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Controversial article receives International attention

Posted Feb 18 2009 12:01pm

I received this email from a journalist in South Africa. The “murky ailment” guy caused international chaos among the fibromyalgia community. See the article, Fibromyalgia Pain Description at the Bella Online site to find out the details.
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Hi Veronica,

Could you let me know the URL of the original article? As a journalist
myself, I would like to judge this for myself, then write to them.

Regards,
Chris in South Africa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi Veronica,

I’ve read the article as well as the NFA response. I’ll try and scare up
some time and energy, and respond to this.

Chris
P.S. All the to-ing and fro-ing about the pharmaceutical companies hardly
has relevance for me in SA, but their poorly-written article does!
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Here’s my reply:

Hi Chris,

I’d like to call it irresponsible journalism! I don’t necessarily disagree with the idea of money-hungry drug companies. I have been treated for years with medication on the $4 drug list and generic list for years. The doctor that I had several years ago did a brain study of fibro patients, and he discovered that the brain chemical that is affecting FM patients is dopamine. When he presented his reseach to the powers that be, they rejected it. His comment to me alluded to the drug companies “recouping cost”. Neither of the drugs approved for fibromyalgia targets dopamine nor can you get them in generic. So, I feel that there is some truth to the drug companies capitalizing on others pain. The problem that I had with the article was calling fibromyalgia a “murky ailment”. I receive countless emails from FM patients calling out for help wanting to kill themselves because they have lost hope. 9 times out of 10, the reason: an insensitive doctor has labeled them as depressed and crazy and did not provide any relief. So the only solution that these sufferers have left is to kill themselves to stop the pain. His article can do a great deal of damage to persons who have lost all hope. If he did not have full knowledge of the disease, then he should have kept his mouth shut!

Dr. Patrick Wood, Dr. Andrew Holman, and many others have lab reports, MRI reports and other scientific evidence that fibromyalgia is a reall illness that cause visible changes in the brain. It is now considered a central nervous system disease which is why the drugs approved for FM either target the nerves or the brain. So, Kudos to the drug companies in the sense that they made the disease come to life; that no longer can a physician who doesn’t have a clue how to treat fibromyalgia use the “depressed and crazy” excuse. By the FDA approving medicines for FM, our cries have been heard. So along comes a journalist who has no clue, trying to muffle the cries. Yes, we’re angry about that! So, it was more than being offensive; we was undoing a great deal of hard work done by advocates who have been lobbying for years to have fibromyalgia to be considered as anything but a “murky ailment”.

Veronica
Editor of Fibromyalgia & Chronic Fatigue Syndrome at Bellaonline

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