Re: Article: Is Fibro Real? Write to the editor!

[Guest guest]

I will read it later. I am afraid I will get severely pissed off if I read it

now. It gets me worse than anything to have ANYBODY doubt this damn disease.

I hope there is a way to get in touch with the editor. hmmmmmm..... maybe I

should not.

hugs,

Debra V.

Suzanne wrote:

http://www.nytimes.com/2008/01/14/health/14pain.html?

ex=1357966800 & en=20865e4d0f0b61d9 & ei=5088 & partner=rssnyt & emc=rss

Y'all, we need to write into this editor...

--Suzanne

---------------------------------

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[Guest guest]

Suzanne, thanks for the heads up on the bit in the New York Times. I

pulled up the article scanned part of it and got so mad that I tried

to find a way to write to the editor but finally just sent an email to

the author of the article in which I asked him if Fibro is not real,

why did Social Security Disability declared that I was totally

disabled on Nov. 7, 2004 and grant me disability based on the fibro,

the degenerative tissue disease in my sterum, the osteo arthritis in

my cervical and lumbar spine???? What really made me mad was that one

of the doctors who supposedly first believed it was REAL has now

changed his mind!!! I think they are trying to say that Pfzier is

justout to make more money (just as I noticed another of Pfzier's

drugs is now about to be sued ---Chantix, out of so many people who

have taken that drug to date, a fraction have had a problem. After I

saw that bit, I found it interesting that there were not ads on TV

tonite using the word Chantix but I know that was the drug they were

suggesting smokers call a certain number. If I could find my started

box, I'd be back on it

>

> http://www.nytimes.com/2008/01/14/health/14pain.html?

> ex=1357966800 & en=20865e4d0f0b61d9 & ei=5088 & partner=rssnyt & emc=rss

>

> Y'all, we need to write into this editor...

> --Suzanne

[Guest guest]

What is the website for the article ?

Re: Article: Is Fibro Real? Write to the editor!

Suzanne, thanks for the heads up on the bit in the New York Times. I

pulled up the article scanned part of it and got so mad that I tried

to find a way to write to the editor but finally just sent an email to

the author of the article in which I asked him if Fibro is not real,

why did Social Security Disability declared that I was totally

disabled on Nov. 7, 2004 and grant me disability based on the fibro,

the degenerative tissue disease in my sterum, the osteo arthritis in

my cervical and lumbar spine???? What really made me mad was that one

of the doctors who supposedly first believed it was REAL has now

changed his mind!!! I think they are trying to say that Pfzier is

justout to make more money (just as I noticed another of Pfzier's

drugs is now about to be sued ---Chantix, out of so many people who

have taken that drug to date, a fraction have had a problem. After I

saw that bit, I found it interesting that there were not ads on TV

tonite using the word Chantix but I know that was the drug they were

suggesting smokers call a certain number. If I could find my started

box, I'd be back on it

>

> http://www.nytimes.com/2008/01/14/health/14pain.html?

> ex=1357966800 & en=20865e4d0f0b61d9 & ei=5088 & partner=rssnyt & emc=rss

>

> Y'all, we need to write into this editor...

> --Suzanne

1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr.

Some treatments are dangerous when given along with other meds as well as to

certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be

afraid to ask for help. It is the first step to trying to make that situation

better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the

same time when it comes to flares and b/c of that potentially take something

another member says the wrong way. And that includes the things that one member

may find funny (even if it's laughing at fibro itself) even though we who deal

with illness whether one such as fibro or multiple illnesses try to keep a sense

of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let

us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

I'll read it later. I took a quick look at it this morning. Based on some

comments about this and the few words I read I am pretty sure I'll get mad at

the writer. How can anyone doubt this disease? She doesn't know what she is

talking about!

--

---------------------------------

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[Guest guest]

I'm with you Debra, If I wrote a letter to the editor it would just get thrown

away because it wouldn't be at all printable or nice. It's really hits a nerve

for me also. GRRRRR

Marti

debra van ness wrote:

I will read it later. I am afraid I will get severely pissed off if I

read it now. It gets me worse than anything to have ANYBODY doubt this damn

disease.

I hope there is a way to get in touch with the editor. hmmmmmm..... maybe I

should not.

hugs,

Debra V.

