"Embrace" - A Video of Longing

This moves me.   it's unique, expressive and, for me, reflective of how pain, pain's darkness binds and constrains.

EMBRACE from Ashley Rae Pearsall on Vimeo.

Morgan Freeman Discusses His Fibromyalgia

Esquire features an lengthy interview with Morgan Freeman, This Earth That Holds Me Fast Will Find Me Breath.

Here is the money quote, emphasis added:

Every so often he grabs his left shoulder and winces. It hurts when he walks, when he sits still, when he rises from his couch, and when he missteps in a damp meadow. More than hurts. It seems a kind of agony, though he never mentions it. There are times when he cannot help but show this, the fallout from a car accident four years ago, in which the car he was driving flipped and rolled, leaving Freeman and a friend to be pulled from the car using the Jaws of Life. Despite surgery to repair nerve damage, he was stuck with a useless left hand. It is stiffly gripped by a compression glove most of the time to ensure that blood doesn't pool there. It is a clamp, his pain, an icy shot up a relatively useless limb. He doesn't like to show it, but there are times when he cannot help but lose himself to a world-ending grimace. It's such a large gesture, so outside the general demeanor of the man, that it feels as if he's acting. 

"It's the fibromyalgia," he says when asked. "Up and down the arm. That's where it gets so bad. Excruciating." 

This means Morgan Freeman can't pilot jets the way he used to, a hobby he took up at sixty-five. He can no longer sail as well. There was a time when he would sail by himself to the Caribbean and hide out for two, three weeks at a time. "It was complete isolation," he says. "It was the best way for me to find quiet, how I found time to read." No more. He can't trust himself on one arm. He can't drive, not a stick anyway, not the way he used to — which is to say fast, wide open, dedicated to what the car can do. And he can't ride horses as much, though once he rode every day.

He never mentions any of it as a loss, though how could it be anything else? He never hints around about the unfairness of it. "There is a point to changes like these. I have to move on to other things, to other conceptions of myself. I play golf. I still work. And I can be pretty happy just walking the land."

My mom would have appreciated this revelation.

FM on Los Angeles CBS News

check this out:

FM Stories Featured at NYTimes web site

Here's a New York Times forum that features audio clips (about 2 minutes each) explaining and describing what it is like to live with FM. 

Click here.

Frankly, for me, listening to others' stories saddens me.  One says she'd rather feel the pain of being beaten with a bat.  I know what she means!  No energy to do simple things. 

Money In and Out of Health Care Law

Great visual chart from the New York Times on the Health Care Law (I love writing Law instead of bill or reform).  The graph shows money in and money out.   Cost containment, for me, is still a concern.  If only more Dems win so we can get a public option.

You can see chart here.

Based on CBO (Congressional Budget Office) and shows effect on budget and deficit.

Live Blogging the Health Summit

10:45 am
Good choice to pick Lamar Alexander to lead the repugnants. Gosh there is so much broken trust. And now they're issuing an ultimatum right from the start. Alexander is lying when he says there has never before been a huge bill pushed through reconciliation. Says "we don't do comprehensive well." What? Because Republicans label anything big as a scary government takeover and/or expansion. Has to be comprehensive - can't eliminate "pre-existing conditions" and not have mandate. Obama says he'll address some of Alexander's points regarding process. Good. Many need to be addressed!

10:50 am
Here is NPR's "Health Care is No Stranger to Reconciliation"

10:55 am
Wah, wah, wah. The conventional wisdom that politicians need to cite specific examples grows tiresome. Reid is telling a story I already heard. I think on NPR this morning. Who cares? Point is - stop wasting time telling these stories. We know it's a problem. Get to work. Stop telling these horror stories. We KNOW. It SUCKS. Now Reid is pleading that the discussion is based on facts. Yeah - good point! Now making point about process - noting accurately that reconciliation has been used, mostly used by Republicans. TRUE. It's as if there's "a different set of facts from the reality." Noting Dodd (Chair of HELP) committee and Baucus (Finance) incorporate hundreds of amendments from the Republicans, representing "significant imput" from Republicans. Now citing Harvard study about deaths and bankruptcies due to excessive health care costs, even those who have health insurance. Boy this is depressing.

11:05 am
Obama addressing Alexander. Many of the items you suggested are in the bill. Your characterization would not be mine, understandably. Suggests they "discuss the substance and we might surprise ourselves and that might help to dictate how we move forward." If not, then take it from there. Graciously spurning the ultimatum.

