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Monday, October 29, 2007

Chronic Monday: More On Dr. Scherger and his "Get Over It" Fibromyalgia Blog Post

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We wish getting over it was as easy as Dr. Scherger makes it sound; or as this pole vaulter makes it look!

This post is a sequel to Chronic Monday: Be Well Not Medicalized 4 FM...?.

I have to admit that I decided at the last minute to take it easy on Dr. S. I found a much more in-depth description of his career (on RevolutionHealth.com, who would have guessed?), and in addition to his medical degree he also has a Masters of Public Health (MPH). His first job after school was as a migrant health physician for two years in California. Now he may have had to do this to pay off a student loan or something, but still he did it. And the rest of his record seems rather stellar and exemplary. I kinda hate to drag him through the mud for one blog post, no matter how inaccurate, insensitive and insulting it is. So I'm just going to pull some sound bites out of the 25 or so comments that were made to his post and to my review of his post, all of them negative, then in a future post I'll briefly analyze the circular logic he uses in his responses to our comments and we'll be all done with him!

Sound bites from comments to my post:

"Thanks for showing people they need to keep looking for someone who will care and can say they don't have all the answers. YOU DON'T (Dr. Scherger) nor does any one doctor so you get over it."

"What 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."

"I'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."

Sound bites from comments to Dr. Scherger's post:

'The tone of this whole editorial is quite disrespectful and insensitive. As a journalist who has suffered with hypoadrenalism/hypothyroidism, I hope Dr. Scherger is not unlucky enough to suffer from any physical maladies and end up being treated callously by medical professionals who tell him to "get over it.""

"I agree, Dr. Scherger, that I feel I have no purpose and that I am angry, both of which occurred as a result of my being unable to "get over" having fibromyalgia."

"As someone who attempted several times to "get over" a fibromyalgia diagnosis provided by five physicians, not only did my existing symptoms worsen but I developed new ones that proved nearly fatal, resulting in frequent hospitalizations."

"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."

"May you never have to face a doctor who "pooh-pooh's" your very real problems because they are not educated enough to realize there could be really something behind your ailment, that he or she just doesn't want to have to deal with it."

"OH MY GOD!! Thank you SO much for letting me know that this disease (it IS now classed as a disease by the AMA after all) that I have had for going on 12 years now is not really happening after all."

"It is very difficult for me to believe that you would find anyone with Fibromyalgia willing to be your patient. Fibromyalgia is VERY real and VERY disabling as SSDI will agree. To see in print such misinformation as is given out by this doctor is very distressing as it could leave those with very real problems without the proper medical attention. This doctor should seek another career!"

"This article is absolutely insulting. I spent years trying to convince myself that I do not have "a condition". I do not want to be medicalized. But I have done everything recommended by the medical world to "get over it", including regular exercise, reducing stress, a regular bedtime, and changing my diet. For someone that truly has Fibromyalgia, there is no way to "get over it", there are only ways to "get through it". I do what I can to get through each day and try and live a normal life. I am educated, a counselor, a sunday school teacher, a mother. By no means is Fibromyalgia a lifestyle. My prayer is that doctors who do not believe in this condition will come to realize it is real so they can help the people wh are depending on them."

"Well now, aren't you cute? I am so relieved to know that, as a mis-diagnosed fibromyalgia patient, all I have to do is reduce stress and get some sleep. Now why hasn't someone mentioned that to me before? But hey, I am so pleased to read that I am ahead of the game, because I already have a "positive and meaningful focus to life" and I get "regular physical activity." ... I feel sure that you have done years of in-depth studies involving hundreds of mis-guided FM patients to come to these conclusions, right? Of course. You would never carelessly state these things because you and Dr. What's-His-Name--Hadler?--have decided that we are all unhappy, depressed, and under too much stress. I have always said that I would not wish fibromyalgia on my worst enemy, but I've just changed my mind. I think that you might need to suffer from this unfortunate ailment for just a little while--maybe a month or three--to clear up your ignorance. Then you can get over it.""

"So glad you appreciate the dialogue now will you please sign off. You are one of those people that every time you open up your mouth you show how much you don't know and your mouth is full of your own stuff."

"I am a nurse that has seen knots appear on pts that are suffering with fibromyalgia. The pain is real and people suffer... People are sad because they are suffering...not the opposite."

"I cannot believe this article ... really I can't... How could you rule out a cause for people with fibromyalgia -- and say "get over it". I am sure everyone who has it would love to find the trigger - and it's not as easy as sleep and stress reduction and a positive attitude."

