Monday, January 14, 2008

New York Times on Fibromyalgia is Sloppy, Biased & Callous

Yesterday, on the front page, the New York Times printed an article entitled: "Drug Approved. Is Disease Real?" And the piece reports that Fibromyalgia is not a real disease and only been constructed to profit drug company profits.

I'm not going to provide a link to the cite because doing so increases its presence and visibility on the web, and this report should be buried not highlighted. Regrettably, it's also the top of 10 most emailed articles at nytimes.com.

If you know someone who has this disease, be careful about sending it along. Without an accompanying message of dispute (my uncle likened it to those who believe homosexuality can be cured), you could imply that you agree and that would be hurtful to anyone who is afflicted with Fibromyalgia.

First - I accept two premises:
1) drug companies want to sell drugs and in doing so, sometimes use questionable practices
2) there is a dispute about this disease

I'm not against debate and critical analysis. The definition of liberalism is to engage in opposing ideas. And that's a helpful process because debate provides definition and clarity. And that's all for the good.

What disturbs me is sloppy, biased, callous reporting. The New York Times (despite Judy Miller's best efforts) still has an imprinter of validity and authority so that makes this report even more reprehensible.

I have 6 points in response.

ONE: The piece lacks perspective.
Even the piece opening is not fair:

Fibromyalgia is a real disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine approved to treat the pain condition, whose very existence is questioned by some doctors.

And so says the CDC, the FDA, Mayo Clinic, Johns Hopkins, and - oh yeah – The New York Times Health Guide. Further, Jane Brody, the New York Times' long time Health reporter has twice written about Fibromyalgia - once in 1989 (89 - that wasn't a typo) and once in 2000, entitled - get this - Fibromyalgia: Real Illness, Real Answers.

So Pfizer (finally) says so too. Again, they’re not the only ones – in fact Pfizer is late to the issue.

Just because George Bush asserts a fact doesn’t make it, ipso facto, a lie.

Likewise, just because a drug company validates a disease doesn’t make it not a disease.

TWO: The piece does not fully report the facts and in its omissions leads the reader to inaccurate conclusions.
"No biological tests exists to diagnose fibromyalgia." They should have added - "yet."

Readers could reasonably conclude that if no biological test exists that there is no biological basis for the belief that this disease is real. That is NOT true.

See this excerpt from the Arthritis Center of Johns Hopkins (a reputable authority, and with cites to respected medical journals):

With regard to nervous system function, it is thought that persons with FM experience pain amplification due to abnormal sensory processing in the central nervous system. This is supported by studies showing multiple physiological abnormalities in persons with FM, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, low levels of serotonin and tryptophan and abnormalities in cytokine functionref 5.

It has also been suggested that FM may relate to an abnormality in deep sleep. That is, abnormal brain waveforms have been found in deep sleep in many persons with FM. Moreover, tender points can be produced in normal volunteers by depriving them of deep sleep for a few days. By the same token, levels of growth hormone, important in maintaining good muscle and other soft tissue health, and produced almost exclusively during deep sleep, have been found to be low in persons with FMref 3.

Please read the whole link here. Please.

THREE: The piece did not present a balanced dispute.
Intelligent, adjunct professors and doctors fall on both sides. The article cites these doctors:

  • "These people live under a cloud. And the more they seem to be around the medical establishment, the sicker they get." Dr. Nortin Hadler (see SIX below)
  • “Some of us in those days thought that we had actually identified a disease, which this clearly is not. To make people ill, to give them an illness, was the wrong thing." Dr. Frederick Wolfe who now "considers the condition a physical response to stress, depression, and economic and social anxiety." (Even if this is true - that FM is a physical response to stress - it's still a physical response that needs to be treated. Plus see FOUR below)
  • “Most people ‘manage to get through life with some vicissitudes, but we adapt. People with fibromyalgia do not adapt.” Dr. George Ehrlich. (This assertion is so outrageous, I can't respond.)

The piece cites one doctor, Dr. Daniel Clauw, on the other side and doesn’t explain fully his groundbreaking work on the disease using functional MRIs. See this Newsweek piece from May 19th, 2003, Fibromyalgia: Not All in Your Head, the subtitle of which was "Thanks to brain scan technology, this 'imaginary' illness ailment of 6 million people is proving to be very real."

In the New York Times, Clauw is quoted, “What’s going to happen with fibromyalgia is going to be the exact thing that happened to depression with Prozac. These are legitimate problems that need treatments.” An unfortunate comparison, I grant that. Could he not have compared what was going to happen now that fibromyalgia had a drug approved for treatment to exactly what happened to erectile dysfunction with Viagra or Cialis or Levitra? That would have gotten more respect!

