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A Fibromyalgia Consultant’s Impressions of the NY Times “Health For Tomorrow” Conference

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Guest blogger May Mechem Congdon eloquently summarized her impressions of the NY Times “Health For Tomorrow” Conference in her June 3rd blog post on this site. Here are my impressions:

–I believe Toby Cosgrove MD, CEO of the Cleveland Clinic, has an excellent grasp of what needs to be done to improve health care in the US (no wonder the White House is considering him to run the VA Hospitals!). He believes there are 2 ways to lower the overall costs of health care: 1)more efficient delivery of care–a few large hospitals in every state to eliminate the cost of the building and upkeep of so many hospital buildings with small outpatient centers providing support and 2)less disease therefore less need for patients to see doctors. I agree with both of his points. If the most talented specialists were in a few centralized locations, there would be a greater chance of getting a correct diagnosis sooner (i.e. a fibromyalgia diagnosis!!) and getting the proper treatment. Of course we want less disease, and “wellness” has become such a catchword–but it is a reminder to all of us that we need to do all we can to FEEL well enough to eat right, exercise and be in charge of our own health and “wellness.” Finding the healthiest, most effective treatments is the key for individual health and wellness.

–Genome sequencing is already being used in some cancer centers to determine what treatments work best for for an individual’s cancer. I guess the cost of sequencing is actually quite low–but charges to the patient may not be (unfortunately just like the cost of medications).

–We all know that drugs and healthcare in general cost more in the US vs other countries, but did you know that the US pays nurses more than any other country? Most of the nurses I have worked with are AWESOME and deserve a high level of pay. The US pays nurses 4 times more than Germany does. Does this translate into better care? William Haseltine (who has been a professor at the Harvard Medical School and the Harvard School of Public Health) says studies show it does translate into better care.

–There is a push for patients to be able to access more data regarding what hospitals charge for services, and many devices and apps are being developed to provide more data on sleep, heart rate, steps walked during the day, etc. I think it is great to have access to this information, but I caution readers to understand that just because there is an app for something doesn’t mean the information you are getting is meaningful. I would like to see studies done on how accurately apps measure what they say they are measuring.

–I agree with May Mechem Congdon that networking during the lunch hour was a wonderful way to educate people about fibromyalgia and its various treatments. I even was able to examine/map someone who thought she might have fibromyalgia (her exam showed that she does). This diagnosis will hopefully propel her to research various treatments for fibromyalgia. She even asked me if I needed an office nurse–I think she would be a great addition to my office, promoting “wellness” in fibromyalgia patients.

 

 

A Guest Blogger (and fibromyalgia patient) comments on the NYTimes “Health For Tomorrow Conference”

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The New York Times sponsored a medical conference this past Thursday called “Health for Tomorrow,” bringing together prominent leaders in the medical field, including physicians and policymakers. 300 guests were invited from around the country to address “medicine, research, policy, and wellness,” and many of the speakers explored the economic ramifications of the recent Affordable Care Act in California and nationwide.

Curious as to how many young people would be there, imagining that I would be the only one there under 20 (I’m the 19-year-old daughter of a physician, considering a career in medicine later in my life), I was pleasantly surprised to find a wide variety of ages, demographics, and specialties at the conference. The New York Times was not just a sponsor of this event: it lent its name, but also nominated a few excellent moderators and contributors to spur discussion. Elisabeth Rosenthal, trained as a medical doctor but has recently focusing on the cost of health care for the New York Times, moderated many events and skillfully used her experience with the topic to draw out engaging conversations with her guests. Quentin Hardy, the deputy technology editor for the New York Times, also did a great job moderating. He focused on the pieces regarding Big Data, especially how new developments in technology can improve the health field.

