With drug approvals for fibromyalgia came advertisements for drugs and PSAs about the condition itself. Awareness went up. That's good, right? Well ... yes, except that it makes us a higher-profile target.
Just as there are two sides to every coin, increased awareness of fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) has a down side. An example of the down side is an Associated Press (AP) report accusing pharmaceutical companies of "disease mongering" and bringing up the tired old debate about whether FMS is "real."
The AP article says:
"Fibromyalgia draws skepticism for several reasons. The cause is unknown. There are no tests to confirm a diagnosis. Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments."
Let's break it down, point by point:
- The cause is unknown. This is a true but invalid point. We also don't know what causes Alzheimer's disease, lupus, multiple sclerosis (MS), or many other diseases, but I don't see anyone questioning whether those are valid diagnoses.
- There are no tests to confirm a diagnosis. This is only partially true - we do have the tender point test. It's not an objective laboratory test, but it is a test. And again, when you look at other illnesses (especially neurological ones), objective diagnostic tests came well after the diseases were recognized. It can still be tough to get a solid MS diagnosis.
- Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments. Again, true but invalid. The majority of FMS cases are secondary, meaning they're believed to have been caused by another condition or physical trauma. By definition, people with secondary FMS fit the criteria for other ailments.
The AP article also takes issue with the fact that Pfizer (maker of Lyrica) and Eli Lilly (maker of Cymbalta) gave more grant money to FMS research than they did to Alzheimer's and diabetes. To that, I say hooray! Yes, we need research on Alzheimer's and diabetes, but FMS research always has been drastically underfunded - which is why we have so few answers. Without research money, how will we ever discover the cause, develop an objective test, or better define diagnostic criteria?
Don't get me wrong - I don't trust the pharmaceutical companies, and I know they have a lot to gain by publicizing diseases for which they have drugs - the AP points out that both companies spent more on advertising than research grants. But I don't want to get on that soap box right now. I'm too busy writing comments to publications that are running the AP story, letting them know what research shows about the myriad physiological discoveries linked to FMS.
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Pretty weak post. You know, plenty of us with fibromyalgia are intelligent and extremely capable for thinking for ourselves. I like how you omitted a link to the story in the hope that we would settle for your opinions.
http://www.google.com/hostednews/ap/article/ALeqM5jZDQjkt1twJK_3GpRKJUbXZ_-oMwD967HPG81
The article doesn’t accuse pharmaceutical companies of disease-mongering, as you said; Dr. Frederick Wolfe does that. Nor does the AP “(take) issue” with the money spent on FMS research; it merely compares the amount to that spent on better-known illnesses.
To act like this is a personal attack is ludicrous and laughable. But hey – have fun writing your outraged letters to the publications running this story. I’m sure that won’t further damage the credibility of all of us.
Additional points to raise -
Not only is there no objective proof of Dr. Hadler’s assertion, if you check PubMed, Dr. Hadler, who is a leading mind/body advocate, doesn’t even research fibromyalgia or treat patients – however he is financially connected to disability insurance which only pays a total of two years for psychiatric or “stress” disorders instead of a lifetime. Now that’s financial motivation as strong as that of Big Pharma!
It should also be clarified that a tender points exam checks for clinical signs that any doctor on earth can follow and reproduce the exact same results as any other doctors. Tender points are not symptoms where doctors have to rely on patient report.
For those who know their biopsychosocial history it’s ironic that Dr. Clauw who was once adamant that fibromyalgia wasn’t an organic disease has swapped places with Fred Wolfe who now claims all fibromyalgia patients suffer because of psychosocial reasons. Or do they? If a patient has psychosocial issues do they pre-date fibromyalgia? Or are they a normal reaction to having a disease that leaves many in constant pain?
Can such sweeping generalizations actually apply to millions of individuals?
Megan: If you or anyone ele would like to independently verify this AP article by Matt Perrone you can simply google “Drugmaker’s Push Boosts murky ailment.”
Unlike your comment, the news article is not a personal attack on anyone nor should it be construed as one. Pointing out factual errors and/or omissions is legitimate. I would agree that understanding and locating additional information is well within the capabilities of intelligent people.
You are of course as welcome to your opinion as any other patient but you may find people are more apt to listen when their choices aren’t attacked as “ludicrous.”
Kelly, in case you missed it, I provided a link to the article in question in my comment. That way people can read it for themselves, rather than rely on Adrienne’s attempt at analysis.
I’m glad we agree that the AP article is not an attack, but that’s not the point that comes across in this post. Charges that the AP is “accusing pharmaceutical companies of ‘disease mongering’” or that it “takes issue” with funds spent on fibro research are embarrassing and misleading.
By presenting herself as a voice of the fibro/CFS community, Adrienne’s got a responsibility as a leader. Her emotion is what makes some of her posts great, but this was an occasion where she needed to filter out her emotions to present a more effective argument. I certainly hope she does that in the letters she says she’s sending to newspapers across the country.
Megan,
Of course, you have a right to your opinion. You’re right that I should have included a link, which I usually do. I appologize for forgetting it and I’ll add it into the post.
The article isn’t an “attack” on fibromyalgia as much as it has a misinformed slant that could easily lead people to believe that fibromyalgia isn’t real. It’s true that the author doesn’t say himself that big pharma is disease mongering, but the author chose that quote from Dr. Wolfe to make a point. The statistics and comparisons are similarly chosen to make a point. As a journalist, I know the ways that quotes and facts can be presented to lead readers to a certain conclusion without the author having to state an opinion. Journalism classes could pick this one apart for those kinds of techniques.