Suzanne wrote:

http://www.nytimes.com/2008/01/14/health/14pain.html?

ex=1357966800 & en=20865e4d0f0b61d9 & ei=5088 & partner=rssnyt & emc=rss

Y'all, we need to write into this editor...

--Suzanne

---------------------------------

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Good for you . Since you included the other problems you have that

contributed to your getting SSD, he will probably just say if for those ailments

and still say the Fibro isn't real. If they don't believe, they don't believe.

It is so maddening I can hardly discuss it or write or read about someone's

disbelief. It's like saying you don't believe in weather.

Marti

wrote:

Suzanne, thanks for the heads up on the bit in the New York Times. I

pulled up the article scanned part of it and got so mad that I tried

to find a way to write to the editor but finally just sent an email to

the author of the article in which I asked him if Fibro is not real,

why did Social Security Disability declared that I was totally

disabled on Nov. 7, 2004 and grant me disability based on the fibro,

the degenerative tissue disease in my sterum, the osteo arthritis in

my cervical and lumbar spine???? What really made me mad was that one

of the doctors who supposedly first believed it was REAL has now

changed his mind!!! I think they are trying to say that Pfzier is

justout to make more money (just as I noticed another of Pfzier's

drugs is now about to be sued ---Chantix, out of so many people who

have taken that drug to date, a fraction have had a problem. After I

saw that bit, I found it interesting that there were not ads on TV

tonite using the word Chantix but I know that was the drug they were

suggesting smokers call a certain number. If I could find my started

box, I'd be back on it

>

> http://www.nytimes.com/2008/01/14/health/14pain.html?

> ex=1357966800 & en=20865e4d0f0b61d9 & ei=5088 & partner=rssnyt & emc=rss

>

> Y'all, we need to write into this editor...

> --Suzanne

---------------------------------

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

I wrote to the author. Couldnt find the editor link either. What

annoyed me is that if you are going to present an argument on its

validity, shouldnt you talk to the people that know it best? The

people who actually live with it??

But no. He just talked to quacks. I shouldnt expect any better from

the New York Times.

--Suzanne

>

> I'll read it later. I took a quick look at it this morning. Based

on some comments about this and the few words I read I am pretty

sure I'll get mad at the writer. How can anyone doubt this disease?

She doesn't know what she is talking about!

> --

>

>

>

>

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with

Yahoo! Search.

>

>

[Guest guest]

,

if the author really does not believe that fibromyalgia is a real

syndrome then he will probably say that you received social security

disability because of the other medical problems you had. I wonder how

many social security disabiliy cases are actually approved JUST on the

diagnosis of fibromayglia alone?

N.

[Guest guest]

Here is a link to the article:

http://www.nytimes.com/2008/01/14/health/14pain.html

lisa n.

[Guest guest]

I could not find a direct address for the health editor of the New

York Times but here is some submission information for letters to the

editor:

Send a letter to the editor by e-mailing letters@... or faxing

(212)556-3622.

You may also mail your letter to:

Letters to the Editor

The New York Times

620 Eighth Avenue

New York, NY 10018

[Guest guest]

You can also reach the author by clicking on his byline (which the NY

Times website says that mail may be delayed) or you can go to his

website:

http://www.alexberenson.com/index.html

and his email address from there is:

alexberenson@...

[Guest guest]

>

> ,

>

> if the author really does not believe that fibromyalgia is a real

> syndrome then he will probably say that you received social security

> disability because of the other medical problems you had. I wonder

how

> many social security disabiliy cases are actually approved JUST on

the

> diagnosis of fibromayglia alone?

>

> N.

