National Fibromyalgia Association's Response to AP Article on Drug Companies & Fibromyalgia
The inaccuracies of the recent AP report, Drugmakers push boosts 'murky' illness, go even beyond what I pointed out in a recent blog. Here's the response from Lynne Matallana, president of the National Fibromyalgia Association:
"To the editors:"The recent Associated Press story on fibromyalgia hardly qualifies as news; it merely regurgitates the same arguments that have been published in the past and offers the opinions of the same two men who have built careers out of drawing attention away from the hundreds of scientists who continue to make amazing scientific strides toward understanding the underlying cause(s) and pathophysiology of what fibromyalgia patients experience. By perpetuating this message, the article implies that it is more acceptable to debate names or labels for this "set of symptoms" and to point fingers at the usual "villains" (i.e.: pharma and the nonprofits who accept money from them), than to focus on the millions of desperate patients who deserve to have a voice in the discussion. The fact is that credible medical institutions and organizations recognize fibromyalgia as a life-altering disease; the fact is that patients who suffer with FM depend on the medical system (including pharmaceutical companies) to help them inform the public that this is a very real illness and that they need treatments, including pharmaceutical agents, to help them get through each day-and to look forward to some sort of quality of life in the future.
"This article misinforms readers in a way that undermines and victimizes innocent people. By telling only selective parts of the story the author is perpetuating misperceptions and making it difficult, if not impossible, for readers to grasp what is truly important: that we need to stop debating and pointing fingers and start asking why it is perceived as acceptable to stigmatize a patient population just because medical research hasn't yet provided us with all the information needed to understand that particular illness. Every illness seems to go through a stage of having to prove its legitimacy, but why should the patients be suspect during that phase of research?
"Why would AP print information that is simply not true-i.e.: people with fibromyalgia are "more likely to have a history of mental illness and are economically disadvantaged?" That is totally false, as is the writer's statement that the National Fibromyalgia Research Association received pharma money to fund Dr. Clauw's functional MRI study. The money for all of the NFRA's funded research came from the founder (the husband of a fibromyalgia patient), general donations, and revenue generated from a nonprofit bingo game. (Yes, the FM community has had to rely on bingo games to fund our research!)
"How can we allow the system to fail millions of people whose only 'fault' is to have developed a devastating illness? Along with the rest of the fibromyalgia patient community, I look forward to the day when society (including the medical community, the media, and our government agencies) accepts the responsibility of treating fibromyalgia patients like any other group of chronically ill patients; when it is a given that fibromyalgia will be further studied, that treatments will be developed and made accessible to patients, that the media presents the facts rather than perpetuating threadbare controversies.
"Now that would be news worth printing.
"Sincerely,
Lynne Matallana
President, National Fibromyalgia Association"
Comments
Here, here! I had not heard of the article mentioned but I am tired of the media not reporting the facts of this illness (and probably others) or reporting science issues properly in general.
It is sad to see the journalistic standards in this country fall so far so fast as they have in the last 20 years. The U.S. was once considered a leader in journalistic integrity and accuracy. I am only 45 and I remember real journalism and witnessed it’s takeover by pseudo-news reporting.
I’ve had fibromyalgia for about 10 years and most of that time it was fairly stable (and by the way I have a college degree and was in the middle class before this illness forced me on disability. Since July I have experienced what I thought was a flair up but it has not subsided. I eat properly, exercise, keep myself mentally active and as informed as possible about this insidious illness. I’m doing all I know how to keep my head above water until a real treatment and hopefully a cure can be found.
The AP reporter needs a lesson in fact reporting which is what journalism is supposed to be about.
Wouldn’t it be great if the AP reporter could experience what we do for a week?
I to am a college grad who had a job I loved. Now I am on disability.
Thank you Lynne! As an RN working and loving my job, it was a terrific blow to me when I became disabled in 1992. I cried for hours over the loss of my career. Back then, most people had not even heard of CFIDS/FMS and I certainly did not look sick, so I am sure that many folks thought that I was faking. Even the doctor that I was working for thought I was just “depressed”!! It is one thing to quit a job, but something totally different to have an illness rob you of a fulfilling career. I did finally find a doctor who believed in CFIDS/FMS and treated me appropriately, but I still live with severe pain every single day of my life. Also, my short term memory is totally shot. I am steadily getting worse and now also have idiopathic(unknown cause)heart failure. You should read what Dr. Paul Cheney, a CFIDS researcher and former practicing physician, has to say about CFIDS and heart failure. My husband is a tremendous help around the house, but most days I do not have the energy to do any household chores at all, therefore, our house is a mess, which makes me feel very guilty (and round and round it goes)! I am housebound for weeks at a time. It takes so much energy to bathe, wash my hair and fix it and get dressed that by the time I do all that I am totally exhausted! So I don’t get out a lot to say the least. Yes, I wish many journalists and MDs could suffer our illnesses for one month……then, I would bet, they would be singing a different tune! Good luck to all.
PS: I forgot to mention the financial aspects of disability! I went from a high-paying career with wonderful health insurance to having to live on SS Disability and Medicare for insurance and RXs, and that is a crime in and of itself! Medicare, as you may or may not know, pays very little for health care, and many MDs are declining to accept Medicare patients in their practice, which limits who we can see. The health care industry in this country is in a terrible plight and I do not know what the answer is, but everyone who is a US citizen should have access to every kind of medical care and prescriptions that are needed to treat their illnesses/conditions!