FOUR: Wolfe's view is not new or news.
Wolfe's change of heart is one emphasis of the piece, but the fact that his skepticism is not new is concealed. Ten years ago he wrote a piece entitled, The Fibromyalgia Problem. (Journal of Rheumatology 1997;27(7):1247-49.) Also this cite from the Annuals of Rheumatic Diseases.

And then here he is five years ago in an interview -

Dr. Bob: Now, frequently if a doctor hears a patient say, "I ache all over" and they get blood work and the blood work is normal, do they tend to say this is a psychological problem and do a disservice to this patient or what's the deal?

Dr. Wolfe: Well, doctors are human too. I hate to inform you, but they are.

Dr. Bob: We have our frailties.

Dr. Wolfe: And if you can't find anything, then your first impulse might be to say, "you're kinda crazy." These patients are not crazy. Many of them are full-time workers who are going to work. They do not produce as well because they hurt but they are very active people. They're young mothers. They are men in positions of stress in their job, women in stress. So, it's not like you can say these people are crazy sitting in a corner.

Yes, doctors are human, with all that implies. For full text of interview, click here.

My point is only that the New York Times writes as if Wolfe's skepticism and change of view is new and newsworthy. In fact, it is not.

Further and more importantly, Wolfe is credited as "the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia." And neglects to mention that he was only one of 10 authors. For more see this National Institutes of Health web site link.

To my knowledge, none of the other authors have similarly disavowed their work.

FIVE: The piece unfairly undermines those cited who assert the disease is real.
Clauw's credibility is undermined by noting he has consulted with 3 drug companies. It's fair to mention that, but it's not put in context. No other doctor - maybe one who has not consulted with drug companies, is cited and it’s not because they don’t exist – which is the implication.

The only other person to provide the “token” other view is the head of the National Fibromyalgia Association which is a patient advocacy group “that receives some of its financing from drug companies.” Again, the implication is that her view is biased and poisoned by the money her organization accepts. But 2 important facts were omitted.

  1. NFA joined forces with Pfizer only lately and got Pfizer to first run public service announcements to simply raise awareness. I believe this may have been the first time this was done by a drug company. As Karen Lee Richards, a co-founder of NFA, wrote in this post at ChronicPainConnection.com:

The National Fibromyalgia Association and Pfizer…have partnered on an educational campaign to raise awareness about fibromyalgia. The TV spot is well done and refers you to the Web site, www.fibrohope.org....It's been less than three weeks since the FDA approved Lyrica as the first drug to treat fibromyalgia and already the media campaign has begun. I am pleased that Pfizer chose to begin not with ads for Lyrica, but with an educational campaign run by a nonprofit FM organization. The only way you could even tell that Pfizer was involved was a small logo placed at the very end where the Web site information was given.

I daresay it won't be long, though, until we're seeing Lyrica advertisements both on television and in the print media. While I'm not particularly a big fan of drug ads, these will serve a purpose far beyond making more money for a large pharmaceutical company. They will help give fibromyalgia the widespread legitimacy we have worked toward for so many years.

It's interesting (and a little sad) that--even though fibromyalgia has been recognized for several years by the American Medical Association, the American College of Rheumatologists, the Social Security Administration, and the Veterans Administration--it's probably going to be a profit potential for the pharmaceutical industry that really puts it on the medical map. I can only hope this new media exposure will finally bring still-skeptical medical professionals around.

I do agree with our medical expert Dr. Borigini, who noted in his recent SharePost that Lyrica is not right for every fibromyalgia patient. Although I'm happy about any treatment that helps even a few people live with less pain, my excitement about Lyrica's approval exists on a whole different level. In addition to giving long-deserved attention to fibromyalgia, it will open the door to the approval of even more treatment options. There are currently at least two additional fibromyalgia drugs waiting in the wings for FDA approval. And as other pharmaceutical companies see that treating fibromyalgia can be profitable for them, hopefully they will increase their FM research budgets. (emphasis added)

2. NFA advisory board includes nearly 50 medical professionals. Patients founded NFA 11 years ago - in 1997 - and the organization has done essential and important work - including an informative web site, a magazine, and 6 international conferences that provided a necessary forum for exchange of medical research. They've done this for a decade before any drug companies paid any attention (or money) at all.
I recommend you view the Public Service Announcement at the Fibrohope.org web site here. Please.

SIX: The serious harm done by such a sloppy, unbalanced, front page report, is immeasurable.
The explicit message of the New York Times piece is that people diagnosed with fibromyalgia are
  • stubborn - not willing to adapt,
  • overweight (lazy),
  • intolerant - obsessing "over aches that other people simply tolerate"

The implicit message is that the disease is not only not real, but made up for drug companies to nefariously profit. The piece concludes with Wolfe quoted as saying the companies are "going to make a fortune."