11:09 am
Alexander and Obama getting into it over what is factual. Whether premiums would go up or down, according to CBO. Gosh, my mom would have LOVED this debate! Obama now pointing out that buying insurance across state lines IS IN THE BILL.

11:25
I'm behind. Have help over to move somethings around the house given that I can't walk today. Coburn is now speaking for the Republicans. He's a personal friend of Obama. Suggesting that we are treating the symptoms and not the disease and that's bad medicine (he's a doctor). Says there needs to be more prevention. (There is a lot of prevention). Now citing Harvard and saying 20% is fraud. Obama making note. I bet he's got a team of fact checkers in the back. Colburn is taking about the need costs are driven to minimize risk and that needs to be addressed too. Ried points out the Colburn is filibustering. Funny!

11:45 am
Okay - I can't do this live blogging and deal with the movers/helpers, so I'll have to pick up later. MSNBC sucks btw. They've interrupted Hoyer to provide "analysis" and go to commercials. To be continued.....

1:10 pm
Obama is responding to Cantor. Shaming him for use of prop (stacks of paper - the bill). Obama also makes the point that if we only implemented Republican ideas - there'd be a bunch of papers too. Now, making argument for effective government. Food would be cheaper without meat inspectors and regulations. Drugs would be cheaper with out the FDA. This point was in response to Eric Cantor raising the fear that BUREAUCRATS would decide rates. I'd rather government do it than insurance executives.

2 Studies on FM Provide Hope

First, one that might lead to a test, with a caveat - the author of the study, Dr. St. Amand, has popularized a treatment using guaifenesin, which not incoincidentally this study is found to affect those proteins that are found to be different. He writes of the study results, It certainly reflects that guaifenesin has distinct effects on cytokines that have been previously unknown.

But it's still hopeful, just needs to be studied by others.

The function of our genes is to dictate the formation of proteins throughout the body. You know these proteins as enzymes, hormones, antibodies, components of cell structures and so on. Our study examined twenty-five circulating proteins known as cytokines or chemokines. We found that several were abnormally elevated in the blood of FM patients as well as in some of their family members (with and without fibromyalgia) when compared with normal controls.

Two proteins were most prominently elevated. They are known as

Eotaxin

And MCP-1 (monocyte chemotactic protein-1).

When tested in tandem, the elevations correctly identified fibromyalgia in up to 50% of the patients.

But when two other less-prominently abnormal cytokines (four total) were factored into the testing, the diagnostic probability rose to somewhere between 70% - 80%.

Conclusion, unsuprisingly,

Obviously, we are closer to a solution for the complicated aberrant biochemistry and physiology that so thoroughly disrupts the life of fibromyalgics and their families. As Churchill would say, "This is not the end, but it is the beginning of the beginning." It gives credence to our protocol even though its benefits to patients were not part of this project.

Still, hopeful news. For full report, click here.

Then there's this second study, done the European Network of Fibromyalgia Association, but includes Mexico and S. Korea (without explanation). Also Pfizer, manufacturer of the first drug (Lyrica) to be approved by the FDA for the treatment of FM is a sponsor of the study. Perhaps is the upside of FDA approval. Here's the full report on this second study.

Intro:

A new global survey of Fibromyalgia patients and physicians shows that Fibromyalgia, a chronic widespread pain condition, results in poor quality of life and poses a financial burden on patients, often resulting in an inability to work and earn income.

A few specifics:

In all countries surveyed, patients with Fibromyalgia say they experience 6 to 11 symptoms on average, including chronic widespread pain, sleep disturbance, fatigue and sensitivity to touch.

Many of the symptoms are described by patients as extremely or very disruptive to the overall quality of their lives.

Patients say the areas of their lives that are most affected are physical mobility, overall mood, concentration and memory, and motivation and drive.

And on the financial burden:

Fibromyalgia places a financial burden on patients and can result in missed work days and limited ability or inability to work.

Validating that it typically takes years and several doctors for a diagnosis (I've been accused by a disrepectful friend that I doctor shopped)

The burden of Fibromyalgia may be further compounded by the fact that in most countries it takes patients on average 1.9 to 2.7 years, and between 2 and 4 physicians to receive an accurate diagnosis.

Finally:

The exact causes of Fibromyalgia are not yet known. Some scientists believe that there is an abnormality in how the body responds to pain, particularly a heightened sensitivity to stimuli. A growing body of evidence suggests that alterations in the central nervous system may contribute to the pain of Fibromyalgia.