The hundreds of headlines generated by this AP report say things like, “Fibromyalgia grants raise eyebrows” and “Drug firms under scrutiny for fibromyalgia campaigns.” (You can see a variety of headlines here: Google News results) Those kinds of headlines do us a disservice by putting doubt in people’s minds.
As for the comments I make to newspapers that run these kinds of stories, I generally lay out a list of scientific findings about the condition (neurotransmitter dysfunction, cranial perfusion irregularities, global pain processing abnormalities, HPA axis dysfunction, etc.) and talk about the respected health organizations worldwide that take fibromyalgia seriously. Emotional arguments don’t carry a lot of weight against statements from skeptical doctors.
However, I do have a right to be frustrated by the type of information mismanagment that the AP report spreads. The 3 reasons they give for the skepticism around fibromyalgia are really quite flimsy to anyone who’s educated about medical issues. It’s lazy journalism, and it’s helping spread misconceptions that have caused a lot of hardship to a lot of people.
Megan,
That article is pretty clearly an attack, albeit a thinly veiled one. It has exactly the same tone as articles on the evolution/creation debate, global warming, or health risks of tobacco. By getting a few experts to line up on one side they make it sound like there is a legitimate scientific debate going on, even though there is really a consensus among the vast majority of experts. Even just a few years ago one could be a credible fibromyalgia skeptic, but by now there is so much objective scientific evidence for anyone who cares to look that the remaining skeptics are essentially the same type of dead-enders who keep these other “debates” alive as well. News organizations of course love controversy, and so are all too happy to feed this. Thanks to Adrienne for injecting some actual facts into the discussion.
I just want to thank you Adrienne for you advocacy and passion to move awareness for our illness forward.
I don’t have the energy to pursue this but feel exactly as you do about this article.
Thank you, Adrienne, for addressing this article!
Look what I found! It’s an article that talks about fibromyalgia and actually talks about scientific discoveries instead of re-hashing the same old tired debate:
Finding Effective Treatments for Your Chronic Pain
You know what would be cool? If they sent all us fibromites to some sort of colony (like they did with leprosy back in biblical times) where we lived away from everyone else. That way we could work on our own research & compare notes. We would be away from the nay sayers & wouldn’t even have to acknowledge them! We could care for each other when we were in periods of remission. We could build a town that was fibro-friendly and live in harmony!
(((sigh)))
Fibrotown! I like the sound of that! That would sure take some of the stress away, Dena!
Please read National Fibromyalgia Association President Lynne Matallana’s recent comment on my blog in response to the AP article referring to FM as “murky’ ailment.
http://fibrohaven.wordpress.com/2009/02/13/letter-to-the-ap-from-the-president-of-the-national-fibromyalgia-association/
I love the idea of a Fibrotown. I know that we can help each other that way.
I also appreciate Adrienne’s response which I read at the Washington Post site.
BTW Megan, the link you provided fails to give the entire “piece” as apparently different papers ran with various versions. My local paper The Modesto Bee printed it all, including this final ’statement’,
“MIND OVER MATTER? Patients diagnosed with fibromyalgia are more likely to have a history of mental illness, be overweight and economically disadvantaged. Some doctors say their suffering may stem from difficult circumstances rather than disease.”
I strongly suspect that is only ’someone’s’ opinion as is 90% of the article. I was under the impression the AP did fact-checking!
I read the article in my local newspaper and I saw it as business as usual in the ‘doubt’ department, (is FM real?) I personally waited for several years for Lyrica, not necessarily by that name, to come on to the market. I am grateful for the relief it gives me, despite a very real suspicion of drug companies. Thank you Adrienna.
Thank you Adrienne for having the time and the energy to fight for us fibromites! I don’t have the energy to fight anymore and am thankful for you and other advocates. I used to do advocacy work but it wore me out. The ignorance and skepticism really took its toll on me.
So please, keep fighting regardless of what others say and think.
way to go adrienne.
Sorry, hate to break it to you but there are histologic and laboratory abnormalities with alzheimer’s, MS, and lupus. and we know what causes them. get your facts straight. also. I’m against fibromyalgia as a disability diagnosis but if you want to have it kept on the books I’m fine with that.
Spanky,
Actually, in those diseases we know what causes the SYMPTOMS, but not what causes the disease in the first place.
People with fibromyalgia also have laboratory abnormalities if the correct tests are done, and we known the causes behind many of our symptoms. The causes of neurological diseases, however, are incredibly elusive because we just don’t understand the brain very well.
Breaking down the points was a bad idea, as your first point is patently wrong. All the diseases you mentioned, whilst having an unknown cause, have a clear, obvious and observable pathology as opposed to CFS or FMS. Thus the controversy. (brain plaques~Alzheimers, rotting sores~ Lupus, Myelin sclerosis ~ MS) This in no way means I believe that these conditions are not real, but the argument is not forwarded by comparing apples with oranges.
Wombatuk,
In those diseases, the symptoms have obvious causes, but we don’t actually know what causes the brain plaques, myelin loss, etc. in those diseases.
Fibromyalgia and ME/CFS also have observable abnormalities, such as an over-active immune system and neurotransmitter dysregulation. We know those things are going on and are causing symptoms, but we don’t know why they’re going on. There’s a big difference between knowing the cause of a symptom and the cause of an illness.