>

Well, if he wants to think that, I really don't care, but the New York

Times is not the paper it used to be and half of what is written in it

is not of the quality it was 40 years ago. But at least I put my two

cents in -- perhaps I should not have mentioned the other problems,

but they all help make the fibro worse. And not only that, I have had

two different places run enough tests that do say I have fibro. But

what amazes me is that I am not still sitting here fighting Social

Security the way most people have --- 2,3 times before they finally

say " Ok, that person was presistent enough, we will let them have the

money that is really their's anyway! "

But with the Times -- the old saying " you can fool half the people

half the time ..... " don't remember quite how that ends, but I think

you all get the message! Just too bad the AMA would not be more

verbal in speaking out about it --- but fibro has been in the PDA (the

doctor's diagnostic tool) since 1992, if I am not mistaken. Of

course, that doesn't mean they all believe it! And if were not

a " real " disorder, why did Pfizer spend so M U C H researching the

drug to get it approved???? It had to have been in the pipeline at

least 4 to 5 years. (unless it was out there under another name and

some docs found out that it was very effective with their fibro

patients. That was what happened with my very favorite medicine ---

Duract, which suddenly showed signs of helping dental patients but the

dentists either didn't read the warnings or patients took it too often

and it got jerked off the market by the company voluntarily!)

[Guest guest]

The article is fair in that it presents a balanced view of how much benefit you

are likely to get from Lyrica.

The rest of the article is identical to every other article out there on ADHD,

ASpergers, MS in its heyday.

Look a varitety of tests will eventually be developed and once that happens the

discussions with end.

Think about all the illnesses that 50 years ago we could not test for, they were

still real, this is no different, its in your head until such time as a Dr can

prove " scientifically " otherwise.

Me I want a pain measuring test so that when I say 7/10 pain they get an

electric shock at that voltage.

The best thing the author can do right now is walk a mile in my shoes for a day

then tell me it's in my head.

Re: Article: Is Fibro Real? Write to the editor!

Here is a link to the article:

http://www.nytimes.com/2008/01/14/health/14pain.html

lisa n.

1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr.

Some treatments are dangerous when given along with other meds as well as to

certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be

afraid to ask for help. It is the first step to trying to make that situation

better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the

same time when it comes to flares and b/c of that potentially take something

another member says the wrong way. And that includes the things that one member

may find funny (even if it's laughing at fibro itself) even though we who deal

with illness whether one such as fibro or multiple illnesses try to keep a sense

of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let

us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

You know, right now I am working with an atty on the reconsideration

of my SSI disability because my doctor feels that with my allergies

and asthma as uncontrolled as they are, " real " work is unfeasible.

Add in that I now flare with mono at the drop of a hat and may have

fibro? Plus T2 diabetes? I think we are closer to winning. Because I

now also have a dx of depression from a neuro. I know that I could

not work a 40 hr a week job. It takes everything I have to get my

kids off to school. Stuff is spread out thru the day that used to

take me a few hours to do. I have to rest a lot. What employer would

allow that????

Darlene

> >

> > ,

> >

> > if the author really does not believe that fibromyalgia is a real

> > syndrome then he will probably say that you received social

security

> > disability because of the other medical problems you had. I

wonder

> how

> > many social security disabiliy cases are actually approved JUST

on

> the

> > diagnosis of fibromayglia alone?

> >

> > N.

> >

> Well, if he wants to think that, I really don't care, but the New

York

> Times is not the paper it used to be and half of what is written in

it

> is not of the quality it was 40 years ago. But at least I put my

two

> cents in -- perhaps I should not have mentioned the other problems,

> but they all help make the fibro worse. And not only that, I have

had

> two different places run enough tests that do say I have fibro.

But

> what amazes me is that I am not still sitting here fighting Social

> Security the way most people have --- 2,3 times before they finally

> say " Ok, that person was presistent enough, we will let them have

the

> money that is really their's anyway! "

> But with the Times -- the old saying " you can fool half the people

> half the time ..... " don't remember quite how that ends, but I

think

> you all get the message! Just too bad the AMA would not be more

> verbal in speaking out about it --- but fibro has been in the PDA

(the

> doctor's diagnostic tool) since 1992, if I am not mistaken. Of

> course, that doesn't mean they all believe it! And if were not

> a " real " disorder, why did Pfizer spend so M U C H researching the

> drug to get it approved???? It had to have been in the pipeline at

> least 4 to 5 years. (unless it was out there under another name

and

> some docs found out that it was very effective with their fibro

> patients. That was what happened with my very favorite medicine ---

> Duract, which suddenly showed signs of helping dental patients but

the

> dentists either didn't read the warnings or patients took it too

often

> and it got jerked off the market by the company voluntarily!)

>

>

>

>