"Well wouldn't it be wonderful if we could all "just get over it". Drs like you are one of the reasons so many of continue to suffer with this awful condition. Like high blood pressure, diabetes, or depression (chemical inbalance), or a host of other illnesses. They cannot be wished away."


"I hate to say it but sometimes I wish people who have this opinion regarding the suffering of others, would someday get to experience the fatigue, reduce cognative ability, pain and the disregard for litteraly having major parts of life taken away. I bet you'd be stressed too if you lived in a foggy world of pain and sleep deprivation. It is especially disturbing educated person who takes an oath to help people, is doing so much harm. I really wouldn't wish this on anyone. I'm disappointed that this site would even would have a member with such an opinion. It makes me question the information you provide.

One more post on the doctor's responses to the comments to his blog post should wrap this series up.


On a lighter note...

I'm apparently a yellow crayon. What color are you?

You Are a Yellow Crayon

Your world is colored with happy, warm, fun colors.
You have a thoughtful and wise way about you. Some people might even consider you a genius.
Charming and eloquent, you are able to get people to do things your way.
While you seem spontaneous and free wheeling, you are calculating to the extreme.

Your color wheel opposite is purple. You both are charismatic leaders, but purple people act like you have no depth.

Friday, October 26, 2007

Special Notice: National Blog Posting Month is in November

I will do my best to participate. It should be good for me. And maybe for my readers. I will have to post shorter - much shorter. And I will see what that is like and if daily might be a better way for me to go.




The Randomizer is just an easy way to check out all the participants who are in NaBloPoMo. To be part of the Randomiser, make sure you're registered at the official website and have your Blog URL in your profile.

So: What is it?

It's NaBloPoMo, November, the month in which you post something to your blog every day, in accordance with the National Blog Posting Month challenge!

"Last year everybody just went for it, posting thirty days in a row and maybe hoping to win a prize in the random drawing. This year, for those of you who suspect you might run out of gas, maybe you'd like to try blogging on a theme. Follow a news story for the month; get deeper into an issue that you want to educate yourself about; keep us abreast of how your yoga practice / daily muffin-eating regime / matchstick Eiffel Tower is progressing.

Or simply use NaBloPoMo as a writing exercise, as an easier-to-accomplish alternative to the marathon that inspired it: National Novel Writing Month.

You can sign yourself up by clicking on the Members tab. Doing so will mean that all the other crazy people who are doing this will be able to find you and your blog.

The Forums tab will take you to a place where you can commiserate with other people who are loving NaBlo, hating NaBlo, tearing their hair out over NaBlo, or cheating by backdating their posts.

The Groups tab will help you find other likeminded individuals. I'm looking at you, knitting bloggers.

By the way, "every day" means Saturday and Sunday, too. Hence the above reference to "cheating." Not that you would.

You can do your posting here, you can do it on your blog, or you can cross-post in both places, it's completely up to you."

And there are prizes!

Sock Zombies are too cute:





Blararg!,
one of several precious little "animals"


Cool baby stuff: A three-piece custom crib set, and three pillow-and-blanket sets for the runners up


And lots more! Prizes will be awarded randomly among those who meet the challenge and post every day all month.


Hmmm... looking at the length of this post, I'm wondering if I'm going to have a hard time shortening them up...

Wednesday, October 24, 2007

Leave Your Disability Behind in the Virtual Reality of Second Life

I said this was going to be a fun post so that's what it will be. I'm not going to put any quotes or statistics in about how good Second Life is for people with chronic illness, even though it is. Just fun stuff. For now.

My name in SL is Verna Jewell. My grandmother's name was Verna and I had to pick a last name from a list provided to me by SL when I first signed up. This picture is Verna, v. 1.0.

I'm into fashion and always have been. There's lots of it in SL. I might even be able to design some myself when I'm figure out how to do it...

You can buy or design your own: Tattoos, skins, gestures, hair, eyes, accessories, clothing, furniture, houses... whatever you can think of.

And there are even art galleries. The artists actually sell virtual and/or real life art.


Tonight, Wednesday 10/24, a character from an episode of CSI NY will escape into Second Life, with Second Life residents taking part in the "investigation." This story will carry on into sometime in 2008. Anthony Zuiker, creator of CSI himself logs in to Second Life every day and is working to create a "multimedia, virtual crime lab." According to Zuiker "You’ll now be able to actually solve one crime per month, like a real investigator." Here's a clip from the show tonight.


You can now watch Eqisode 405, Down Rabbit Hole, in its entirety.