Throughout the conference, an action-packed day beginning at 8:30 am and concluding at around 5 pm, what I found most notable was the engagement of the audience. After each talk, two microphones were set out on either side of the stage and audience members were encouraged to come forward and ask questions. Many did, and we were able to hear from an oncology nurse who is also involved in big data development in a tech startup, a specialist in cystic fibrosis, and the CEO of a hospital, to name a few. These guests were equally qualified to be on stage telling us about their work and its application to the future of medicine. They asked questions that applied to their work, but also drew in the audience and engaged us in the larger significance of these issues in the world. Because the audience was able to participate in the discussion, it became a community effort as we were united by the common goal to help healthcare help more people. Unfortunately, the insightful questions took longer than expected, so we were cut off after lunch. Guests were still encouraged to approach speakers during breaks to continue these important conversations and make valuable connections.

These breaks were also a great way for audience members to get to know each other and learn new things about diseases, business economics, and tech startups (and many more) from the people who know them best. During lunch, we met a gynecology nurse who was interested in Fibromyalgia, and my mother was able to teach her about the disease. My mother and I also provided human examples of the condition to curious guests, helping to dispel the stereotypes about Fibromyalgia by showing that a young person can be healthy AND have this condition, and that my mother was once very sick and is now highly functional. In that way, we both helped educate people we met, making connections instead of relying on clinical data or research papers. This person-to-person networking allowed people with very little experience with Fibromyalgia, but an engagement with medicine or healthcare policy, to gain a realistic understanding of the condition and its treatment options.

We need to “own” our fibromyalgia

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Today is National Fibromyalgia Awareness Day. What are the ways we can increase awareness of fibromyalgia in our communities? One way is to tell people that we have fibromyalgia. That’s right–be honest. I know fibromyalgia is not easy to explain in one sentence. I usually lead off with something like this, “Fibromyalgia is a chronic pain syndrome of the muscles, tendons, and ligaments. It has a number of other non-pain symptoms such as poor quality sleep and fatigue. There is no cure for fibromyalgia, but there are many treatments available and I am working hard to feel better.” If my audience is truly interested, I give more detail. Think about what you feel comfortable saying about fibromyalgia and your condition.

Sure, there is a chance that the person you are talking to will say something unsupportive or downright annoying, but you may be surprised. Many people know someone with the syndrome. Many people have seen a TV commercial for a drug for fibromyalgia. Your unique voice and perspective is important. Join me in helping to educate the world about fibromyalgia.

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Weeding Out Any Negative Fibromyalgia Comments Stuck In Your Brain

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While I was gardening this weekend and pulling out weeds, I thought about a conversation with a recent new patient who told me about her past medical history. Her fibromyalgia symptoms were severe, but came and went, which is so common in this syndrome. My patient underwent many tests and scans. She told me her doctor then reported, “All your tests are normal, so I can tell there is nothing wrong with you. Your symptoms are all in your head.” In my experience as a fibromyalgia consultant the pronouncement that we are fabricating our symptoms and that there is nothing wrong with us can be the most toxic of the weeds–the” poison oak” of negative thoughts that can lodge in our brains. Family, friends and physicians are often well meaning, but since the illness is mostly invisible and they can’t experience what we are feeling, they sometimes minimize, discount or ignore our symptoms.

Symbolically, “weed out” some of the negative comments that may be stuck in your brain such as these:

“You look fine to me…” is a dandelion

“What you need to do is relax….” is an invasive pea vine

“If you weren’t so sensitive and could just push through this….” is an invasive wild onion

“You are STILL sick…? is crab grass

“Fibromyalgia doesn’t even exist. Show me the evidence that it does….” is poison oak

YOU know your symptoms are real and that you are doing your best to feel better. Take a deep breath and pull the “weeds” from your mind’s”garden” so that the positive, healthy thoughts, the “flowers” can grow, thrive and keep the “weeds” out!

 

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Fibromyalgia is a Real Disease: Discussion of a New Blood Test To Diagnose Fibromyalgia

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I think I speak for most fibromyalgia patients when I say we yearn for physicians and the general public to realize what we have known all along–that fibromyalgia is a real disease. We are not “just tired” or “just stressed out and just need to learn how to relax.” Our symptoms of pain, fatigue and non-restorative sleep (and many others) are not imagined. A definitive blood test would help silence the skeptics and legitimize our condition.