So what? So long as they and their competitors invest and research the disease as well, fine by me. I pray every day for better treatment and yearn for a cure.

Such pieces as the New York Times published yesterday are seriously detrimental. CFIDS & Fibromyalgia Self-Help's web site features an article by Lisa Lorden Myers entitled Killing Me Softly : FM/CFS & Suicide. Some pertinent parts:

  • "An illness like fibromyalgia or chronic fatigue syndrome, which is often doubted or neglected by the medical community, the public, and sometimes by family and friends, can present unique problems. Patients with FM/CFS can become victims of isolation and despair."
  • "Patients with fibromyalgia and chronic fatigue syndrome have an exquisite understanding of the pain and emotional anguish, associated with having a poorly understood, incurable disease. 'When you start hearing there is no hope, no treatment, and no cure over and over, you lose your will to fight,' wrote Jan Murphy in a eulogy read at her funeral."
  • "A recent report published by Action for ME, a UK non-profit organization [ME is the UK name for CFS], revealed that 51% of survey respondents have felt suicidal as a result of their illness. Those with the most severe cases of the illness and who received delayed diagnosis and management were most likely to have considered suicide."
I just wish the New York Times could have added to the understanding rather than creating more misunderstanding. And I deeply hope that such sloppy reports don't cause further isolation or mental anguish or add to the despair and increase the likelihood of suicides.

Or keep people who are likewise afflicted from seeking medical care.

Contrary to what was reported, the sooner and faster medical invention occurs, the better the outcome. (see this 2004 abstract funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of NIH by Carol S. Burckhardt, Ph.D. , which concludes: "Preliminary findings suggest that early intervention to assist newly diagnosed young women might lead to better outcomes in health status and quality of life.") Not a cure, but a better resilience and quality of life.

As a good friend wrote to me yesterday:
The last thing a person needs in this situation is lack of support...And the converse--loving, caring unconditional support--can go such a long way toward aiding a person's recovery.
(Thanks Shirley) I am grateful - beyond grateful - for the support of my many friends. They have helped me cope and endure. Myers also quotes Martha Ainsworth who runs a non-profit organization dedicated to suicide prevention, "Suicide happens when pain exceeds resources for coping with pain."

WHAT CAN YOU DO?
I ask if any of you are as disappointed and concerned as I am about this piece and what it signifies as to the state of editorial standards, I encourage you to write to the New York Times. (And I thank Christina for this suggestion of soliciting you to act and state your views as readers of the newspaper.)

To reach the Public Editor, Bryon Calame, who represents the readers, you may
E-mail
: public@nytimes.com
Phone
: (212) 556-7652
Address
: Public Editor, The New York Times, 620 Eighth Avenue, New York, NY 10018

To voice your opinion to the editor you may do so by
E-mail: letters@nytimes.com
Fax: (212)556-3622.
Address: Letters to the Editor, The New York Times, 620 Eighth Avenue, New York, NY 10018

Regarding only letters to the editor (the second address), they advise: "Letters for publication should be no longer than 150 words, must refer to an article that has appeared within the last seven days, and must include the writer's address and phone numbers. No attachments, please."

THANK YOU FOR READING THIS BLOG ENTRY, on this matter that has affected all aspects of my life. If hiring Bill Kristol to opine on the editorial pages wasn't enough for canceling my subscription, this irresponsible report is.

Cassandra

UPDATE: The New York Times printed letters on Thursday the 17th. Read my post about that here.

UPDATE TWO: Karen Lee Richards wrote me and about the New York Times. See post here.

5 comments:

dd said...

As a person with Fibromylgia I have heard too many times, "But you look so good!" this attitude comes from well-meaning people.
The article you printed "Drug approved.Is Disease Real?" not only angered me but may very well have convinced the people "on the fence" about thier notions on Fibromyalgia to say " I knew it he/she is just a nut."
While I always say I would not wish this on anyone, maybe the "debunkers" should have to experience just a week in the life of a Fibromyalgia patient. This sounds cruel but no more cruel than an article based on half truths and biased feelings.
How can you allow such an article that appears to be your opinion into your paper while all the time you have a definition of Fibromyalgis on your site? I am outraged at the publishimg of this article and I am NOT alone.

Anonymous said...

Great points. I have FM and applaud your well reasoned and spot on post. Thanks.

Anonymous said...

My mother in law is a long time medical office manager and "sample abuser". She has used a Fibro-diagnosis as an excuse for rude, drug-induced behavior. The trus condition's credibility has been compromised by "hangers on" like her, and it's a true shame!

Anonymous said...
This comment has been removed by a blog administrator.
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