Chronic Monday: Be Well, Not Medicalized for FM...?
Sequel to this post here.
There's a blog post about FM on Revolution Health (copy and link at the end of this post) that has had me in a tizzy ever since I first saw it on 9/10. I originally found out about this blog post on Dominie Bush's 9/10/07 newsletter. (Thanks again, Dom, for the great job you do and have done for many years in bringing us excellent and timely info about what's going on with FM & CFS.) This is what Dominie's newsletter blurb said:
After reading this, I went to the doctor's blog post and read the real thing. My first reaction was: I got angry.
I kind of lost it. I submitted a comment that wasn't very professional. To say the least:
The blog author, Dr. Joseph Scherger, is a professor of clinical family and preventive medicine at the University of California, San Diego School of Medicine (can't help but wonder if this article is the best preventive medicine advice he can come up with) and he is a member of Revolution Health's medical expert team; he is their Men's Health Expert. My own research tells me he also practices family medicine in Del Mar, CA and has been in the business for 32 years.
Dr. Scherger must have fixed (most of) the grammatical errors in the blog post that I mentioned in my comment above. (Drat! - and I didn't get a copy beforehand.) He responded to my comment promptly (I added the bold text):
WEEEEEELLLLLL. This response made me more angry. But now the anger was more the slow burning, I-don't-get-mad, I-get-even type.
His comment about personal insults did help me, though. I really don't want to be that type of writer or speaker. I want to be the voice of reason. (And carry a big stick.)
I've never found where Revolution Health said that Dr. Scherger did not "believe in" FM. Perhaps they changed that, I don't know.
Tell me true, dear readers, after you read the offending post (sorry, just couldn't bring myself to put it at the beginning of my post), does he sound humbled by the mystery of this condition, or like he realizes that our knowledge of it is very limited?
I decided not to respond to Dr. Scherger's question posed in his response, about why women of a certain age are the predominant group diagnosed with FM. How should I know??? And I don't care to speculate. But I did come across a speculation as to the answer to this question, by a well qualified doctor in an ImmuneSupport article. I added this comment to Dr. Scherger's post on 9/27:
I've posted a lot of other accurate information about FM in the comments section of Dr. S's blog post. That comments section has run on to nine pages now. I think the pages are difficult to navigate, and it's also difficult to post anything but straight text. I've put all of the comments from this site here, for easy viewing. I'll keep it updated until I'm no longer interested in doing so or until Dr. S's post is taken down, whichever comes first.
This is a copy of the email I sent to Revolution Health's Customer Care department on 9/11:
This is the response I received from them on 9/14:
Re: the section of RH's response that says "the blog postings from other Revolution Health Users and Doctors are all personal opinions in which may or may not be based on their personal experiences and medical knowledge": But wouldn't you expect that a doctor whose blog is sponsored by RH in the sense that they have made him their Men's Health Expert, would be accurate AND based on his medical knowledge? And what about that Men's Health Expert thing - why's he writing about what is, so far as we currently know, a predominantly women's problem anyway?
After reading RH's Guidelines, I noted that: I obviously do find Dr. Scherger's post offensive; and I feel it violates the guideline that says don't "express negative opinions without supporting facts." I'm going to write and tell them so, but the more people who support this view, the more effective the protest will be. Hence one purpose of this post. Have I convinced anyone new?
A little info about RH:
A better way indeed. I was a member of another online health organization that was bought out by RH. That's how I came to my membership with them. But a couple of other organizations of which I'm a proud member are also affiliated with RH: National Alliance for Mental Illness and the National Sleep Foundation.
This post has run long but I'm not through with the subject, not by a long shot. There's much more material from Dr. S in the comments section to his post. But I'm wondering if I'm obsessing over this and if I should maybe just get over it (to use Dr. S's words). I'd also like to know what other people think who also have a vested interest in FM and what's said about it. To that end, this week I will be asking others whose opinions I have come to respect what they think about this topic, by promoting this post. In the interest of fairness I'll also post a link to this blog post on Dr. S's blog post comments. I think I could let it go a lot sooner if the offending post were to be removed from the Revolution Health site.
