by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate
An article, suggesting that fibromyalgia is not real, has appeared in the New York Times in the last few days, has certainly opened a can of worms among the FM community. The story, written by Alex Berenson and called ‘Drug Approved. Is Disease Real?’ refers to the approval of Pfizer’s Lyrica as the first FDA recognised fibromyalgia drug and suggests the pain we feel is not caused by a disease.
Everyone but everyone is getting hot under the collar about these suggestions, so why shouldn’t I? I have sent my comments to the Editor of the New York Times on our behalf but this is not quite as good as some comments I have read so far. But then I am not an MD who has been working in rheumatology and with fibromyalgia since the 1980s and possibly before. Anyway I thought we were all suffering from a syndrome not a disease – that is as it maybe – all I know is I am sick of the pain, I am NOT imagining this and I have been diagnosed.
The article quoting various sources suggests that fibromyalgia does not exist and suggests FM is a physical response to depression, anxiety, stress and social anxiety. Just to put the cat among the pigeons one MD is quoted as saying the ‘disease does not exist’ and suggests that those who take the new drug from Pfizer (Lyrica) and other drugs do not need the medication. Wow…
Dr Rodger Murphee, a well known Internet authority on fibromyalgia, in his email newsletter concerning the controversy refers to the article’s comments that the
worldwide sales of Lyrica reached $1.8 billion in 2007, up 50 percent from 2006. It is believed in 2008 this will rise an additional 30 percent helped by advertising. It is claimed Pfizer spent $46 million on advertising Lyrica in nine months in 2007.
Dr. Murphee suggests, “Sadly, The New York Times and other print media have elected to take a different slant. Instead of helping dispel the myth that those with fibromyalgia are crazy, lazy, or depressed, they have elected to focus on the minority of doctors who think fibromyalgia is not real. I encourage you to write The New York Times and let them know that fibromyalgia is real and is only made worse by arrogant doctors who help perpetuate the idea that the syndrome is psychosomatic in nature.”
He also states that Lyrica does not suit everyone and there can be side effects. So yes, please everyone with fibromyalgia email the New York Times. No excuses please. The address and link to the article are shown below.
To read the article link to http://www.nytimes.com/2008/01/14/health/14pain.html
To send your feed back on health try http://www.nytimes.com/gst/emailus.html
To add to those comments a Canadian physiotherapist, Iris Wevermann RPT, sent a copy of this letter with the comment “I love it!” This apparently appeared in the New York Times following the controversial article. Co-written by a well known FM authority this comes from Robert Bennett MD, FRCP, FACP, Professor of Medicine and Nursing and Kim Dupree Jones PhD, FNP Associate Professor of Nursing.
“Yesterday’s New York Times article, “Drug Approved. Is Disease Real?” has created quite a stir with both patients whose lives are impacted by fibromyalgia, and the health care community who must diagnose and treat this common disorder.
Here at Oregon Health & Science University (OHSU) we have a quarter century of experience in researching and treating fibromyalgia. Yesterday’s article was a poorly informed opinion piece that reminded us of the articles when we and other researchers first started on the quest to understand this disorder in the 1980s. It, unfortunately, ignored much of the scientific progress that has resulted from this research and the current widespread acceptance of fibromyalgia as a common, well-defined chronic pain disorder.
For instance fibromyalgia is recognized as a diagnosable disorder by the National Institutes of Health, the American Medical Association, the American College of Rheumatology and the Social Security Administration. The American Boards of Internal Medicine has fibromyalgia on the curriculum for physicians seeking Board Certification.
Epidemiological studies worldwide provide a similar fibromyalgia prevalence of 2-7%, some 10 million people in the US suffer the debilitating effects of fibromyalgia. Over 4,000 scientific and clinical papers have been published on this topic since 1980.
The sub-title “some doctors dispute the existence of a pain” is especially duplicitous. One does not have to be a doctor to know that pain is “real”, even if it doesn’t show up in an imaging study or blood test. Pain is always a subjective sensation, whatever its cause. Do those doctors who question the reality of pain without a diagnostic test also dismiss the reality of headaches or menstrual cramps?