I forgot to mention that everyone can fly in SL. Too cool, huh?

Go here to get started on YOUR Second Life.

Sunday, October 21, 2007

Chronic Monday: Blog Action Day Statistics and Chronic Illness - Not So Much.


20,603 Blogs Participated
23,327 Blog Posts (Results obtained using Google Blog Search)
More general stats at http://BlogActionDay.org.

I searched on "Blog Action Day" and the different chronic illnesses that I wrote about, also using Google Blog Search. Turns out I didn't have a whole lot of company. Here are my results.

On Blog Action Day there were:

2* blog posts Fibromyalgia
2 on Chronic Illness
1* on Gulf War Syndrome
1* on Endometriosis
2* on Multiple Chemical Sensitivity
2 on Food Allergies
0 on Temporal Mandibular Joint Syndrome
1* on Chronic Fatigue Syndrome
1* on Myalgic Encephelitis

*including me

Actually, some of my topics didn't get picked up by the search and I don't know why and I don't know enough to figure it out and correct it. The learning curve. I wish it would curve faster.

It would be interesting to see if the number of people writing about environmental illness (EI) when asked to write about the environment increases as time goes on. I don't know if Blog Action Day 2008 will be on the same subject, the environment, but it would be interesting to see if awareness of EI increases any in the coming year(s).

This is from one of the creators of Blog action Day, Collis Ta'eed's blog, on Building Momentum: How Blog Action Day Got Going:
"...there is a way to relate an environmental issue back to just about any topic"

and
"During the two months of promotion leading up to today I have written over 2,000 emails about Blog Action Day. The floods of people writing to give their support, offer their help and wish us well has been amazing. If you’ve ever had a cynical or jaded day in your life, then take it from me, people want to do good things for the world. SO many people!"

It's a really good post, well worth the read.



Time to lighten up again, I think. As a break from Blog Action Day, and in preparation for next Monday when I will follow up and sign off on the infamous Dr. Scherger and his Be Not Medicalized blog post. I'll chew him up and spit him out and be done with it. Aside to self: Breathe deeply and LIGHTEN UP.

So in the spirit of lightening up, this is kind of cool: I found this "What Kind of Blogger Are You?" blog thing on The AntiBarbie's great blog and it says this about me and my blog:

You Are a Pundit Blogger!

Your blog is smart, insightful, and always a quality read.

Truly appreciated by many, surpassed by only a few


Smart, insightful, appreciated. Nice things to hear, whether they're true or not.

The other fun thing I'm going to do before next Chronic Monday, is to get started writing about the virtual reality phenomenon Second Life, and how it can be helpful to the disabled and/or chronically ill.

Friday, October 19, 2007

Special Notice: Stop the Nuclear Bailout



More info



One other, equally interesting topic I'll mention: The Habitation of Justice blog is having a contest where you can win $100 just for backlinking to this blog. Get the details here.

The blog is pretty interesting too. I'm glad to have found it, will write the author one day about my experience of requesting reasonable accommodation for a disability, from a state agency.

Thursday, October 18, 2007

Special Notice: Blog Action Day Wrap Up

I am SO proud to have been a part of this. Below is a copy of the email I got from the Blog Action Day Team. On Monday I'll see if I can do something in the Chronic Monday blog post to relate their statistics to the issues I wrote about.

The Wrap Up

The very first Blog Action Day was an unprecedented success and
we've got the final wrap up where the site used to be at
http://blogactionday.org complete with statistics, sample posts,
details of the huge amount of press coverage we had all over
the world, quotes and more.

It's a must see. Please feel free to spread the word around as
it's great for people to really see what we achieved together.


******
Thanks

And if I could just say a huge thank you to every single one of
you, all 20,603 registered bloggers who took the plunge even if
it meant going off their regularly scheduled programming and
stood up to be counted.

Also thank you to everyone who helped out with the effort, in
particular Leo Babauta whose contacts, writing and enthusiasm
pushed the enterprise forward, my wife - Cyan Ta'eed who braved
the media and fronted up to interviews around the globe, John
Brougher who put together the superb video, Ryan Allen who
performed the elite coding to keep the site up despite barrages
of traffic and most importantly my Dad - Fuad Ta'eed who valiantly
looked through thousands of blogs to give the tick of approval,
every single day for two months.



So until next year when we get back together for
Blog Action Day 2008,

This is Collis signing off,
on behalf of the Blog Action Day team
http://blogactionday.org

Monday, October 15, 2007

Chronic Monday and Blog Action Day: I Am the Canary; Our Polluted Environment is the Coal Mine

Bloggers Unite - Blog Action Day

I'm writing about the environment today, for Blog Action Day.