In my cursory research of Dr. Scherger's background, I have not found anything else incriminating or that I would even disagree with. In case anyone else is interested in looking into this further, here are the links I've come up with so far:
UCSD SCHOOL OF MEDICINE • DEPARTMENT OF FAMILY & PREVENTIVE MEDICINE
HealthGrades.com info on Dr. Scherger
FM and the Medicalization of Misery, an article by Dr. Nortin Hadler, published in the Journal of Rheumatology in August of 2003, appears to be the origin of the title of the Scherger post
The Human Condition, Wellbeing and Ill-Health, a review of the article by Dr. Hadler (above) from a blog titled "It’s All In Your Mind: MUS, GUS, XUS, Discussing the flotilla of Unexplained Symptoms and its impact on patients and their families"
(MUS - medically unexplained symptoms
GUS - Gastrologically U S ?
XUS - ???)
The Hadler book "The Last Well Person: How to Stay Well Despite the Health-care System" by Nortin M. Hadler, M.D., which was mentioned in Scherger's post, on google with lots of references (Note: I'm going to check this book out at our local bookstore to see if I want to bother purchasing it, even at the much more reasonable used book price on amazon. I am, after all, currently un(able to be)employed.)
The Hadler book on McGill-Queen's University Press
An individual's review of Hadler's book "The Last Well Person"
A mention of the Hadler book on s-a-f-e.org, Secure America’s Future Economy (SAFE)(formerly Seniors Against Federal Extravagance)
safe.org review
The Hadler book on amazon
The Hadler book, JAMA review
The Hadler book, review from UNC at Chapel Hill Endeavors magazine (Nice pic of the doc on this one.)
Note: The Hadler book rates well on Amazon. I haven't paid a whole lot of attention to the reviews of the book because I haven't read it yet - or even decided if I want to read it.
Interesting blog post about Revolution Health
So, without further ado, here it is: From Dr. Joe Scherger's blog on Revolution Health:
COMMENTS to "Be Well, Not Medicalized 4 - Fibromyalgia" blog post, IN REVERSE CHRONOLOGICAL ORDER
I'll keep this comments site updated until I'm no longer interested in doing so or until Dr. S's post is taken down, whichever comes first.
If you feel like it, leave a comment here or on Dr. Scherger's site. Thank you!
Sequel to this post here.
There's a blog post about FM on Revolution Health (copy and link at the end of this post) that has had me in a tizzy ever since I first saw it on 9/10. I originally found out about this blog post on Dominie Bush's 9/10/07 newsletter. (Thanks again, Dom, for the great job you do and have done for many years in bringing us excellent and timely info about what's going on with FM & CFS.) This is what Dominie's newsletter blurb said:
HORRID FIBROMYALGIA ARTICLE
A reader sent this link--outrageous!!! And by a doctor??
http://www.revolutionhealth.com/blogs/drscherger/be-well-not-medicali-6867?msc=A62775
Here's part of what he said:
"If you think you have Fibromyalgia, get over it. Do not get trapped, or medicalized, into thinking you have a chronic health condition. Reduce stress, focus on your purpose in life, be positive, get restful sleep and regular exercise. You too can be well!"
Good grief!!! There is a place for posting responses at the end of this article. He says he's been treating fibromyalgia patients for 20 years. Oh yeah? Those poor people!
After reading this, I went to the doctor's blog post and read the real thing. My first reaction was: I got angry.
I kind of lost it. I submitted a comment that wasn't very professional. To say the least:So, Dr., is English your second language? Aside for the entire post being bunk, there are several grammatical errors. Where have you been keeping yourself? In a cave? For a medical doctor not to know that Fibromyalgia is a real diagnosis with its own very real diagnostic medical code (since 1987) is ignorant at best. I would expect much better from Revolution Health and I'll be sure to tell them so. And you should take care to do the required research before posting such drivel about people who have already had to put up with far too much insulting behavior in their lives to take one iota more from an apparent quack such as yourself.
Posted on 9/10/07 Site PresenceSherrilLynn
The blog author, Dr. Joseph Scherger, is a professor of clinical family and preventive medicine at the University of California, San Diego School of Medicine (can't help but wonder if this article is the best preventive medicine advice he can come up with) and he is a member of Revolution Health's medical expert team; he is their Men's Health Expert. My own research tells me he also practices family medicine in Del Mar, CA and has been in the business for 32 years.