For fibromyalgia to be recognized as a disease (and not just a collection of symptoms) not only does there need to be an “identifiable group of signs and symptoms” attributable to fibromyalgia but “consistent anatomic alterations” must be found.*

Does the answer lie within our immune system? Years ago researchers began to hypothesize that certain immune system proteins (chemokines and cytokines) might be affected in people with fibromyalgia, so much so that the blood levels of these proteins might be different in their blood. If the pattern is unique in fibromyalgia patients could this be demonstrated in a blood test?

Dr. Paul St. Amand and the researchers at the City of Hope published a study in the Journal of Experimental Biology and Medicine (6/5/2008), entitled “High plasma levels of MCP-1 and eotaxin provide evidence for an immunological basis of fibromyalgia.” MCP-1 and eotaxin are types of cytokines and chemokines. This study found that these two proteins were elevated in the blood of people with fibromyalgia, and when 2 additional cytokines (tumor necrosis factor alpha and interferon gamma) were factored into the testing the diagnostic probability of a person with this blood protein pattern having fibromyalgia rose to somewhere between 70-80%. More information on this study can be found on Dr. St. Amand’s website at www.fibromyalgiatreatment.com. The researchers found that the people in the study who were treated with guaifenesin for at least 3 months (as part of Dr. St. Amand’s guaifenesin protocol) had higher levels of eotaxin than those not treated with guaifenesin. This indicates that guaifenesin has distinct effects on cytokines, an intriguing finding.

This week the March/April 2013 edition of “Fibromyalgia and Chronic Pain LIFE” reported that Dr. Bruce Gillis and the researchers at the University of Illinois at Chicago have developed a commercial blood test to diagnosis fibromyalgia, using differences in the chemokine and cytokine levels in the blood of over 200 people with fibromyalgia as compared to people without the syndrome. This test (called FM/a) is expensive ($774) but is reported to be more than 93% sensitive diagnostically and may actually save patients time and money if they are able to get a definitive diagnosis more quickly (Dr. Gillis notes that on average fibromyalgia patients spend 5 years and thousands of dollars before they receive a fibromyalgia diagnosis). For more information about the test, go to www.thefmtest.com.

So do we break out the champagne? Can we yell, “I told you so!” to all the naysayers? Could the FM/a test be the game changer we have been looking for–a reliable easy to obtain blood test that accurately diagnoses fibromyalgia? Maybe. Time will tell. I am cautiously optimistic. Even though Dr. St. Amand and practitioners trained by him (such as myself) can accurately make the diagnosis of fibromyalgia very quickly using a targeted muscular exam of the anterior thighs (for much less than $774!) we can’t possibly examine everyone in the world who wants to know if they have fibromyalgia. An accurate blood test would be helpful in some instances.

An accurate blood test may make the earlier diagnosis of fibromyalgia a reality. If we look back, most of us with fibromyalgia were having symptoms beginning in childhood or early
adulthood. Wouldn’t it be wonderful if we knew back then that we had fibromyalgia so we could begin treatment? Wouldn’t we love to have back all the days we were too fatigued or in too much pain to work, to attend school, to socialize with friends or to participate in family activities?

When fibromyalgia is recognized as a legitimate disease and diagnosis is made earlier perhaps a wider range of treatment options will then be discussed. Too often doctors hand patients Lyrica samples and do not have the time of the ability to discuss a wider range of treatment options–many of which can be more effective with fewer side effects than Lyrica type drugs (but that is the topic for my NEXT blog post!)

*”What’s the difference between a disease and a syndrome? And how it applies to Fibromyalgia and Chronic Fatigue Syndrome.” by Adrienne Dellwo in About.com Guide Updated March 29, 2012