Medicalization of Fibromyalgia
Feb 08, 2009 23:22 Filed in: Work
As many of you know, I work with Fred Wolfe in
running the National Data Bank for Rheumatic
Diseases (we go by NDB and not NDBRD). He
appeared in the AP news today in this story about
Fibromyalgia (FMS).
While it does cover a few of the issues of the problem, it’s weird that there’s only two quotes from Fred, yet says “"I think the purpose of most pharmaceutical company efforts is to do a little disease-mongering and to have people use their drugs," said Dr. Frederick Wolfe, who was lead author of the guidelines defining fibromyalgia in 1990 but has since become one of its leading skeptics.” He wrote a wonderful chapter about FMS in Kelley’s book of Rheumatology that came out last year that covers the topic in greater detail. Plus we’re working with the top FMS doctors in the country in devising a new and updated criteria for diagnosing FMS. Not sure what the AP means by “leading skeptics” and I’m concerned that this will hurt the NDB in our patient participation as FMS patients have zero tolerance for anything that may make them think they aren’t being taken seriously (which is far from the truth - if anything, we’ve done a lot more FMS outcomes research than anyone at UNMC wants us to).
It’s a thorny issue. The pain and problems faced by these patients is real, but the recognition of FMS as a disease by the FDA & ACR hasn’t led to the solution of the problem, but rather to a lot of drugs first approved for other less common problems and then major marketing of them in FMS. There’s the very real concern that the number of patients diagnosed with FMS will increase dramatically after this push by Pharma just like the number increased dramatically after FMS was first named in the 80s (this isn’t coming from Fred, just my own thoughts). Fred was invited to speak at a FMS conference recently, but was uninvited when he said he wanted to talk about medicalization & disease mongering (a talk that he gave to a packed house at UBC in Vancouver last fall - you have less pharma money for such things outside the US).
A fellow rheumatologist and noted opinion-writer, Nortin Hadler, was also quoted in the above AP article. He makes some good points in general, but is often considered to be on the further end of the spectrum on these debates (always interesting, though - his books are thought provoking). Here’s one of his articles now sponsored by abc on heart disease.
While it does cover a few of the issues of the problem, it’s weird that there’s only two quotes from Fred, yet says “"I think the purpose of most pharmaceutical company efforts is to do a little disease-mongering and to have people use their drugs," said Dr. Frederick Wolfe, who was lead author of the guidelines defining fibromyalgia in 1990 but has since become one of its leading skeptics.” He wrote a wonderful chapter about FMS in Kelley’s book of Rheumatology that came out last year that covers the topic in greater detail. Plus we’re working with the top FMS doctors in the country in devising a new and updated criteria for diagnosing FMS. Not sure what the AP means by “leading skeptics” and I’m concerned that this will hurt the NDB in our patient participation as FMS patients have zero tolerance for anything that may make them think they aren’t being taken seriously (which is far from the truth - if anything, we’ve done a lot more FMS outcomes research than anyone at UNMC wants us to).
It’s a thorny issue. The pain and problems faced by these patients is real, but the recognition of FMS as a disease by the FDA & ACR hasn’t led to the solution of the problem, but rather to a lot of drugs first approved for other less common problems and then major marketing of them in FMS. There’s the very real concern that the number of patients diagnosed with FMS will increase dramatically after this push by Pharma just like the number increased dramatically after FMS was first named in the 80s (this isn’t coming from Fred, just my own thoughts). Fred was invited to speak at a FMS conference recently, but was uninvited when he said he wanted to talk about medicalization & disease mongering (a talk that he gave to a packed house at UBC in Vancouver last fall - you have less pharma money for such things outside the US).
A fellow rheumatologist and noted opinion-writer, Nortin Hadler, was also quoted in the above AP article. He makes some good points in general, but is often considered to be on the further end of the spectrum on these debates (always interesting, though - his books are thought provoking). Here’s one of his articles now sponsored by abc on heart disease.
|
To salvage the blog links or not
Feb 06, 2009 22:23 Filed in: Observations,
Tech, Humor
Some are very out of date, but here’s a few gems that
tickled my fancy from the past few months. I wouldn’t
have taken the effort to put them here if I didn’t
think you’d find something to appreciate. Enjoy!
Science/Technology:
Physics the Next President Needs to Know | Wired Science
Stop Government Interference With Science : NPR
Richard Feynman on Boltzmann Brains | Cosmic Variance | Discover Magazine
Scientists discover new forest with undiscovered species on Google Earth - Telegraph
BBC NEWS | Science & Environment | Drillers break into magma chamber - VERY impressive, reminds me of journey to the center of the earth. Any “Vernians” among us?
Baby born during trans-Atlantic flight to Boston - Yahoo! News
The Evidence Gap - A Big Hypertension Study, and Its Minimal Impact - NYTimes.com - A link for something related to my work, even!
Concrete casts new light in dull rooms - optics.org - Transparent concrete!
