It's been quite some time since I've been to the board and read and responded. I'm still here, kicking and screaming the whole way. Between this rough road my boyfriend and I are traveling down (confined to our bedroom) with his Dad and his non-supportive mother (soon to be ex-wife after 2 years of separation). My boyfriend's mother doesn't care about my boyfriend's father and could really care less if he was homeless. So, being the kind person I am, I welcomed him into my small apartment to prevent the homeless situation. Times are rough, Fibro is kicking my behind due to the increased pressure and stress of the situation. Again, we Fibromites know how to put ourselves all out on the line and sacrifice our sanity and our tolerable pain level days to help people. Oh how the giving heart can mend, but also open up new wounds. Well, I still think about all of my family in this condition, so I wanted to make sure that I forwarded this to you from the Fibromyalgia Association. I get e-mails from them a lot, but this one was particularly striking to me. I don't get the NY Times, nor would I think to ask about it. Since Fibro is still on the back burner for most, it's especially unfortunate for someone to come out of the blue and publish a front page article that proposes that WE are ALL FAKING THIS! Not only are we all FAKERS, but this author accuses pharmaceutical companies of making up this disease to make money. How rude, among many other words. So, from the editor of the NFA Newsletter, I bring you this e-mail. Together our opinion matters more.

Here's the link to the scientific evidence that is referenced in the e-mail below.

http://www.fmnetnews.com/pages/NewspaperResponse.php

READ ON FOLKS, READ ON. THE MEDICAL PROFESSIONALS THAT RESPONDED TO THE NYTIMES ARTICLE REALLY PRESENT SOME INTERESTING INFORMATION.

Doctors Respond to New York Times Article

Dear KORINNE KNUEBEL,

New York Times writer Alex Berenson bashes pharmaceutical companies on a regular basis. But on January 14, 2008 the Times took his distrust of the drug industry too far with an insane article titled: “Drug Approved. Is Disease Real?” It’s a tale about how Pfizer, Eli Lilly, and Forest Laboratories fabricated fibromyalgia so that they could make a fortune selling their drugs to patients who do not really have a disease at all—just problems adapting to the aches and pains of living!

The article trampled the reputation of fibromyalgia patients, their doctors and scientists in the field. Berenson dredged up antiquated beliefs held by three die-hard doctors who truly believe millions of Americans are faking fibromyalgia. The stale theory that pain was not real unless it could be documented with a blood test or X-ray permeated the article.

In response to Berenson’s front-page feature in the NY Times, Fibromyalgia Network solicited statements from researchers and physicians across the country. Visit our website to read what the experts have to say about fibromyalgia and share their comments with anyone who doubts that your symptoms are real.

As for the editors at the NY Times, do not hesitate to voice your opinion and let them know that they flubbed up by attacking people with fibromyalgia, a real disease. E-mail addresses for the News Department, the Public Editor, and the Managing Editor of the NY Times are given at the end of the web page postings from the experts. Feel free to include in your response a few of the valid points made by the experts and ask in your e-mail that the editors at the NY Times publish a quality article on fibromyalgia, its pain and symptoms you struggle with daily.

If you or someone you know has fibromyalgia, don’t let the NY Times set back the progress made in the field these past 20 years. Read the comments from the experts and let your voice be heard—even if it is a brief complaint.

Kindest regards,

Kristin Thorson, Editor

Fibromyalgia Network

OK, OFF THE SOAP BOX NOW, BACK TO HOMEWORK. I used to be able to keep up with all the new posts, but these days with so many new people, I can't keep up anymore. It's encouraging to see so much interaction....

I wish you all a better day tomorrow than it was today. I'm going into full flare now, just in time for that insurance card to FINALLY arrive in the mail. Although I don't want to be in flare, it's best that I am so I can more accurately describe my symptoms to be treated.

I'm Rachael. I dont think that I've met you yet so Hello. i love that you posted it. If you look at some of our other forums lately you can see how much our little community has reacted to this article. I am definitely going to write to the editor of this Times, I just didn't have the address to do so.

I hope you have a good day and that this flare doesn't last too long. I am in a flare too, so I get it! Hope to talk to you soon and get to know you better!

Gentle hugs and kisses,

Rachael

I've been wondering how you were doing with all of the added stress!! I hate to hear that you're in a full flare, but you are right that it's good to be in one when you see your doc!

Isn't the NY Times crud just enough to make you sick?? I'm working on my letter to them, however, I have been since it was posted on here and we've been fuming ever since. HEY...there's been a few members write to them and get a response...I LOVE IT!! There was a day that I, personally...would just 'let it go'...but after reading all of the letters written from my friends here...I talked myself into sticking up for not just me...BUT US for once and writing to them myself as well. I just keep changing things...over and over again. Not to mention, it's not gonna hurt them to KEEP receiving letters. I mean hey...if they get however many within the first week of the release date...it'll be out of their heads in no time at all. BUT...if the letters KEEP coming in to them...it might cause more of a beef and that's what I WANT!!

Thanks for posting that info. It's nice to know what people are saying out there!

I wish you the best with your doc and family stuff. I know it must be hard! But, I know you...you're a tough gal...so keep your chin up and hey...check in more often if you can. I've missed you!

{{{{Fibro Hugs}}}}

1. Anyone can dig up enough information to make it seem like their viewpoint is justified b/c of "credible" sources. So, the author finds a few people that agree with his opinion and he produces the article like what he is saying and what his "support" is attesting to is the truth? Uh yeah, if I believed that the sky was actually green, I'm sure I could dig up enough resources to justify my thoughts. Unfortunately, this guy has picked the wrong group of folks to pick a fight with and insult....WE are way bigger than the size of his wrist muscle that he used to write this crap.

2. So, the author and his "specialists" think and say that the medical profession precipitated this condition. Well, isn't it ironic I haven't seen a physician consistently in years. Thus, how could I be influenced into feeling this crappy by the medical profession when I don't even go to the doc on a regular basis. It's not like when I do go they are pushing Fibromyalgia down my throat. What makes me ill is the sheer ignorance of this guy. Apparently he doesn't know anyone in our state. Just like all the elected officials that continue to cut funding for nursing home residents, obviously, they haven't a clue as to what they are talking about.

Awwww, Suzie, I've missed everyone as well. With my living room taken over by the "Dad" I can hardly stand to sit here at the computer. It's like those little things that I can't stand, the smacking of the teeth and other odd noises he makes. I JUST CAN'T TAKE MUCH MORE. Yes, full flare, lovely, but I'll make it, it's not like I haven't made it before. Needless to say it's not fun, but hey, it could be worse, right, maybe, ok, maybe not, but at least I know that I'll be alive tomorrow even though I might not feel good. Some people won't make it, I just have to make the best of 2 terrible situations and see where I come out at the end.... Don't stop typing till you send that letter to the NY Times. Why don't they try to help us instead of causing such chaos....