Another controversial and recent AP article on fibromyalgia (FM) and the FDA-approved drugs hit the news. And here we go again! Should we ignore it, or must we respond? My take is that whether you are a fan of the pharmaceutical companies or not, you need to be aware of the hidden agenda behind such articles. They seem to be primarily targeting the valuable work that FM researchers, physicians, and many patient advocacy organizations around the country have accomplished in the last decade by undermining and destroying these advancements, which have proven quite beneficial for the patient community.
Do the recent FDA-approved drugs help every patient with FM? The answer is no! But it is helping some. Are they curing FM patients? The answer again is no! But for many individuals, quality of life has improved. In addition, what these reporters fail to report is that these medicines were being prescribed "off label" anyway to thousands of FM patients. The pharma companies were already making money.
I should point out that this reporter also failed to note that there are many other drugs that FM patients take because of the illnesses or other co-morbidities that are acompany FM. I could probably list them from A to Z. Are these pharmaceutical companies also exploiting the FM patient community?
Unless FM patients go totally holistic and take natural supplements (the ones without FDA approval), chances are they will be taking a medically prescribed drug. The vitamin and supplement markets are also a huge cash machine, which FM patients support through their purchases. I must point out that all of the neuroendocrineimmune disorders (NEIDs) P.A.N.D.O.R.A. embraces are part of this cash machine too: CFS/ME, CLD, GWS, and EI/MCS.
There is an inherent benefit if the medicines highlighted in the article are under FDA-approval guidelines. The FDA requires a track record and a paper trail to be kept. Scientific research studies have to be conducted and ongoing guidelines must be met. Some may say that the approval for these drugs were on the "fast track." (Yes, perhaps we should question FDA guidelines, but cancer patients do not go through such a huge scrutiny, and although I want safety and health concerns be in place, we also need choices. Discussion of this issue will be a topic for another article.)
By giving a voice to one or two egotistical physicians who harbor a misguided disdain for the pharmaceutical companies as well as for patients diagnosed with FM, is the media doing a public service? I say no! If media outlets are supposed to be the watch dogs for the "little guy," they are failing miserably at this task. All they are doing is subjecting the FM patient to another emotional beating by shortsighted reporting.
In the article in question, the writer significantly ignores the feedback of our patient community. The physicians who are being highlighted are individuals who have not contributed in recent years to worthwhile scientific research on FM. Do they think that they are the only ones who are "expressing the truth" on issues that affect FM patients? Who released our rights? What scientific credentials do they hold that are more fundamentally important than those, for example, of Dr. Steven Croft, a caring, knowledgeable physician/clinical researcher in South Florida, who has dedicated his whole medical career to treat and care for FM patients? Or of Dr. Robert Bennett in Oregon; Dr. Benjamin Natelson in New York; Dr. Lucinda Bateman in Utah; Dr. Phillipe Saxe in Florida? Dr. Roland Staud in Florida? and the list goes on.
Is the doctor quoted in this article (and others in previous controversial articles) mightier than the physicians and researchers who truly are in the trenches practicing medicine with potential treatments that are beneficial and comforting to FM patients? What happened to doing no harm? And why should their point of view be imposed across the board, without patient input or feedback? A battle is being orchestrated and we, the patients, are left sitting on the sidelines.
I should point out that the doctor pictured in the article - Dr. Frederick Wolfe, was among the scientific researchers that developed the fibromyalgia criteria after considerable research in partnership with Dr. Robert Bennett and Dr. Mohamad B. Yunus decades ago. While these two researchers have gone on to expand their FM research, Dr. Wolfe is stuck in a time warp. He has since then taken a complete 360 degree turn on the issue and has blatantly ignored the newest research findings on FM in the areas of virology, brain imaging, and neuroendocrineimmune theories that are confirming the pathology of this illness and how it overlaps with CFS/ME, GWI, CLD, EI/MCS and even MS. If I were a "hip hop" young individual with FM, I would probably be prompted to ask him "Dude, what's up with you? Dude, who gave you my power?"
I read once that Dr. Wolfe's concerns are about the fact that doctors are enabling a large number of FM patients to be labeled with an illness that "does not exist," and, in the process, they are given a death sentence. His views are that FM patients are not empowered to get better. "Dude, do I sound like an un-empowered helpless FM patient?" I may have certain disabilities, but FM does not define me.
As a veteran FM patient, I also know that for the most part FM is a secondary illness and is not the main reason why I have serious health challenges. But when you combine FM with other associated illnesses, FM plays havoc in a patient's body systems. And in too many cases can be can be life-threatening. It is not what you know that will hurt you, but the lack thereof. FM research must continue, no matter how many naysayers are trying to obstruct it.
It saddens me to realize that in the 21st century, in a country that allegedly excels in medical and scientific technology, vision, innovation, and invention, there are physicians who still question whether FM exists. They are simply being stuck in outmoded scientific concepts. Why do they find it so difficult to embrace neuroendocrineimmune disorders? These illnesses may not fit in the traditional outdated science model, but they are real! And they are emerging illnesses found worldwide.
The task of a reasonable scientist is to use the newest tools to investigate the scientific unknown. Mathematical theories with the aid of computer science, brain imaging, and photography are expanding science to a point of no return. To assume that American scientists cannot break through FM is to say that our scientific community lacks motivation, resources, and innovation. We are Americans! We placed a man on the moon and are traveling to distant galaxies, and yet we cannot tackle this task? "Dude, what gives?"
Neuroendocrineimmune disorders are affecting a large population, translating to an estimated economic impact of billions and billions of dollars annually in our national economy. Do the math. If the estimate that 20 million Americans are stricken with NEIDS is multiplied by the CDC's published amount of $20,000 per individual for productivity losses in one given year, what do we get? The amount is staggering! It is the size of several large state budgets.
The time to respond is now! The time for a health revolution within our community is now. Join this "Dude."
To be continued...
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