# Media Alert about controversial media coverage on Fibromyalgia and Irritable Bowel Syndrome



## Jeffrey Roberts (Apr 15, 1987)

We received this Media Alert from the American Pain Foundation


> Dear APF Advocates,This week, there has been much controversial media coverage on fibromyalgia and chronic pain. The New York Times published an article, Drug Approved. Is Disease Real.., which questioned the validity of fibromyalgia and chronic pain itself. The article suggested that the pain of fibromyalgia is a case of people who "obsess over aches that other people simply tolerate," and that the pain is just a "physical response to stress, depression, and economic and social anxiety." This is an extreme and harmful mischaracterization of the reality of pain.See Background Information and Additional Media Coverage..The public and the media need to hear from you! whether you are a person with pain or someone who cares for or treats people with pain. APF is dedicated to raising awareness of fibromyalgia and other painful conditions and the fact that people in pain have a right to timely, appropriate pain care.Please Take Action NOW: Write a Letter to the Editor of The New York Times..Thank you for advocating for people with pain. Together, we will make a difference!Best regards,The American Pain Foundation


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## M&M (Jan 20, 2002)

I read that article in the New York Times - it was disgusting!Thanks for posting this alert! I will see about getting a form letter written so it will be easier for us to send a letter.


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## M&M (Jan 20, 2002)

Here is an example of a letter you could send to the Editor.


> To the Editor:Your article regarding Fibromyalgia, claiming it is not real, is full of inaccuracies. Fibromyalgia is, in fact, a very real illness, and it is recognized by the American Medical Association, the National Institutes of Health, and the American College of Rheumatology.The pain of the illness is real, whether or not it shows up on currently available tests. Suggesting that it is simply an obsession over aches and pains other people tolerate is insulting and harmful. Most Fibromyalgia patients were healthy before developing the illness. And these patients fully understand that life with Fibromyalgia is quite different, and brings with it much more pain, than life without Fibromyalgia; and they know that from personal experience.Chronic pain is a national health care crisis. Pain is the number one reason people seek medical care. Pain weakens the immune system and slows recovery from disease or injury. Untreated, or under treated, chronic pain diminishes quality of life and adversely affects every aspect of a patient's life. It also costs our economy $100 billion in medical costs and lost workdays. Most notably, when pain is treated properly, many people can resume their normal lives. To negate or doubt the existence of this illness is to blindly ignore all the available evidence from reputable resources who have researched Fibromyalgia thoroughly. Should you choose to research the illness more thoroughly, you may find the American Pain Foundation's website very helpful:http://www.painfoundation.org/


You can take out any of the included points, and substitute them with any of the following talking points (taken from the American Pain Foundation's website):


> *About Fibromyalgia:*• Fibromyalgia is a complex chronic pain illness that is recognized by the AmericanMedical Association, the National Institutes of Health, and the American College ofRheumatology.• FM experts estimate that about 10 million Americans and approximately 3-6% of thepopulation worldwide suffer with FM.• While it is most common in women, the illness strikes men, women, and children of allages and ethnic backgrounds.• For those with severe symptoms, FM can be extremely debilitating and interfere witheven routine daily activities.• Fibromyalgia is an example of a complicated medical issue that is difficult to diagnoseand treat, leading to further stigma for people in pain.*Targeted Points:*• Pain is real regardless of whether it shows up on a test• To suggest that the pain of fibromyalgia is a case of people who "obsess over aches thatother people simply tolerate," and that the pain is just a "physical response to stress,depression, and economic and social anxiety," is an extreme and harmfulmischaracterization of the reality of pain.*General Pain Talking Points:*• Pain is a national healthcare crisis. It is our Nation's hidden epidemic.• More than 76 million Americans suffer from chronic pain, and another 25 million sufferfrom acute pain as a result of injuries or surgery.• Pain is the number one reason people seek medical care.• Undertreated pain has serious physiological, psychological, and social consequences.• Pain weakens the immune system and slows recovery from disease or injury.• Uncontrolled pain diminishes quality of life. It adversely impacts almost every aspect of aperson's life including sleep, work, and social and sexual relations.• Pain costs our economy $100 billion in medical costs and lost workdays.• Undertreated pain drives up the cost of healthcare, because it extends lengths of stay inhospitals, increases emergency room visits, and leads to unplanned clinic visits.• When pain is treated properly, many people can resume their lives.• Treatments are available today to manage or greatly ease most pain, so people with painshould not suffer needlessly.• People often mistakenly believe that pain is something they "just have to live with." Theyare often made to feel that the pain is "just in their heads."• Pain carries a stigma. Many people with pain are fearful or embarrassed to let theirfamilies, friends, and even their healthcare professionals know they are in pain-becausethey don't want to appear weak, or be considered a bad patient.• The Bottom Line: People in pain have a right to timely, appropriate pain care.Founded in 1997, the American Pain Foundation is an independent nonprofit 501©3organization serving people with pain through information, advocacy, and support. Our missionis to improve the quality of life of people with pain by raising public awareness, providingpractical information, promoting research, and advocating to remove barriers and increase accessto effective pain management.Please visit the APF web site at www.painfoundation.org


To send the letter to the Editor, go here, and enter all the information they ask for:https://secure2.convio.net/apf/site/Advocac...gename=homepageThis is patient advocacy from your bed!


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## eric (Jul 8, 1999)

IFFGD's response:"Fibromyalgia and irritable bowel syndrome: How real must they be?(January 26, 2008) Nearly two weeks ago the New York Times published a front page story about a new drug approval for the treatment of fibromyalgia that questioned the validity of functional disorders and implied that both fibromyalgia and irritable bowel syndrome (IBS) are not "real." In response, IFFGD joined a group of internationally recognized clinicians and scientists in sending a Letter to the Editor at the New York Times. The letter is intended to provide perspective and balance to the article, which was entitled "Drug Approved. Is Disease Real?" We believe it to be a disservice to leave the millions of sufferers with fibromyalgia and IBS with the thought that their medical disorder is not legitimate. The newspaper has not published our response. We present it to you here."http://www.aboutibs.org/site/news-events/n...commentary#Real


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