Dr. Scherger must have fixed (most of) the grammatical errors in the blog post that I mentioned in my comment above. (Drat! - and I didn't get a copy beforehand.) He responded to my comment promptly (I added the bold text):
Personal insults aside, I have been reading these responses with great interest. First, let me clear one thing up. Revolution Health misrepresented me when they put on their home page that I do not think that Fibromyalgia is real. This condition is very real, and those of you who suffer from it and have responded are testimony to that. Unlike many primary care physicians, I like helping people with it and have had some success. I am also humble by the mystery of this condition, and I realize that our knowledge of it is very limited.
I have two questions for those of you who have been responding? Why do you think the Fibromyalgia occurs mostly in women? Second, why do you think that people with it are generally between the ages of 30 and 60? In 30 years of medical practice, I have never seen a senior citizen with this diagnosis.
WEEEEEELLLLLL. This response made me more angry. But now the anger was more the slow burning, I-don't-get-mad, I-get-even type.
His comment about personal insults did help me, though. I really don't want to be that type of writer or speaker. I want to be the voice of reason. (And carry a big stick.)I've never found where Revolution Health said that Dr. Scherger did not "believe in" FM. Perhaps they changed that, I don't know.
Tell me true, dear readers, after you read the offending post (sorry, just couldn't bring myself to put it at the beginning of my post), does he sound humbled by the mystery of this condition, or like he realizes that our knowledge of it is very limited?
I decided not to respond to Dr. Scherger's question posed in his response, about why women of a certain age are the predominant group diagnosed with FM. How should I know??? And I don't care to speculate. But I did come across a speculation as to the answer to this question, by a well qualified doctor in an ImmuneSupport article. I added this comment to Dr. Scherger's post on 9/27:
"Q&A Session with ME/CFS and Fibromyalgia Doctor Lucinda Bateman, MD -September, 2007"
Thank goodness there are more doctors now who know FM & ME/CFS are real, than there are those who don't. Anyone coming to this article and not knowing any better than to believe what it says, please feel free to email me for links to current and accurate information.
I did not care to speculate on Dr. Scherger's question about why more women than men seem to have FM, but here is an answer from an M.D., from the ImmuneSupport .com September newsletter article. Q: Why, do you think, do more women than men seem to have CFS and FM?
Dr. Bateman:The differences in male and female physiology and genetics are likely to play a role, but I also think there are complex differences in communication styles, access to medical care, cultural norms and biases. The cause of illness probably matters as well, since the Dubbo [Australia] study found post-infectious fatigue followed in 11% of all four infections studied - and there was equal gender distribution or slight male predominance. And Fibromyalgia studies suggest that FM (as currently defined) may be 10 times more common in women.
I've posted a lot of other accurate information about FM in the comments section of Dr. S's blog post. That comments section has run on to nine pages now. I think the pages are difficult to navigate, and it's also difficult to post anything but straight text. I've put all of the comments from this site here, for easy viewing. I'll keep it updated until I'm no longer interested in doing so or until Dr. S's post is taken down, whichever comes first.
This is a copy of the email I sent to Revolution Health's Customer Care department on 9/11:
In his blog post located at http://www.revolutionhealth.com/blogs/drscherger/be-well-not-medicali
-6867?msc=A62775, Dr. Joe Scherger has written an entire article of myths and untruths about Fibromyalgia. If this is the standard your medical bloggers are held to, I don't want to be a member of Revolution Health. I would have expected better from you. Much better.
This is the response I received from them on 9/14:I do understand your frustrations and concerns that you may have regarding the blog that you have made reference to. However, the blog postings from other Revolution Health Users and Doctors are all personal opinions in which may or may not be based on their personal experiences and medical knowledge.
I have provided you a link on our guidelines about posting: http://www.revolutionhealth.com/about/posting-guidelines
If after reviewing our Guidelines and you strongly feel that the content of a person's blog is inappropriate or offensive you can feel free to click the "Report Abuse" button that is located at the bottom of the posting. In doing so an e-mail regarding the posting and its content will be sent to the appropriate staff for evaluation, in which case will be review for possible removal.
