors, received 273 comments as of Tuesday, and most were dismissive. Here are a few examples:

.... read the full article (free, but you may need to register): Chronic Fatigue Syndrome Needs Effective Treatments - NYTimes.com

I think this is a terrific and well-written piece by Julie; we are getting heard at last.
 
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Simon

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Thanks to Julie for linking from her Op-Ed to the Phoenix Rising blog I wrote (and thanks to Julie for all the writing help she's generously given me along the way).
Unfortunately, no one test can reliably distinguish patients who have chronic fatigue syndrome from those who don’t. The closest thing to a reliable, objective test is a two-day exercise-to-exhaustion challenge on a stationary bike. Sick patients of all varieties may poop out quickly on Day 1 but whatever they do, they can generally repeat it the next day. Not C.F.S. patients; their performance tanks. Physiological measures ensure that the results can’t be faked, and so far, researchers haven’t seen similar results in any other illness. But large studies haven’t been done. The test also has a big problem. It can leave patients much sicker for months.
 
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DanME

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Thank you very much for this very well written article. I think it describes our situation and the abusive behaviour of (some) doctors very convincingly.
 

eafw

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Great article. The NYT does seem to have writers who are prepared to do some proper old-fashioned journalism - ie digging into a subject for the facts, or as in this case drawing on people with real experience to give their story.

Did have a bit of a wry smile at "Doctors may be a scientifically minded lot" though.
 

meadowlark

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I'm very happy with that piece, especially its prominent place in such an influential paper. But I'm very unhappy with some of the comments. (As you'd expect, it's more "it's all in your head" stuff.) I'm not cognitively sharp enough today to respond, and if I can't respond well I think it's best to ignore it. But it sure is discouraging.
 
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Aurator

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I've read all 243 (so far) comments as well as the article. There are a few eloquent testimonials in there, such as Justin Reilly's, but also a dispiriting sprinkling of brainless prejudice.

This one particulary got my goat:

David Devonis: "If a person is employed (and writing for the NYT), then what boots if he or she is tired all the time? Lots of people in the world go through lots worse to live. US culture has no patience with the sick, and especially with those claiming to be sick without hard evidence. All the hard evidence in this case points to one conclusion: this is a person who is working, productive, and feels lousy. No diagnosis is necessary for such a ubiquitous condition. If we are really looking for the roots of this syndrome, we have to look at psychological issues--especially why people differ in their ability to 'play through pain.' Athletes would be a good population to study in this regard."

Clearly the writer has never met a former athlete suffering from ME/CFS; there are plenty out there, including myself. Every time an ME-denier pops up, you meet with this same simple-minded belief that patients are just not trying hard enough, that we're all softies with a poor work ethic, a low pain-threshold, and a limited concept of what constitutes hard physical effort.

As a schoolboy I played county-level Rugby Union. As an adult I was a committed amateur track athlete, specialising in long distance events. I had a resting pulse of 42 beats per minute and a respiration rate of 3-4 per minute. As a rugby player and athlete I "played through pain" all the time. But except when I broke bones playing rugby the adrenalin-fuelled exhiliration of competition meant that it wasn't pain in the ordinary sense anyway; it was an acceptable part of the bargain you made for wanting the rewards of competition.

I don't know how many times I've told sceptics (including other athletes) that the pain threshold you have to have and the self-discipline and mental toughness you have to summon up every day when you have ME/CFS make an athlete's training and racing regime look like child's play. The only consolation I have when I read tripe such as this by David Devonis is that the true situation is actually the reverse of what he thinks is the case: people with ME are the ones with the highest ability to "play through pain", not the athletes; except that in the case of people with ME it isn't a game, it's a war, and it's a war they're left to fight almost entirely on their own.
 

MeSci

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Generally good article, but I would take issue with
A more practical test for exertion intolerance may come from examining the gene expression in the spinal fluid of C.F.S. patients after moderate exercise, which has been shown to be distinctively abnormal in small samples.
It would take a potentially life-threatening situation to persuade me to undergo a lumbar puncture, and it should NEVER be required of patients to get state benefits or other help. If a lumbar puncture goes wrong - and they do - it can be catastrophic. Even when it doesn't, the after-effects can be very nasty.

Personally I'd rather take my chances with a maximal exercise test.
 

OverTheHills

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As a schoolboy I played county-level Rugby Union. As an adult I was a committed amateur track athlete, specialising in long distance events. I had a resting pulse of 42 beats per minute and a respiration rate of 3-4 per minute. As a rugby player and athlete I "played through pain" all the time. But except when I broke bones playing rugby the adrenalin-fuelled exhiliration of competition meant that it wasn't pain in the ordinary sense anyway; it was an acceptable part of the bargain you made for wanting the rewards of competition.

I don't know how many times I've told sceptics (including other athletes) that the pain threshold you have to have and the self-discipline and mental toughness you have to summon up every day when you have ME/CFS make an athlete's training and racing regime look like child's play. The only consolation I have when I read tripe such as this by David Devonis is that the true situation is actually the reverse of what he thinks is the case: people with ME are the ones with the highest ability to "play through pain", not the athletes; except that in the case of people with ME it isn't a game, it's a war, and it's a war they're left to fight almost entirely on their own.
Eloquent. I hope you have posted this as a comment in the NYT.
 

Dolphin

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A more practical test for exertion intolerance may come from examining the gene expression in the spinal fluid of C.F.S. patients after moderate exercise, which has been shown to be distinctively abnormal in small samples.
What does this refer to?