Ed Burmeister

Ed Burmeister is married to Jeannette Burmeister and advocates for adequate care and treatment for patients of ME on behalf of his wife. He attended the Washington, DC, Millions Missing protest in front of the HHS building on May 25, 2016. He practices law for Baker & McKenzie.

In April 2015, following hip surgery, he wrote a poignant letter expresses the contrast of care he received compared to his chronically ill wife:

"Last Wednesday, I had a complete hip replacement. It was a short procedure (1-1/2hours). No general anesthesia required.  I was out of bed the day of surgery and home after two days.  On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain.  I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after the surgery.  Ibuprofen does the trick.

Well-wishing family, friends and colleagues sent cards, flowers and gift baskets. These were all nice to receive and I appreciated them. There have also been numerous and repeated inquiries about my progress. Just a lot of thoughtfulness all week.

Contrast this with the way Jeannette and her fellow ME patients are viewed and treated by the same cohorts. Their disease, myalgic encephalomyelitis, is many multiple times worse than what I went through and it is ongoing, in Jeannette’s case for over nine years now. Many others have been sick much longer, some for decades. ME patients will most likely be sick for life and they are typically getting worse, as ME is often progressive.

Most activities that others don’t think twice about are impossible for Jeannette. She cannot stand for more than just a few minutes. She cannot walk more than just a few blocks. Sometimes, she cannot walk one block. Her debilitation goes far beyond the effects on her mobility and reaches into every corner of our lives. She is never comfortable, not even for a few minutes. It is always just a matter of degree of the relentless misery. Jeannette’s only contact to the outside world, besides the infusion room, is Facebook. But her presence on social media is frequently judged by some (what her friend Dave, also an ME patient, calls) normal-health people. It is estimated that about 25% of ME patients are sicker than Jeannette, some to a point that is unimaginable to everybody who has not been around those who are near death.

Jeannette is unable to leave the house on most days, and then generally only to receive thrice-weekly infusions, and spends most of her time lying down. Even sitting is impossible for extended periods. If she ignores her limits, it comes at a big price in the form of feeling considerably worse. Last Wednesday, the day of my surgery, Jeannette had no choice but to sit in the hospital waiting room for hours. There was no way to elevate her legs, which would have helped somewhat. Her only alternative was to lie on the floor, which she has done at the airport and other places in the past, but couldn’t risk in a hospital due to her being immunocompromised. At the end of the day, she was at least as impaired as I was having just come out of major surgery. The next day, she was too sick to visit me in the hospital, for which she beat herself up. She wanted nothing more than to be there next to me in the recliner the hospital staff had kindly moved into my room to accommodate her disability. But she couldn’t. That day, she didn’t eat, she could hardly move or talk. It was her payback for the sin of being there for me on my day of surgery.

It breaks my heart to see what Jeannette and other ME patients go through every day of their lives due to being this sick. But something else is almost more intolerable and that is how society treats them.

The thing is, when she is able to go out to the doctor or for an occasional meal with me, Jeannette often looks normal, often fantastic actually, despite being quite sick because she rests up for her outings in order to be able to make them and she probably also operates on a fair amount of adrenaline when she does leave the house for which she pays dearly. There are times when her appearance matches her debilitation and she looks like death warmed over, but at those times, she is usually too sick to leave the house. Nobody sees it. When others see her on those better days, they simply cannot seem to take in the degree of suffering she endures on an ongoing basis. It is as if, despite her achievements, she has no credibility with society, which makes split-second assumptions about her health merely due to her particular diagnosis and what people think they know about it, which typically has very little to do with reality. At best, her disability is ignored. At worst, she isn’t believed. Hence, she does not receive flowers or gift baskets or cards wishing her well. Much worse, she does not receive the consideration and understanding that even a modest comprehension of her disease should provide.

I think it is as hard on her as the suffering from the disease to have to endure this constant indifference and complete lack of understanding by those around her. The absence of any validation of the degree of her disability and of any consideration for her special needs is, in and of itself, debilitating and robs Jeannette’s soul of the nourishment and support she so desperately needs.

The determination with which society refuses to acknowledge the severity of ME would be hard for me to believe if I didn’t witness it almost daily. A week after major surgery, I am multiple degrees less sick than Jeannette is almost every day, but–except for her fellow patients from whom she fortunately draws a lot of strength–nobody around her knows it. Worse, it seems that people don’t want to know it."

HHS/CFSAC Testimony

 * CFSAC Public Testimony Wednesday, December 11, 2013

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