Mostly the study struck me as validating, nothing new, mostly my reaction was no shxt, Sherlock. But at least now there's a Sherlock looking....

Whole Foods Not So Wholesome

Check out this investigative report from the local ABC affiliate, WJLA, here in DC. As usually the FDA is protecting the industry more than the public. Most of the problem foods are under the Whole Foods label 365, which also tends to be the cheapest on the shelf. Problem is that most of the frozen packaged food is grown and packaged in China. So don't be sure it's really organic or safe for you or the environment.



To see the list you can click here. It's an 8 page pdf with the subheading - "Whole Foods Internal Document - Do Not Distribute"

Click here for more information (scroll to bottom) and to file a complaint with the FDA National Organic Program.

Well, I suppose now I'll be going to the Dupont Circle Market today and every Sunday......

FM & Sex

Here's another thing, to quote George Clooney, that just really depresses the shit out of you: Chronic Pain and Sex: a Couple's Gentle Battle with Fibromyalgia from ABC News. Just horrifying.

The husband says:

"You really have to focus on the non-physical aspects of love when you're in a relationship with a person in chronic pain," says her partner, Sam Chupp, 40. "You have to concentrate on the mental and spiritual bond in order to carry you through times she has a flare [the worst period of pain]."

Men like that are very rare. This couple became a couple 10 years ago and he's decided to stick to it. The better or worse part of the vows.

What it means:

Armistead does everything she can to feel good on their scheduled nights. She refrains from shopping or going to appointments on those days (that would make her too tired), and her teenage daughter (from a previous marriage) goes out with friends.

The challenging part is that even though they can schedule time for each other and stick to it, there's no way to schedule random flare-ups. The key, Chupp says, is not to set specific goals for the night.

"We just say we are going to enjoy each other, no matter what it turns out to be," he says. "Cuddling is a wonderful thing and can happen a lot more often than sex."

"I'll put it this way. Sometimes you want to share a big fancy dinner with her, but it turns out you just have to have a sandwich by yourself," he says.

Reading about this couple just depresses me. She has a daughter and obviously a very sensitive husband.

Not even this ending redeemed the horror of the rest:

"You have to scale back your expectations from high school —, but high school was never this good," he quips. "When you are in love with someone and she is in pain all the time, when she wants to have sex with you in spite of it, it means she really wants to have it. You feel chosen and special."

Poetry & Prose on How To Cope With Illness

In terms of dealing with illness, which I wrote about yesterday, I wanted to share a favorite passage from Jane Austen's Persuasion regarding the value of a flexible mind. I certainly related to Mrs. Smith. And I relished that this passage was written 2 centuries ago:

In the course of a second visit she talked with great openness, and Anne's astonishment increased. She could scarcely imagine a more cheerless situation in itself than Mrs. Smith's. She had been very fond of her husband,--she had buried him. She had been used to affluence,--it was gone. She had no child to connect her with life and happiness again, no relations to assist in the arrangement of perplexed affairs, no health to make all the rest supportable. Her accommodations were limited to a noisy parlour, and a dark bed-room behind, with no possibility of moving from one to the other without assistance, which there was only one servant in the house to afford, and she never quitted the house but to be conveyed into the warm bath.--Yet, in spite of all this, Anne had reason to believe that she had moments only of languor and depression, to hours of occupation and enjoyment. How could it be?-- She watched -- observed -- reflected-- and finally determined that this was not a case of fortitude or of resignation only.--A submissive spirit might be patient, a strong understanding would supply resolution, but here was something more; here was that elasticity of mind, that disposition to be comforted, that power of turning readily from evil to good, and of finding employment which carried her out of herself, which was from Nature alone. It was the choicest gift of Heaven; and Anne viewed her friend as one of those instances in which, by a merciful appointment, it seems designed to counterbalance almost every other want.

This passage is from chapter 17, and depict Anne's perception of her friend Mrs. Smith.

I also like these two poems by Emily Dickinson:

Pain — expands the Time —
Ages coil within
The minute Circumference
Of a single Brain —

Pain contracts — the Time —
Occupied with Shot
Gamuts of Eternities
Are as they were not —



Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.

Bad Metaphors for Illness

I read with caution and interest this piece, When Thumbs Up Is No Comfort, in the Style section of yesterday's New York Times. In discussing attitude toward illness, acute illness exclusively and cancer specifically, the piece addresses aspect of disease to which I've given much thought. It uses Ted Kennedy and Patrick Swayze as starting points.