I have included a tracking number in the subject line of this e-mail. If you would like to contact us again about this message, please refer to this number: 480070-82823578
Please don't hesitate to contact us with any additional comments, questions or concerns. Write to us anytime at: customercare@revolutionhealth.com.
Re: the section of RH's response that says "the blog postings from other Revolution Health Users and Doctors are all personal opinions in which may or may not be based on their personal experiences and medical knowledge": But wouldn't you expect that a doctor whose blog is sponsored by RH in the sense that they have made him their Men's Health Expert, would be accurate AND based on his medical knowledge? And what about that Men's Health Expert thing - why's he writing about what is, so far as we currently know, a predominantly women's problem anyway?
After reading RH's Guidelines, I noted that: I obviously do find Dr. Scherger's post offensive; and I feel it violates the guideline that says don't "express negative opinions without supporting facts." I'm going to write and tell them so, but the more people who support this view, the more effective the protest will be. Hence one purpose of this post. Have I convinced anyone new?
A little info about RH:
The Revolution Health board of directors is chaired by AOL Co-Founder Steve Case, and its members include former Secretary of State Colin Powell; former Fortune 500 CEOs Jim Barksdale, Frank Raines, Carly Fiorina and Steve Wiggins; leading venture capitalists/financiers Miles Gilburne, Jeff Zients, John Delaney and David Golden.
...part of the Revolution LLC family of companies created by Steve Case to be a disruptive force in industries in need of a "better way."
A better way indeed. I was a member of another online health organization that was bought out by RH. That's how I came to my membership with them. But a couple of other organizations of which I'm a proud member are also affiliated with RH: National Alliance for Mental Illness and the National Sleep Foundation.
This post has run long but I'm not through with the subject, not by a long shot. There's much more material from Dr. S in the comments section to his post. But I'm wondering if I'm obsessing over this and if I should maybe just get over it (to use Dr. S's words). I'd also like to know what other people think who also have a vested interest in FM and what's said about it. To that end, this week I will be asking others whose opinions I have come to respect what they think about this topic, by promoting this post. In the interest of fairness I'll also post a link to this blog post on Dr. S's blog post comments. I think I could let it go a lot sooner if the offending post were to be removed from the Revolution Health site.
In my cursory research of Dr. Scherger's background, I have not found anything else incriminating or that I would even disagree with. In case anyone else is interested in looking into this further, here are the links I've come up with so far:
UCSD SCHOOL OF MEDICINE • DEPARTMENT OF FAMILY & PREVENTIVE MEDICINE
HealthGrades.com info on Dr. Scherger
FM and the Medicalization of Misery, an article by Dr. Nortin Hadler, published in the Journal of Rheumatology in August of 2003, appears to be the origin of the title of the Scherger post
The Human Condition, Wellbeing and Ill-Health, a review of the article by Dr. Hadler (above) from a blog titled "It’s All In Your Mind: MUS, GUS, XUS, Discussing the flotilla of Unexplained Symptoms and its impact on patients and their families"
(MUS - medically unexplained symptoms
GUS - Gastrologically U S ?
XUS - ???)
The Hadler book "The Last Well Person: How to Stay Well Despite the Health-care System" by Nortin M. Hadler, M.D., which was mentioned in Scherger's post, on google with lots of references (Note: I'm going to check this book out at our local bookstore to see if I want to bother purchasing it, even at the much more reasonable used book price on amazon. I am, after all, currently un(able to be)employed.)
The Hadler book on McGill-Queen's University Press
An individual's review of Hadler's book "The Last Well Person"
A mention of the Hadler book on s-a-f-e.org, Secure America’s Future Economy (SAFE)(formerly Seniors Against Federal Extravagance)
safe.org review
The Hadler book on amazon
The Hadler book, JAMA review
The Hadler book, review from UNC at Chapel Hill Endeavors magazine (Nice pic of the doc on this one.)
Note: The Hadler book rates well on Amazon. I haven't paid a whole lot of attention to the reviews of the book because I haven't read it yet - or even decided if I want to read it.
