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By: Joni Simpson,Leader,Fort St. John FM Self-Help Group. Response letter to NewYorkTimes Article
Feb 7, 2008

To Whom It may Concern,

I was nothing short of disgusted to read about your article Drug Approved. Is Disease Real? "Drug Approved. Is Disease (FM) Real? "NIT article, Monday Jan. 14/08 How dare you question the validity and existence Of Fibromyalgia, which by the way has been documented in medical journals and medical schools albeit under different names for over 300 years!

I have been totally and painfully disabled from Fibromyalgia since it hit me so hard in October 2005 that I was unable to even get out of bed, walk, use the toilet, feed or dress myself for the first 60 days. This is not something that I would have 'faked' especially considering that I'd never even heard of the disease before. I was an accountant working with numerous clients who had unwaveringly trust in my abilities and capabilities. Once I developed Fibromyalgia I found that my memory, cognitive functions, severe and crippling pain, lack of sleep, crushing fatigue, migraines and other too numerous symptoms affected my work so much that I had to visit the ER at the local hospital many times, finally forcing me to leave my career and go on a disability pension at a huge financial loss. I would MUCH rather have had my own accounting firm, supporting staff and the economy - including my own. How dare you!

Why would anybody work so hard in university to strive day and night to learn a career to the best of her abilities (as shown in my grades, becoming Valedictorian and having top marks in all of my classes) just to trade it in on a meagre pension. Even after over 17 years of living with FM I still can't always dress myself without help, often I'm unable to leave the house for days or weeks at a time due to flared symptoms and the inability to walk or think straight, and most times unable to leave my own bed due to chronic pain and fatigue. I have many days per month where I cannot drive, walk or look after myself - even the basics. It's like waking up one morning and you are all of a sudden dependent on others even just to the do basic necessities of life. Also, I have to take a form of Morphine twice a day (as well as a myriad of other meds to treat my 50-odd symptoms of FM) just to keep the disabling pain down to a point where I have a small semblance of quality of life. How dare you!

How dare you for demeaning a disease that I, nor the millions of sufferers around the world, DID NOT ask for? I am the local FM Self-Help group leader who has counselled, advised, comforted and advocated for the rights of over 3000 FM sufferers both face to face and over the internet in FM chat rooms. How dare you demean a disease that our youngest member has to face every day as he tries to keep up in school and day-to-day life all the while living with severe pain - and he's only eight years old. How dare you!

I truly believe that a full apology is in order, not only from your so-called doctors but also your paper and its editors . And, while you are trying to repair the damage you've done to the validity of Fibromyalgia, why don't you also ask some REAL professionals in the area like Dr. Jon Russell (Oregon) or any of the other numerous worldwide Fibromyalgia specialists who have been researching FM and have found actual 'tangible' tests that DO prove that Fibromyalgia in not only just 'Real' but prevalent the world over facing all walks of life, financial, emotional and ethnic backgrounds. Is it not customary for your 'professional' paper to show both sides of an argument in a story filled with facts and let the reader make up their minds as to what to believe. That was always my idea of professional journalism. How dare you!

Nothing good can come from one-sided stories, especially when they are not based on the facts whatsoever just the ramblings of two individuals who obviously don't know what they're talking about or even care. How dare you?

If it were only possible, I'd like to see your 'so-called' specialists interviewed in your article spend even one hour in my body and then let them say if FM is real or not. I know for a fact that they would be never be more thankful to have survived a mere 60 minutes period living in this physical and cognitive hell. How dare you?

I anxiously await your publication's response and explanation to the kind of negative, one-sided and untrue journalism that your paper and its writers and editors exhibited Monday January 14, 2008. How dare you?!?.

Sincerely, and actively living with a very REAL Fibromyalgia since October 17, 1905,
Joni Simpson
250.785.5111
Fort St. John, BC Canada