I've read The Anatomy of Hope, The Etiquette of Illness, The Lonely Patient - all of which address the themes reflected in this Times piece and which I've contemplated.

Two themes stand out. The first is the utility of denial, false hope, pretending optimism. The second is the utility of the fighting metaphor when dealing with illness.

Regarding the first, I don't deny the helpfulness of a positive attitude in the face of any adversity, including a body that betrays you. I believe in the body-mind connection and that the thoughts you have about suffering can affect your experience of suffering and that doing so is not belittling to the pain itself. In the Buddhist thought I've found so invaluable, there is a distinction between pain and suffering. You can have pain and not the suffering. Not all the time, not at all easily, but I have found that the thoughts about the pain can make the suffering worse.

I do believe that. But it's not that simple or facile. So that said, I do not believe that false hope is a cure all. I do not believe that people die or suffer because they didn't think enough positive thoughts.

I do believe that everyone should and has the right to cope in their own way. I think different aspects and personalities manifest differently. Maybe too because my disease is chronic and invisible, I do at times miss acknowledgment. Because I'm not hospitalized or bald or amputated, I am disbelieved at times and I feel discredited. So I want to jump up and down and scream yes, it's real.

Some find their distress too painful to speak of. I too sometimes find that is true. My old, extroverted, down-to-earth personality would get strength from being around others and from talking to others. But when I'm really in a bad spot, I can't talk and I withdraw terribly. I get strength from being alone. Sometimes that's purely true; sometimes it's because I discern no one wants to be around someone who isn't pleasant, who hasn't the strength to shower and be presentable, or wash her dishes and make her home presentable or is tearful and not filled with good humor.

Because that introversion is so different to my old self, that adds to the sense of disorientation and loss I feel in coping with my illness. But other times, I like to talk about it. I need to talk of it, complain even. And I don't like to feel as though doing so is vulgar or ignoble.

The point is that a person afflicted with illness, acute or chronic, should be able to cope in their own way, which may be different from time to time. That doesn't give a sick person the right to be angry if another doesn't respond as desired. The fact is needs are as mercurial as responses. Which highlights the need for patience and forgiveness and communication - both ways. For me, I figured out the ideal is to stay flexible and aware, mindful and yielding.

Sometimes I simply don't like sunny false optimism. That goes against the grain of my down-to-earth, tell-the-truth personality. Game faces are fake faces. I don't like untruths.

Regarding the second theme - the fighting metaphor, I've always hated the fighting metaphor for dealing with illness that is so pervasive in our culture. There are several problems with casting the illness as the opponent in a war.

1. First because the illness is in our bodies, that means to some extent you are fighting yourself.
   
2. Second, by declaring war, you give the illness power. Think of the War of Terrorism. That name, that paradigm gave Al Qaeda power it didn't have before. Doing so, elevated the opposition and gave it power. That's also why I have felt it's a mistake.

One of the reason I maintain that yoga saved my life is that I learned to not fight, to yield to what is, to allow the flow of what is, to even, when I can, to welcome the pain, invite it in, breathe in it. It's so counter-cultural. It's so counter-intuitive - but doing so, in my experience, does one of two things.

1. Either the pain goes away completely (this rarely happens)
2. or it's grip is loser. It's not gone but it doesn't feel as tight; I don't feel in a vise. If it doesn't exactly go away or float away, the pain feels as though it could. And yes, that possibility is a relief. When you're armed, tight and fight - that has never happened.
   

Hence, my aversion to that metaphor.



So with that background of my personal and pertinent views, here some quotes from the New York Times:

Whether such images (images of healthy, smiling Kennedy and Swayze) inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.

The downside and burden of such public images and what they encourage:

But Rachel M. Schneider, a clinical social worker at Memorial Sloan-Kettering Cancer Center, said that while many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome.

“Hopefulness is real,” Ms. Schneider said. “But patients say, ‘I have to be positive, I can’t cry, I can’t let myself fall apart.’ And that is a burden.”

(snip)

Dr. Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University. “We only hear about those who handle it well,” he said.

Reality - as described by one cancer patient who admits fear and grief:

Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. “I never felt brave or courageous,” Mr. Kosinski said. “I don’t know what that means. I was scared. I was the furthest you could be from courageous.”(snip) It’s important for patients to realize that “there’s no scripted way to handle this,” Dr. Fins said. “They can write their own script based on their own narrative. “If we fail to meet patients where their grief has taken them, we have sequestered them off,” he added. “Then patients and families talk about platitudes rather than what they’re really thinking.”

And about that fighting metaphor:

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.