Years ago, coal miners took canaries down into the coal mines with them, because canaries are more sensitive to the poisonous coal gases than human beings are. When a bird started acting sick, the miners beat a hasty retreat. The canary usually died.

The following is an excerpt from "Canaries In A Coal Mine", by Kevin Gregg, DC, from the Chronic Syndrome Support Association site:

"Have you ever considered that those of you experiencing FMS, CFS, MCS and GWS symptoms might simply be canaries down the collective mine shaft? What if, like those canaries, you were simply the early warning system for this culture. What if your experiences were exposing mounting health risks for everyone? You are, I suspect, at the far end of a continuum that all of us are on to varying degrees. Placement on this continuum depends only on the degree a person is stressed, starved and poisoned by their life and environment."


My life was pretty normal until the middle of my 6th grade school year. When I was in the 6th grade my family moved from Albuquerque, New Mexico to New Jersey. I went from having majestic mountain views all around me to not being able to see anything much further than I could throw a baseball. I could throw pretty good for a girl.

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I had space. SO much space.
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If anyone puts a billboard up on the highway in NM, the Indians will cut it down. Then they started using metal posts instead of wood for the bill boards. The Indians got a bigger saw. I love those Native Americans.

In NM we lived outside of the city so I didn't see a lot of pollution. In any case, no city in NM has pollution anywhere near on the scale that NJ does. There just aren't that many people in NM. The whole state is in the same telephone area code, for goodness sake. Our neighborhood in NJ was nice (if you think the Mafia is nice, I guess) but whenever we drove anywhere we went through places like Trenton and Newark. Big time ugly.

These are the images of NJ I remember.

Cities ands smog.
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Traffic and smog.
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A sign in Meadowlands, NJ. They've built a park on top of a landfill.

What's in these? Who knows...


As soon as we moved to New Jersey the whole family came down with the Hong Kong Flu. I never seemed to get over mine. I took round after round of antibiotics, to no avail. By the time I was in the 7th grade my parents started taking me to doctors to try to find out what was wrong with me. I didn't have mono. I didn't have allergies strong enough to be causing the kind of congestion I was living with. The last doctor I went to was "vacuuming" out my sinuses. He stuck a thin straw-like metal rod WAY up (down?) my nostrils, one at a time. It sucked the mucus into a bag that was hooked to the side of the machine. My mom told me later she would sit there and watch that thing fill the bag up and feel sick to her stomach. After the vacuuming I would be blessedly clear for a couple of days. Then the congestion would be right back. That last doctor apparently ended up saying I was allergic to the bacteria in my own nose. In Dad's words, I was allergic to myself. After that we didn't go to any more doctors.

My teeth started rotting at an early age: I had my first root canal at age 13. I've had four altogether now, including one that didn't take that I had to have done twice, then I ended up losing the tooth anyway.

We moved to Texas the summer before my junior year in high school. I felt like I was back home again. But there are still a lot of images of pollution in my mind from there. People who swam in Lake Dallas got hepatitis.

Pretty but DO NOT swim in it.


The beaches of the Gulf Coast were not always pretty. We stopped in Mississippi on the way to Florida from Texas once. I had reserved a room with a view of the coast. You couldn't see the ocean from the window. The haze was that bad. I went to walk along the coast and the shore line was littered with trash. There was a big pipe running from the populated area of the coast right up to the ocean. It was dumping scum into the ocean. I don't know where it was coming from or what it was. I went back to the room to read and watch TV.

Driving to Galveston by way of Beaumont I suddenly come upon a landscape filled with oil refineries. They are by the water, the bay. They are pouring out smoke fumes into the air. Day or night, smoke and more smoke. Who knows what they were actually putting in the water.

These are the images of the gulf coast I remember.

Beach scum.
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Oil refineries


I had low back pain from the time my periods started at the age of 13; this is now thought to be a classic symptom of endometriosis. I was diagnosed with endo by laparoscopy when I was 32. (See my 7/28/07 post titled "How This Blog Relates to Live Earth Day" for more on endo and pollution.) I had been telling my doctors I was having a lot of menstrual pain for almost 20 years by then. They finally deigned to diagnose the cause of my pain, when I was not able to get pregnant. For those non-believers among you (yes, you still know who you are), I rarely missed work or school, ever. I only stayed home if I was vomiting, having extremely severe diarrhea, or was running a high fever.