Interesting blog post about Revolution Health
So, without further ado, here it is: From Dr. Joe Scherger's blog on Revolution Health:
Be Well, Not Medicalized, 4 - Fibromyalgia
Posted on 02:13PM (EDT) on 2007-08-26
Dr. Nortin Hadler, author of The Last Well Person, is a rheumatologist, an internist who specializes in musculoskeletal conditions. What his says about Fibromyalgia is that it is condition where a person combines the normal aches and pains of life with chronic stress. There is no known pathology in the muscles or nerves of people with Fibromyalgia. The condition is strongly associated with people who are unhappy, depressed and have a lot of stress.
I generally agree. I have been working with patient with Fibromyalgia for over 20 years. I'm convinced that it is a lifestyle condition, not some disease that takes over you like a cancer or rheumatoid arthritis. There is a lifestyle "pathway" out of Fibromyalgia that all people who want to be well may follow: stress reduction, a positive and meaningful focus to life, regular physical activity and restful sleep.
Some people with Fibromyalgia have a very specific problem -- poor sleep. Two experiments with college student volunteers who were put in a sleep lab showed that when they were deprived of deep sleep for several days, they developed Fibromyalgia. It seems that our neuromuscular junctions need deep sleep in order to recover from daily activities. People under stress often do not get deep sleep, hence the physical pain of the condition. These experiments showed that the students who were athletes or in good physical condition were more resistant to the Fibromyalgia. Hence, staying in shape makes you more resistant to these pains.
So, if you think you have Fibromyalgia, get over it. Do not get trapped, or medicalized, into thinking you have a chronic health condition. Reduce stress, focus on your purpose in life, be positive, get restful sleep and regular exercise. You too can be well!
For more information on Fibromyalgia, see the Revolution Health Page: (on FM)
COMMENTS to "Be Well, Not Medicalized 4 - Fibromyalgia" blog post, IN REVERSE CHRONOLOGICAL ORDER
I'll keep this comments site updated until I'm no longer interested in doing so or until Dr. S's post is taken down, whichever comes first.
If you feel like it, leave a comment here or on Dr. Scherger's site. Thank you!
Sequel to this post here.
Wow! I am so proud of you for sticking up for folks with FM. It is a real disease. I believe it has a hormonal/metabolic component and instead of thinking of the disease as a 'mystery' or 'nonentity', I'd like to see more of a willingness to look for the answers we so desperately need.
ReplyDeleteYou show me that it is the FM patients who will find the answer like you and me. Keep doing what you're doing and use that anger to positive ends like this blog!
I'm rooting for you.
Thank you!
ReplyDeleteExcellent post and I'm so glad you left me a comment so I could read it.
ReplyDeleteGet over it? He has no clue just how much I truly wish I could just "get over it". It's funny how I got it after two cancer surgeries but didn't have it before them. It's funny that I didn't even know I had it just thought I hurt alot until a rheum diagnosed me and that rheum HATES diagnosing FM!
There are those who will never take FM or chronic pain seriously and those are the ones not worth wasting our time on. If lifestyle changes, more sleep, more exercise, or anything similiar would fix it doesn't he think we'd be trying it?
It makes it sound to me like he's just saying that people who like to wallow in self-pity, be lazy, and not take care of themselves get it. I find that highly offensive.
Thank you again for commenting and allowing me to read your blog. :)
Sherrillynn
ReplyDeleteI am simply stunned, ground into the ground ticked off at his post because he totally misses the boat. Indeed many, MANY people with fibromyalgia have poor sleep which often triggers the onset and or worsens the conditions due to the lack of or shortened deep periods of sleep. It is not a LIFESTYLE condition because that implies a lifestyle brings it on... a CHOICE.
Man - oh - Man! I haven't been able to exercise for two weeks and tonight I'm doing everything possible to get my back to ease up on the spasms.
My lifestyle? Ugh! 14 years of this physical battle and I can tell you that I believe in my heart of hearts that my sleep, my TMJ, my hormones, my diet, my emotions, my posture, my everything plays a part in what worsens my pain.
Sleep better? Sure take my kids for the week, put me in a sleep number bed after an hour of whirlpools, massage and soothing music, feed me nutrient rich foods and don't make me answer the phone or clean a room, just gentle exercise with a personal trainer and yoga master while this doctor handles MY life - only then would you see whether my lifestyle choices create this non-medical healthcare problem.