Yes, I like the metaphor as a journey better - sometimes it feels like a spiral staircase, as Karen Armstrong suggested in her memoir. One step forward, two steps back; often times in circles but hopefully always ascending, always moving.

About other problems with the fighting metaphor:

“The day of my last treatment, people congratulated me, but I felt blindsided by my reaction,” Mr. Haimowitz said. “I thought, ‘Oh my God, I have nothing left to fight with,’ and I felt angry that there was nothing left for me to do.” (snip) “The thumbs-up attitude is very important,” said Darren Latimer, 33, a banker in Chicago who had surgery for a malignant brain tumor in May 2005, and still receives chemotherapy. “You can be in the dumps very quickly in our business, the business of being sick. But can you fight your disease and not yourself?”

This ending made me cry:

Brian Wickman, a manager at a luxury hotel in Manhattan, needed to reframe his loved ones’ language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on Mr. Wickman’s ankle because it was so rare and because, “no one wants to publish when all the subjects die.” A month later, Mr. Wickman, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.

His awestruck friends would say, “ ‘You’re so brave, I don’t know how you do it, you’re my inspiration.’ They would put me on a pedestal,” Mr. Wickman said. “That doesn’t allow me to be human and in pain, angry or depressed.”

HIS e-mail messages reveal a spirit of great equanimity and eloquence: Mr. Wickman, who now wears a prosthesis and has resumed athletic activities, will attend graduate school in the fall for a joint degree in social work and divinity.

But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. “This is not a call for pity responses,” he would add. “Just let me be where I am.”

Yeah, just let me be where I am, without making me feel bad about my self pity. Let me be someone on a journey, sometimes difficult, hopefully with humor and perseverance. Let me yield to what is without being criticized for not being stoic, or noble or positive.

Frida Kahlo and Fibromyalgia

A good friend sent me this image and notes last night, and I have to say I now view Frida Kahlo's work in a new light. I've seen the painting. I've seen Selma Hayek's movie Frida. This portrait well portrays the anguish and pain.

Here's what my friend sent me:

The great Mexican painter Frida Kahlo suffered chronic widespread pain and exhaustion after a terrible accident. Our research suggests that FM was the cause of Frida's chronic illness.

Many of Frida's portraits, for example in Kahlo Columna Rota (The Broken Column) communicate pain and anguish with the emotional overtones that FM patients frequently use to describe their illness. In her diary, Frida draws herself in pain and eleven arrows point to specific anatomical sites. Many years later, the majority of these sites were found to be the typical fibromyalgia tender points.

In my own research, and as I remember from the film, Frida Kahlo was in a car accident in late adult hood. Car accidents are a documented cause for the onset of FM.

Diane Rehm Show Does Hour on Fibromyalgia

The Diane Rehm show did a whole hour on Fibromyalgia on Tuesday, the day after the New York Times article appeared.

One of the guests included Alex Berenson, the reporter who wrote the piece who admitted is beat is covering the drug industry. He is not a doctor or even a health reporter. He covers the pharmaceutical market. And he admitted that the medical establishment agrees fibromyalgia exists.

And he revealed what a jerk he really is. Among the amazing things he uttered were -

• "a lot of doctors are skeptical' but won't talk about their skepticism (this has no basis in fact; see this post.)
• "skepticism is natural because it affects a specific population - middle age women."
• "They are difficult to deal with and lots of doctors don't like them."

He was asked if he was surprised about the reaction before he wrote the story as he investigated and instead he characterized the reaction after - that the "issue" provokes a lot of vehemence" from the patients "whereas doctors have been saying great job for saying what we all know is true."

Then he added, "by the way I quoted people on the other side." Yeah right - two and then he implied that they weren't impartial or believable.

And then he said the driver of the diagnosis is disability!

But - if you listen - be sure to get to minute 34 - at that point a Dr. Charles Argoff called in from Albany College where he is a professor and neurologist as well as director of the pain program. He said he was dismayed by the article. There should be no doubt. There have been "4,500 scientific articles" and that fibromyalgia is not to be doubted as there is a "great deal of rooting in basic science." He granted its difficult to treat, but indicated that's because of what the doctors and scientific community do not yet understand. He was asked how he accounted for the skepticism of some doctors, and he responded that he'd never spoken to any of them and that frankly, "I don't understand it."

His tone of outrage was comforting.

You can listen to the 46 minute discussion and see who else was on, by clicking here.

