Re: Sad State of Affairs for Fibro Sufferers in National Newspaper Reports

[Guest guest]

I think these writers' animosity is directed at the big pharmaceutical

companies and the medical community in general. They see the pharmaceutical

companies, doctors and hospitals in cahoots with one another in an effort to

strip as much money from the population and insurance companies as

possible. They *THINK* they're doing a public service with such articles as

these which lambast the 'evil medical monster', however, they don't have a

clue about the enduring pain that people suffer with each day.

If there were no sales potential from thousands and THOUSANDS of pain

sufferers, I guarantee you there would be no such thing as Lyrica today.

Sheer demand is driving the medical community to begin to supply what we

want. Greed may initially drive the medical community to providing the

services and medication we want, BUT, that will lead to all sorts of people

jumping on the bandwagon for research money for more drugs and treatment,

and eventually will lead to better and better medications, and perhaps even

a cure.

But, by then they may not want to let go of such a cash cow, and prefer not

to pursue a cure, but keep " inventing " meds and treatments. Why kill the

goose that laid the golden egg? Many feel that this is what has been done

with diabetes, and some will go so far as to say the same thing about some

forms of cancer.

At any rate, I've digressed. The original point of my post WAS that these

media writers have no idea that the things they write are so inflammatory to

so many people who suffer. Their critical focus is on the medical

community. It would be nice to see news people who write in an UNBIASED

manner, like was expected back in the day. (Although they probably just

ignored some facts to get their spin on) They're supposed to present the

facts and allow the reader to make their own judgements and conclusions.

However, these days they think the general public is not intelligent enough

to do that, or perhaps just too lazy....and besides, it would make their

articles dull and not sensational enough to sell or watch.

At least we're getting attention, and that's what FM needs. FM is where

mental illness was back in the 50's, 60's and 70's. No medical tests could

confirm any diagnosis, but just look at all the clinics, hospitals, and

medications we have for those illnesses now. Very few if any doctors doubt

the reality of mental diseases now.

The best thing you can do is exactly what you're doing. Get your voice

heard. The more people who object to this type of journalism, the more we

credibility we will gain as a group of real disease sufferers.

Hopping off my soapbox.

Sorry for the lengthy post.

in Louisiana.

Who hasn't slept in 2 nights because of her *imagined* illness.

> After reading the report in the New York Times that has caused such

> an uproar I was curious about other articles in newspapers concerning

> fibromyalgia.

>

> I found one that is very disturbing. A lady at teh Philadelphia

> Inquirer wrote a column about the high cost of drugs. Even though

> most of the article is about STEROID use! her first sentence

> was: " Time for another episode of the Wonderful World of Drugs. The

> disease fibromyalgia might not be real, but the drug used to treat

> it, Lyrica - a bewitching name for a painkiller - is very much so, a

> whopping $1.8 billion annual success. " The whole article can be seen

> at:

> http://www.philly.com/inquirer/columnists/karen_heller/20080116__

> Heller__They_do_the_drugs__we_pay.html

>

> Then in this online article: Accused of hiding drug dangers again,

> Big Pharma starts 2008 defending itself,By Martha Rosenberg

> Online Journal Contributing Writer, the writer not only states this

> about fibro sufferers " And then there's fibromyalgia, another

> amorphous, no cause/no cure/no clear definition condition that lends

> itself to lucrative direct-to-consumer self-diagnosis. " This whole

> article is at:

> http://onlinejournal.com/artman/publish/article_2864.shtml

>

> Another online article in the Abilene Online Reporter News mirrors

> the New York Times article. You can view the article at:

> http://www.reporternews.com/news/2008/jan/17/the-controversy-over-

> fibromyalgia/

>

> Another article, in the same negative vein, is on the health blog at

> the wall street journal. It can be found at:

> http://blogs.wsj.com/health/2008/01/14/fibromyalgia-pioneer-rethinks-

> disease-as-pfizer/

>

> These are a few recent articles, opinon columns that i found that

> have the same negative tone as the New York Times Article. Please,

> everyone who is outraged and writing the New York Times, take a

> minute to visit these sites also and email the author, leave a

> comment about the column, etc.

>

> The only way to change the opinion of people who are writing columns

> like these are for the people who are actually suffering from this

> condition to speak up! I know that we do not have a lot of control

> over our health when it comes to this disease, but writing emails and

> comments to these authors, trying to enlighten them at least a little

> to the realities of living with this disease is something that we CAN

> do without having to leave our homes!! I was appalled at how many

> newspapers picked up that new york times article and ran it!!! There

> were MANY!! For anyone who has the spirit and energy, add those to

> your list of editors to write and try to at least get the viewpoint

> of the sufferers to their attention.

>

> If anyone is interested I will try to see if I can get together a

> list of the newspapers that ran the New York Times article and post

> it in the files section with the websites.

>

> It is sad that the sufferers of this illness are the ones who are

> going to have to educate the media but that is exactly what is going

> to have to be done!

>

> Okay, off my soapbox

> N.

>

>

>

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