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New York Times article-fibro
Did anyone get to read the New York Times article of Jan. 14th, 2008? There seems to be a few drs. that say that fibro IS NOT REAL and the drug companies are going to get rich selling Lyrica to people who don't need it. Look it up on the web, it very interesting.........Warm hugs to all.
I don't know what macrocytic anemia is. The total blood volume is tested with the same nuclear med test used for a condition in which too much blood is made - poly something. The low volume was discovered by Dr. David Bell, and Dr. Streeten (now passed away). So googling may give you more specifics. It's related to the dysautonomias that was so common.
It's doesn't show on regular blood work because they look for high white cell count and low red cell count, and plasma, i.e. ratio. This is looking at total quarts in the body. Procrit does help for some people but has it's risks of clots from thickened blood. IV saline infuses work for a few days to a week, and over time can help someone get over a lull and to a better platue. Blood transfusions don't work since the body doesn't maintain the new volume and it's too risking to transfuse that often.
It's doesn't show on regular blood work because they look for high white cell count and low red cell count, and plasma, i.e. ratio. This is looking at total quarts in the body. Procrit does help for some people but has it's risks of clots from thickened blood. IV saline infuses work for a few days to a week, and over time can help someone get over a lull and to a better platue. Blood transfusions don't work since the body doesn't maintain the new volume and it's too risking to transfuse that often.
I find it interesting when you wrote, " These include average of 30% below normal total blood volume which would be considered potentially lethal in a car accident victim. " I have had a macrocytic anemia for years; I wonder if they are connected ?
Take care
Kyleen AKA Rhyannon.
Take care
Kyleen AKA Rhyannon.
The 'but' was supposed to be a 'before'.
"denegrated it so that it would not longer be believable, but (before) adding any information"
"denegrated it so that it would not longer be believable, but (before) adding any information"
I saw it a few days ago and wrote a commentary to them. Anyone is welcome to borrow any part of it for their own letter if they like. Or just write a short amount about your own experiences. (I didn't add an opinion on the article at the article page - I wrote a letter to the editors.)
____
Re: " Drug Approved. Is Disease Real?" by Alex Berenson
Dear NYTimes,
What a badly written article. I would have expected much better from the NY Times. This wouldn't prompt me to look for more news in this paper.
This writer had made up their mind that this illness isn't real. Then he at every turn denegrated it so that it would not longer be believable, but adding any information that might support it. Has this writer spent even a day with a patient of this illness before dismissing it with such disgust in his tone?
Quoting from the article, "features a middle-aged woman who appears to be reading from her diary." Appears to be? Middle-aged? Both are derogatory in this context for no reason whatsoever. The ad features a woman in her 40's or 50's, reading from her diary.
People with this illness have "vague complaints". No, the symptoms are very different than a healthy or depressed person experiences, and any doctor treating this illness can recognize them, going much beyond IBS and pain complaints. They include stroke-like brain dysfunction (commonly called brain fog) that is distinguishable with psychoneurological testing, specific visual changes, strange knots under the skin, immune dysfunctions that are measureable, and the list goes on and on. There's are thousands of research articles showing physical body changes unique to FM and CFS. These include average of 30% below normal total blood volume which would be considered potentially lethal in a car accident victim. Also, there is the recent research, replicated in various labs in the world, showing unique gene uptake patterns differentiating FM and CFS (from each other, healthy people, and other illnesses such as depression.)
The researchers who started career moves in FM and CFS and then didn't find concrete answers to boost their careers, are often the stories behind these disgruntled doctors. Maybe Mr. Berenson could use his investigative skills to uncover that part of the story. The CDC, FDA and College of Rheumotology support this as an illness, (and it is researched at hospitals such as Hopkins and Mayo Clinic.) These are not rouge organizations that take on every set of symptoms that are mentioned to them. It took years to earn their respect based on, yes, research! Mr. Berenson's dismissal of something respected by these prestigious medical communities so easily without more depth to his investigation efforts, was sad.
Also, if this author had taken even a moments of time to google Lycria, he'd have found forum after forum of people trying it out and getting their lives back from pain. However, there are dangerous side effects too that they mention. Now THAT would have been a story worth bringing out into the open. It appears to be addictive in some patients requiring ever increasing doses, but not allowing them to come off without a severe increase in symptoms!
Overall, this is just sloppy, uninformative, and judgementally-toned reporting. I hope the Times takes note, and makes changes in the future.
Sincerely,
(Me)
______________
Name
Address
Phone
Email
____
Re: " Drug Approved. Is Disease Real?" by Alex Berenson
Dear NYTimes,
What a badly written article. I would have expected much better from the NY Times. This wouldn't prompt me to look for more news in this paper.
This writer had made up their mind that this illness isn't real. Then he at every turn denegrated it so that it would not longer be believable, but adding any information that might support it. Has this writer spent even a day with a patient of this illness before dismissing it with such disgust in his tone?
Quoting from the article, "features a middle-aged woman who appears to be reading from her diary." Appears to be? Middle-aged? Both are derogatory in this context for no reason whatsoever. The ad features a woman in her 40's or 50's, reading from her diary.
People with this illness have "vague complaints". No, the symptoms are very different than a healthy or depressed person experiences, and any doctor treating this illness can recognize them, going much beyond IBS and pain complaints. They include stroke-like brain dysfunction (commonly called brain fog) that is distinguishable with psychoneurological testing, specific visual changes, strange knots under the skin, immune dysfunctions that are measureable, and the list goes on and on. There's are thousands of research articles showing physical body changes unique to FM and CFS. These include average of 30% below normal total blood volume which would be considered potentially lethal in a car accident victim. Also, there is the recent research, replicated in various labs in the world, showing unique gene uptake patterns differentiating FM and CFS (from each other, healthy people, and other illnesses such as depression.)
The researchers who started career moves in FM and CFS and then didn't find concrete answers to boost their careers, are often the stories behind these disgruntled doctors. Maybe Mr. Berenson could use his investigative skills to uncover that part of the story. The CDC, FDA and College of Rheumotology support this as an illness, (and it is researched at hospitals such as Hopkins and Mayo Clinic.) These are not rouge organizations that take on every set of symptoms that are mentioned to them. It took years to earn their respect based on, yes, research! Mr. Berenson's dismissal of something respected by these prestigious medical communities so easily without more depth to his investigation efforts, was sad.
Also, if this author had taken even a moments of time to google Lycria, he'd have found forum after forum of people trying it out and getting their lives back from pain. However, there are dangerous side effects too that they mention. Now THAT would have been a story worth bringing out into the open. It appears to be addictive in some patients requiring ever increasing doses, but not allowing them to come off without a severe increase in symptoms!
Overall, this is just sloppy, uninformative, and judgementally-toned reporting. I hope the Times takes note, and makes changes in the future.
Sincerely,
(Me)
______________
Name
Address
Phone
Good news.... people are speaking out:
http://www.nytimes.com/2008/01/17/opinion/l17disease.html?_r=2&oref=slogin&oref=slogin
http://www.nytimes.com/2008/01/17/opinion/l17disease.html?_r=2&oref=slogin&oref=slogin
I read it, rolled my eyes and thought to myself "the abuse is still continuing". = (
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