National Fibromyalgia Association's Statement

The National Fibromyalgia Association responds as well -

the article presents outdated opinions and neglects to discuss the research advances of the last decade and instead focuses on the opinions of a few medical outsiders who still do not believe in the legitimacy of fibromyalgia. By omitting the groundbreaking research and scientific evidence gained over the past 20 years by institutions such as Johns Hopkins University, University of Michigan, the National Institutes of Health and the Food and Drug Administration, the article gives a slanted and unrealistic perspective.

They also note -

Our 2007 research survey findings showed that 81% of physicians agree that fibromyalgia is a common, chronic central pain disorder that can cause intense suffering for patients. And instead of dismissing the effect fibromyalgia can have on a person's life, the medical community has shown that fibromyalgia can damage health-related quality of life even more than rheumatoid arthritis and advanced cancer.

Read the full statement here. They also ask for those who care about people who have this disease to please write the New York Times.

ABC News Offers a More Balanced Report

The piece begins:
"Doctors agree that the best way to deal with fibromyalgia..."

which automatically puts this news report at a more realistic level than the New York Times.

See or read the fully report here.

American Pain Association Responds

The American Pain Association responds in this statement.

They note that the front page New York Times piece failed to mention, namely that the American Medical Association, the National Institutes of Health as well as the American College of Rheumatology's.

They correctly note that the article -

• "belittles the reality of people suffering from pain."
• "demonstrates not only a lack of understanding of the human response to pain, but also a serious lack of human compassion..."
• "further stigmatizes"

Thank you American Pain Association

Co-Founder of National Fibromyalgia Association Writes

Some of you may have noted that one of the letters printed yesterday by the New York Times was by Lynne Matallana, the president of the National Fibroymyalgia Association, who was quoted in the article (and pictured on the front page).

I cited one of the co-founders, Karen Lee Richards. And then last night she wrote me. (As I told her, I felt like a superstar has written and acknowledged a commoner). And she shared with me her post on Monday's article. She wrote well (and more succinctly than I) and revealed to me something I did not know:

"Not surprisingly, the two physicians he quotes who do not believe FM is a real illness are Dr. Frederick and Dr. George Ehrlich. Anytime the validity of FM is questioned, these two gentleman can be found in the forefront."

I encourage you to read the full post here.

Letters to New York Times on Fibromyalgia Article

The printed letters in today’s edition of the New York Times address the piece on fibromyalgia on Monday.

For me personally, the letter from Benjamin Natelson, director of the Pain and Fatigue Study Center at UMDNJ was especially meaningful as that was where I was finally diagnosed on August 9, 2001 after 18 months of confusion and deteriorating health. And I stayed in New Jersey for 2 years to work with them to improve my health and ability to cope, participated in a study there, and I am still in touch with them. They are good, intelligent people working very hard, and I’m very grateful for their work too.

My favorite paragraph:

Would that it were true that fibromyalgia patients “obsess over aches that other people simply tolerate”; in truth, they suffer from pain other people can scarcely imagine. To imply, as the article does, that doctors who advocate on behalf of these patients are somehow “in the pocket” of the pharmaceutical industry is to betray a stunning degree of cynicism, and of callow disregard for the real lives and deep suffering of millions of human beings.

Read all of them here.

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

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 function^{ref 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 FM^{ref 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.

The Difficulties of Chronic Pain

The last three weeks Jane Brody of the New York Times did a series of columns on chronic pain.

Living With Pain That Just Won't Go Away (November 6th, 2007) yes, she mentioned my condition and also delineates the problems chronic pain cause beyond the physical difficulties including the adverse affect on social connect, economic burden and misunderstanding. Most apt statement: "No one in his right mind -- and most patients were in their right minds before the pain began -- would trade a fulfilling life for the misery of chronic pain."

Chronic Pain: A Burden Often Shared (November 13th 2007). Really address to those who have a family member in pain and how to cope. The suggestions struck me as helpful and relevant, if only I had a family who could take steps one and two. Most apt statement: "Whether you are the patient’s primary or intermittent caregiver, it is important not to contribute to feelings of helplessness."

Many Treatments Can Ease Chronic Pain (November 20th, 2007). She doesn't talk about yoga, but does mention meditation. And she didn't mention what for me was the most difficult side effect of painkiller drugs - dizziness. And she mentioned the fentanyl patches but neglects to note that since July 2005 the FDA has been investigating the patch as a cause of death, a report I saw on CNN just tonight.

On a related note, Dr. McCall has a two-part piece on chronic pain on the Yoga Journal web site.