I will indeed be writing about this on my blog AFTER I can get my back, neck, hip and ribs to stop hurting so darn much - me and my silly lifestyle choices.
Thanks for putting me onto this, you will be THE link I remember. :-) Tam
Hi Jo and Tam, Thanks for the responses. It seems like you're both picking up on the "blame the patient for being sick" attitude that I feel from Dr. S. Disturbed sleep is one of the major symptoms of FM. Tam your post made me wonder, if I went off to live on a desert island with no stress (and a really nice, comfortable place to stay), if even then I would be able to get restorative sleep on a regular basis. The island probably isn't going to happen, though. ;-) I'll keep dealing with it the best I can. Sounds like you ladies will do the same!
ReplyDeleteHi Sherril,
ReplyDeleteWhat a frustrating situation! Unfortunately, it is one that is all too common for FM and related conditions, and something patients continually have to combat. That's why dialogue is so important, and that's what your post has enabled. What an eye-opening thing to read.
Note to self: never visit Dr. Joseph Scherger's office no matter how much I need a doctor.
ReplyDeleteAs for his question about age I was only 12 when I got fibromyalgia. I know that a lot of women get diagnosed in their thirties but they have been sick for decades. Maybe senior citizens don't get diagnosed as often because insensitive doctors just think it's old age pains or they can't get diagnosed.
Hi Laurie, Sara,
ReplyDeleteThanks very much for your comments.
I had "growing pains" in my calves when I was in elementary school. Now we know there is no such thing as growing pains, and that kind of pain might be early warning signs of FM. So I'm guessing I've had it for a long, long time also. I'm 50 now.
Sherril,
ReplyDeleteI'm of the same opinion as you regarding this "so-called" doctor. He is rather condescending in his comments and I question his opinion in light of his area of expertise. Yes, women are more stressed than men. Stress does exacerbate the FM condition. I do not believe from all of my research, readings and talking to other doctors that it is the leading cause of FM. I would also not be inclined to read material from an agency that utilized someone who made this kind of observation. He is basically saying it is all in our (women) heads and we should just lighten up. My final opinion is that he is a pompous ass.
Well, I'm 'late at the gate', as is per normal for me. I just found Dr. Scherger's article tonight (this morning? It's after 2 AM here...) At any rate, I believe I now, at the age of 63, qualify as one of the 'senior citisens' that never have this dx? This man is trying to take us all back to the 'dark ages' of medical 'reason?' that I encountered when I first became ill...that was in 1972. Obviously, I hit the wall as far as any real diagnosis back then, but was certainly 'labeled' medically. First, as a hypochondriac, secondly as chronically lazy and lastly as a person with major psychological problems. I have, in fact, developed quite a few psychological problems over the years, but these are the RESULT of fighting both the disease process and the treatment by the medical establishment. I am positive I was totally mentally healthy before I became ill.
ReplyDeleteI intend to leave a/n(amended) copy of this on the comments section at Revolution Health. I am so incredibly angry right now, I could burst a blood vessel. After 'pioneering' to get my conditions recognised in some manner, and working with others to finally be 'legitimised', I hate this!! I do now have a doctor who believes in FM, as well as the related 'syndromes' I also suffer, and who is more than willing to treat them in an aggressive manner. I am emailing him a link to the article, though of course there is nothing he can really 'do', except possibly leave a few comments and opinions from another medical doctor.
Again, I wish I had found the article and your blog while the discussion was still ongoing, but at least I can have the satisfaction of venting. It does do a body good!!
Thanks so much for writing this blog.
Peace and Love
Caroline Witte
Caroline, thank YOU for reading and commenting on my blog!
ReplyDeleteNever fear, it's not too late to get into this debate. It's not over till the fat lady sings and that would be me, in this case. There is a warm up to the next, or last post (I haven't decided which yet) I'm doing on this subject, at http://theiciexperience.blogspot.com/2008/01/chronic-monday-can-you-believe-it-new.html.
I hope to get the next/last post done by next month, barring any setbacks.
Thanks again for reading and commenting,
Sherril
Thank you and welcome to the ICIE!
ReplyDelete