I was diagnosed with multiple food sensitivities and fibromyalgia when I was 32. I learned to practice a rotation diet and for the most part I've been in control of my sinus problems ever since. Unfortunately, the FM has been another story entirely. I had never heard of it when I was diagnosed. There was a grand total of ONE book about it at my local library.

Did you know that since the beginning of the Iraq invasion the US marines have had a brand new piece of kit: pigeons?
"They act like canaries in a 19th-century coal mine. The birds are so sensitive to nerve agents such as sarin and VX that they fall ill at a whiff of danger.

What the soldiers have not been told is that about one in 10 of them are almost as sensitive to nerve agents as the pigeons. There is now mounting evidence that exposure to minuscule amounts of these chemicals can cause permanent brain damage in susceptible people, and that is exactly what happened 12 years ago when thousands of troops returning from Kuwait started to complain of debilitating symptoms."
This above information is from NewScientist.

For the record, my brother is retired Army. He was a CWO 5 who flew and maintained Apache helicopters. He served in both Gulf Wars. I asked him if he had ever heard of the pigeons being used to detect nerve agents. This is what he said:
No, I have never heard of this. Some enterprising young marine may have brought along his pets since they are probably more sensitive to nerve agents than we are. But I think the detecting equipment the military is equipped with is much more sensitive than a bird when used correctly.


In closing I'll just say that I don't understand how anyone who has been where I have been and seen what I have seen and experienced what I have experienced could possibly think that there is nothing wrong with the environment. I've tried, but I just don't understand.


Additional Resources


Canary's Eye View
: Organizations Raising Awareness About Chemicals and Canary Support Organizations.

The Environmental Illness Resource

Multiple Chemical Sensitivity (MCS) and Support Pages


This painting is based on pollution. On the right you can see a colorfull landscape, on the left you see dirty smoke, all kinds of garbage floating in the water. The black tree looks like a ghost who is stretching its dirty fingers to the clean landscape on the right. I made this painting in oil paint.
~ by Reny Juta
the Netherlands
courtesy of http://Flickr.com

Wednesday, October 10, 2007

Special Notice: Dr. Teitelbaum Offering "Short Program" for FREE for a Limited Time


Dr. Jacob Teitelbaum is a leading practitioner of complementary medicine (a combination of traditional and alternative) in the treatment of FM & CFS/ME. I've been waiting months for his site to finish being redesigned so I could do this program. And I was going to pay full price. I figured it would be cheaper than actually going to the doctor, if I could even find a Dr. who know what to do, out here is backwoods southern Georgia where I live. The short program is normally $88.

Description

Short Questionnaire

What is it?


For a Limited time we will be offering our short program for free. You will need to go through the checkout process and use the following code in the "discount code" box. This discount code 6HAJ7B9QTVDG will allow you access to the program. This promotion will run from October 2007 through February 29, 2008. A credit card will be needed to create your account but the discount code will make the total zero.

The Short Program is a simplified questionnaire that takes only 20-30minutes to fill out. It will determine which treatments are most likely to help you and supply detailed treatment instructions, but will not create a complete medical record of your case for your physician or evaluate you for other medical problems.

Monday, October 8, 2007

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:

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. Photo Sharing and Video Hosting at Photobucket 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. Photo Sharing and Video Hosting at Photobucket 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.

Sunday, October 7, 2007

Update On Me

One of the reasons I started to write this blog was to keep friends and family informed of my status. It's turned into so much more, I've kind of neglected writing about where I'm at. So I've decided that once a month, on the first Wednesday, I'll post an update on me.

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I've missed the first Wednesday this month, so I'll just mention the big thing that's happened is I got the denial of my application for Social Security Disability benefits from the Social Security Administration. This was the expected outcome of the application. Now I will get a lawyer and appeal the denial decision. I was thinking of using a lawyer I found on the internet who is based in Atlanta. They would have started my case before the denial came through. Since I have the denial now, I'm going to check out a local lawyer who is recommended by a fellow fibromite, whose opinion I respect very much. Maybe with the local lawyer I won't have to fill out all the paperwork the Atlanta lawyer wants me to fill out.


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Tender PointsPhoto Sharing and Video Hosting at Photobucket




Next update: Wednesday November 6, aka Election Day.

Chronic Mondays

I'm going to set a realistic goal for posting to this site. Once a week, on Mondays I will post a quality piece. I'll call it "Chronic Mondays."



One good thing about not being able to work: I don't have those rough Mondays. All of my days are pretty much the same.

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