Keys Can be Copied From Afar, Jacobs School Computer Scientists Show
The Top 10 Architectural Wonders of Dubai | StyleCrave - I’ll be there next month!
YouTube - Hans Rosling: No more boring data: TEDTalks - Wonderful short talk by an ex-Swedish stat professor using technology for a new Google startup, Gapminder.org - For a fact based world view.
Sex:
Bollywood Sex Symbols: Thirty Sexiest Actresses | Gunaxin - OK, no good reason to post this, but after Prea got me hooked on some Bollywood movies, it’s hard not to notice. Guess there’s an advantage to having near a billion people - lots of folks on the edge of the bell curves in talent, brains & looks! (even with such poor infrastructure)
Is Having Sex with a Robot Hooker Cheating? Revisited - Asylum - Amusing short debate.
Books: Ten of the Kinkiest Science Fiction Books You'll Ever Read - I’ve actually read a couple of these (& agree) and had a couple more recommended.
Texas Pastor’s Advice for Better Marriage - More Sex, More Often - NYTimes.com
TV/Movies/Muppets/Games:
ROTTEN TOMATOES: 10th Annual Golden Tomatoes - I’m hosting another Oscars party this year. It’s a shame there weren’t more of the movies from RT in the Oscars. Mainly disappointed The Dark Knight didn’t get more nominations - what a great movie! So guess I’ll be cheering on Slumdog Millionnaire (& Wall-E as I’m still in disbelief that Kung Fu Panda won all the Annie awards!)
Topless Robot - The 10 Most Disturbing Puppets Ever Shown on TV - Sadly, I’ve seen most of these and agree. If they ever showed Meet the Feebles, that would be numero uno!
The Screens Issue - If You Liked This, Sure to Love That - Winning the Netflix Prize - NYTimes.com - Was just discussing this with statistics faculty today at lunch. Here’s a nice radio interview about it from On the Media.
Topless Robot - The 10 Greatest Zombie Films of All Time (with Evidence)
The Muppets take over TODAY - allDAY - msnbc.com - Cute clips, but seems like a long FAO Schwarz muppet advert.
Topless Robot - The 8 Most Underrated Muppets - again, more memory lane muppet joy!
THIS WOULD’VE BEEN A BETTER COMMERCIAL | FilmDrunk - If you’ve EVER played Guitar Hero or Rock Band, you need to watch this home made video. Outstanding!
Topless Robot - This Is Why You Don't Wear Red - Remember when we’d see someone on Star Trek wear the red uniform? Crazy compilation worth see if only for the cultural reference.
Topless Robot - EGM, R.I.P. - This was THE games magazine to read for the 90s & even beyond (I know Josh was shocked when I showed him this). Farewell!
Politics/(Not so) Current Events:
Neb. parents rush to leave kids before law changes - Yahoo! News - Something I imagine many of you heard about back in November.
Why Justice Lawyers Defied President Bush | Newsweek National News
Bush's Final F.U. : Rolling Stone
Assessing the Bush years | The frat boy ships out | The Economist - I see a theme here.
Report: U.S. Power Will Fade By 2025, National Intelligence Council Predicts
FiveThirtyEight.com: Electoral Projections Done Right: What In The Hell Happened in Alaska? - The BEST site to watch before the elections. Had lots of good articles on possible shenanigans happening in a few states (like Nebraska, Minnesota & Alaska).
ACLU: 2/3 of US population lives in "Constitution-free" zone - another reason to live in the midwest!
Humor/For-kicks/Sports:
Winston finally had to concede he might « Lolcats - reminds me of TB, but a whole lot funnier!
xkcd - A Webcomic - I'm An Idiot - I showed lolcat & xkcd pics in some of my rheumatology seminars. Very few laughed - another sign that I’m out of touch? One of the doctors thought I had made them up myself.
The Mystery of the Yellow Line Video - all about the Yellow Line used in American football coverage. I learned a lot and was surprised as to how much tech goes into it! Now, if only they could get rid of those stupid chains (I know, blasphemy!)
New Year, No Limits: Maddison Motorcyle Jump - ESPN Video - Insane NYE jump!
Play Auditorium - Addictive, pretty & musical browser puzzle game.
Design*Sponge » Blog Archive » design guide: omaha, nebraska - Special blog of places to visit in Omaha!
Crystal Head Vodka - So hard to express how I feel after watching Dan Akroyd advertise this new vodka. Feel free to send me a bottle!
moosebutter - Hilarious & talented a cappella group that did the best mash up of John Williams tunes in a Star Wars compilation. Unfortunately the video is now off of youtube, but still worth listening to.
Science/Technology:
Physics the Next President Needs to Know | Wired Science
Stop Government Interference With Science : NPR
Richard Feynman on Boltzmann Brains | Cosmic Variance | Discover Magazine
Scientists discover new forest with undiscovered species on Google Earth - Telegraph
BBC NEWS | Science & Environment | Drillers break into magma chamber - VERY impressive, reminds me of journey to the center of the earth. Any “Vernians” among us?
