On February 25th, the syndicated cartoon Blondie mentioned Chronic Fatigue Syndrome and the new name, Systemic Exertion Intolerance Disease, as recommended by the Institute of Medicine (IOM) committee that produced the report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. It appeared in the Washington Post, the Salt Lake City Tribune and – we assume – many others.
For some, this was seen as a good sign – that ME/CFS has become more conversational and the new name proposed by the IOM had risen through some of the media clutter. For others, it was very problematic as it seemed to perpetuate an insensitive and outdated mindset on the lack of severity of ME/CFS. Either way, we saw the cartoon as an opportunity to impart some important education.
The Bateman Horne Center, via Dr. Bateman, submitted a letter to the editors of the Washington Post and the Salt Lake City Tribune. We have yet to hear if either will be published, but will keep you posted. Regardless of publication, we felt it was important to respond and use this as an opportunity to educate the staff of the paper. We hope it will make its way to educating their readership as well.
If the cartoon ran in your city, we encourage you to do the same – submit a letter aimed at educating those who run the paper and those who read it. When we can all speak in harmony, our individual voices are amplified. It is important to communicate our important point – that ME/CFS is a serious and debilitating disease that needs more empathy and understanding, better diagnosis and treatment, and significantly more funding of innovative and robust research – in such a way as to be respected and heard.
Our letter to the Tribune is printed here in its entirety – the submission to the Washington Post had a strict word count and was a shortened version of the same. Should you decide to notify your local press, feel free to borrow some of the language herein.
The Public Forum
The Salt Lake Tribune
90 S. 400 West, Suite 700
Salt Lake City, UT 84101
RE: Blondie Cartoon, from February 25th, 2016
I’m writing in response to your February 25th Blondie cartoon in which you mentioned Chronic Fatigue Syndrome (also known as myalgic encephalomyelitis or ME/CFS) and the new name recommended by the Institute of Medicine in late 2015, Systemic Exertion Intolerance Disease or SEID.
I served on the Institute of Medicine committee that produced the report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness which proposed the name, Systemic Exertion Intolerance Disease (SEID). To date, the new name has not been adopted.
- The complete report can be accessed online at http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx
- The newly released ME/CFS Clinicians Guide can be accessed online at http://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf
As the founder and chief medical officer of the Bateman Horne Center (BHC), a nonprofit in Salt Lake City with a personal touch and global reach for those who suffer ME/CFS and Fibromyalgia (FM), I am very invested in the ME/CFS and FM community. It is estimated that there are 5 million people in the US who are affected by these common, often co-occurring diseases. That is more than those with MS, lupus or many forms of cancer—yet few dollars are dedicated to their research, and few doctors understand how to diagnosis or treat symptoms. Many patients bounce around from doctor to doctor for years with no answers as health deteriorates and pain increases. Many become hopeless, homebound and unable to work or care for their families while remaining trapped in a void of scientific and medical information.
For far too long, patients have been met with disbelief, disdain and even hostility. When my sister, Shauna Bateman Horne, fell ill she was unable to get a diagnosis or the treatment she needed until I was able to diagnose her. BHC is my way of giving thanks to my sister for helping me understand the tremendous unmet need that exists in this patient community. My commitment to them is to bring excellence in research and care. As a media platform with a broad distribution, you have the opportunity to be a part of the solution and bring help and hope to many in desperate need of it. While I am confident that the cartoon was not put forth maliciously, I fear that the unfortunate and unintended consequences were to perpetuate the gross misunderstanding of the severity of ME/CFS.
I watched my sister, Shauna Bateman Horne, suffer from ME/CFS and die from a cancer strongly linked to ME/CFS. My sister and many others like her are why I founded BHC: to give hope. It is my sincere hope that you will help us move progress forward by increasing understanding of this very real, very complex disease that causes millions to suffer.
Lucinda Bateman MD
Founder and Chief Medical Officer
Unduplicated anywhere in the world, BHC, is a nonprofit organization that empowers patients, advances research and improves clinical care for all those impacted by ME/CFS and Fibromyalgia. Our vision is a world where patients are readily diagnosed, effectively treated, and widely met with empathy and understanding.