There is now undisputable scientific evidence that fibromyalgia patients have a functional disorder of their central nervous system in which pain and other sensations are amplified before reaching the conscious areas of the brain. The quoted opinion that fibromyalgia patients’ problem is “an inability to adapt to the vicissitudes of life”, is a generalization that has no scientific basis. All chronic pain disorders take a psychological toll as well as a physical one; those who adapt well fare better in life, but still have pain.
Just like diabetes and high blood pressure there is no cure for fibromyalgia at this time, but there are some newer treatments, such as Lyrica, Cymbalta and milnacipran, that provide scientifically validated improvements in pain and other symptoms. Castigating the pharmaceutical companies who have spent millions in developing these drugs, because they “hope to make a profit”, is naïve and disingenuous.
The symptoms of fibromyalgia are common and real—and it is for this very reason that information to the public should be offering hope, not doubts and questions.
An email to me from Dominie Bush (www.fms-help.com)who is responsible for a very comprehensive fibromyalgia website and newsletters, reported a comment from one of her readers on the New York Times article. This referred to the AOL news site inviting people to vote on this issue.
“Just got this from a reader! Click on the link and VOTE on “IS FIBROMYALGIA REAL?” – Dominie
The reader said just passing this along and wondering when they are gonna find something to help with this horrible thing called fibromyalgia. These people make me sick. What did thousands of people say? Let’s all say we have the same thing and invent something. Makes me so mad that no one listens. The only people that understand are the people living with this.”
The AOL News website invited readers to consider if they believe fibromyalgia exists by answering, ‘yes’, ‘no’ or ‘I am not sure’. When I voted along with 10,449 others, the polls showed a majority of those voting confirmed that FM does it exist. The poll indicated 57% – 41,039 – said yes; 24% – 17,304 – said no; and 19% – 14,093 – said they were not sure.
The poll also revealed 58,017 – 85% confirmed they knew someone who had been diagnosed with FM and just 15% – 68,467 said they did not know anyone with fibromyalgia. That says quite a lot for awareness!
Going back to the article in the Times by Alex Berenson it is reported that the vice president of Pfizer, a psychiatrist Dr. Steve Romano said it was expected that Lyrica would be prescribed by doctors a neurologists. The Doctor suggests if medications are well tolerated this dispels reluctance on the part of the prescriber.
He suggests that the new drugs from Lilly and Forest that are being considered for fibromyalgia were developed as antidepressants. Both drugs work by increasing the levels of serotonin and norepinephrine, brain transmitters that affect mood. Cymbalta from Lilly is currently available in the US but milnacipran is not available but can be purchased in other countries.
Alex Berenson writes that the manufacturers of Cymbalta claim it is effective with fibromyalgia pain although it is an antidepressant. Dr Amy Chappell at Lilly says that FM patients report pain relief even if they are not depressed.
Dr. Chappell suggests the effectiveness of all three drugs – Lyrica, Cymbalta and Milnacipran are all similar and it is thought that some of the drugs may be used as a combination.
As a passing thought among all this controversy, it has been pointed out that there is no proven prevention for this disorder. However, over the years, the treatment and management of the disease has improved.
As for my six pennyworths I wrote to the New York Times and said fibromyalgia stole my life when I would never walk again. It took a year to be diagnosed – privately I might add. Since that time I have spent 5 year researching this syndrome and there is no doubt IT IS REAL. Stress and trauma might be triggers but brain imagining has proved our brains are ‘wired differently’ and it is in the genes. That is REAL.
When people say to me “Fibro what?” I could scream. The problem is lack of awareness. Thanks to the New York Times for highlighting the discussions and problems surrounding this invisible disability (we look so well) and I was always taught as a news reporter that any publicity (good or bad) is good publicity. So do not despair all you fibromites, we are raising awareness albeit there is a difference of opinion. At least people are now reading about fibromyalgia.
We KNOW what it is like to suffer with fibromyalgia, don’t we? I am writing a self-help book on fibromyalgia. Would I waste my time if I thought FM was not REAL? The answer is NO. What we need is for some celebrities to ‘come out’ and admit they have fibromyalgia! The publicity would help raise awareness. Why isn’t Oprah in this debate? Please write to me. I would love to hear your views about real fibromyalgia for the book. firstname.lastname@example.org