Baby born during trans-Atlantic flight to Boston - Yahoo! News
The Evidence Gap - A Big Hypertension Study, and Its Minimal Impact - NYTimes.com - A link for something related to my work, even!
Concrete casts new light in dull rooms - optics.org - Transparent concrete!
Keys Can be Copied From Afar, Jacobs School Computer Scientists Show
The Top 10 Architectural Wonders of Dubai | StyleCrave - I’ll be there next month!
YouTube - Hans Rosling: No more boring data: TEDTalks - Wonderful short talk by an ex-Swedish stat professor using technology for a new Google startup, Gapminder.org - For a fact based world view.
Sex:
Bollywood Sex Symbols: Thirty Sexiest Actresses | Gunaxin - OK, no good reason to post this, but after Prea got me hooked on some Bollywood movies, it’s hard not to notice. Guess there’s an advantage to having near a billion people - lots of folks on the edge of the bell curves in talent, brains & looks! (even with such poor infrastructure)
Is Having Sex with a Robot Hooker Cheating? Revisited - Asylum - Amusing short debate.
Books: Ten of the Kinkiest Science Fiction Books You'll Ever Read - I’ve actually read a couple of these (& agree) and had a couple more recommended.
Texas Pastor’s Advice for Better Marriage - More Sex, More Often - NYTimes.com
TV/Movies/Muppets/Games:
ROTTEN TOMATOES: 10th Annual Golden Tomatoes - I’m hosting another Oscars party this year. It’s a shame there weren’t more of the movies from RT in the Oscars. Mainly disappointed The Dark Knight didn’t get more nominations - what a great movie! So guess I’ll be cheering on Slumdog Millionnaire (& Wall-E as I’m still in disbelief that Kung Fu Panda won all the Annie awards!)
Topless Robot - The 10 Most Disturbing Puppets Ever Shown on TV - Sadly, I’ve seen most of these and agree. If they ever showed Meet the Feebles, that would be numero uno!
The Screens Issue - If You Liked This, Sure to Love That - Winning the Netflix Prize - NYTimes.com - Was just discussing this with statistics faculty today at lunch. Here’s a nice radio interview about it from On the Media.
Topless Robot - The 10 Greatest Zombie Films of All Time (with Evidence)
The Muppets take over TODAY - allDAY - msnbc.com - Cute clips, but seems like a long FAO Schwarz muppet advert.
Topless Robot - The 8 Most Underrated Muppets - again, more memory lane muppet joy!
THIS WOULD’VE BEEN A BETTER COMMERCIAL | FilmDrunk - If you’ve EVER played Guitar Hero or Rock Band, you need to watch this home made video. Outstanding!
Topless Robot - This Is Why You Don't Wear Red - Remember when we’d see someone on Star Trek wear the red uniform? Crazy compilation worth see if only for the cultural reference.
Topless Robot - EGM, R.I.P. - This was THE games magazine to read for the 90s & even beyond (I know Josh was shocked when I showed him this). Farewell!
Politics/(Not so) Current Events:
Neb. parents rush to leave kids before law changes - Yahoo! News - Something I imagine many of you heard about back in November.
Why Justice Lawyers Defied President Bush | Newsweek National News
Bush's Final F.U. : Rolling Stone
Assessing the Bush years | The frat boy ships out | The Economist - I see a theme here.
Report: U.S. Power Will Fade By 2025, National Intelligence Council Predicts
FiveThirtyEight.com: Electoral Projections Done Right: What In The Hell Happened in Alaska? - The BEST site to watch before the elections. Had lots of good articles on possible shenanigans happening in a few states (like Nebraska, Minnesota & Alaska).
ACLU: 2/3 of US population lives in "Constitution-free" zone - another reason to live in the midwest!
Humor/For-kicks/Sports:
Winston finally had to concede he might « Lolcats - reminds me of TB, but a whole lot funnier!
xkcd - A Webcomic - I'm An Idiot - I showed lolcat & xkcd pics in some of my rheumatology seminars. Very few laughed - another sign that I’m out of touch? One of the doctors thought I had made them up myself.
The Mystery of the Yellow Line Video - all about the Yellow Line used in American football coverage. I learned a lot and was surprised as to how much tech goes into it! Now, if only they could get rid of those stupid chains (I know, blasphemy!)
New Year, No Limits: Maddison Motorcyle Jump - ESPN Video - Insane NYE jump!
Play Auditorium - Addictive, pretty & musical browser puzzle game.
Design*Sponge » Blog Archive » design guide: omaha, nebraska - Special blog of places to visit in Omaha!
Crystal Head Vodka - So hard to express how I feel after watching Dan Akroyd advertise this new vodka. Feel free to send me a bottle!
moosebutter - Hilarious & talented a cappella group that did the best mash up of John Williams tunes in a Star Wars compilation. Unfortunately the video is now off of youtube, but still worth listening to.