Lutheran pastor, Stephen Friedrich, spoke about his wife’s struggle with Myalgic Encephalomyelitis before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) hearing on June 20th.
CFSAC met for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.
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Committee members, I thank you for the opportunity to address you this afternoon. I thank you for your attention to my words, and your attention to the lives of so many who suffer with this disease. I know that you are here because you want a better future. I have heard this in your voices and in your presentations. You want a future where ME/CFS is no more. A future where this disease can be easily diagnosed, treated, and cured. This is what I want, too.
My name is Stephen Friedrich and I am part of #MEAction in Georgia. I am a Lutheran pastor serving in Marietta where I live with my wife Betsy Friedrich and our five year old daughter, Sarah. My wife Betsy is 33 years old and has been sick with ME for nearly two years. One of the things we most look forward to is getting to go to the beach as a family. The sand and the water are healing for your soul.
Betsy got sick in 2016 with a series of viruses and never recovered. Her doctor had no idea what was going on. A specialist she saw told her to follow the CDC’s guidelines which at the time still recommended the harmful Graded Exercise Therapy and then he told her to google her symptoms. We can do better.
In her googling, my wife found Jennifer Brea’s TED talk, MEAction, and video lectures from leading researchers in the ME field. This convinced us she had ME. To make the diagnosis we traveled to Charlotte, NC where she was evaluated and diagnosed with ME in November 2017. With this diagnosis we finally received a helpful assessment of her condition and the ways we needed to manage the disease with symptom control and pacing. Our story is unique only in the fact that we were able to get her diagnosed, and that came because of her tenacity, and the considerable resources given to us to pursue such a path. Very few people can travel this road.
This week we were supposed to be enjoying the beach with our daughter. Instead because of this disease Betsy and I are at home. We are at home because the exertion of travel leads to significant PEM for my wife. Last summer, before we learned the importance of pacing and PEM, we took a weeklong trip and it nearly destroyed my wife. Prior to that trip she was function at 60% pre-disease capacity. After that trip, she functions at 30% pre-disease capacity. Not knowing how to manage this disease has had devastating consequences for our family which are apparent while we sit at home wishing we could play with our daughter in the sand and waves.
We’re here and not there because Betsy is sick. We’re here and not there because diagnosis is difficult. We’re here and not there because there are no FDA approved treatments for ME. We are here and not there because a cure is stalled by inaction.
Yet, I believe that you can be our allies in taking comprehensive action. I believe that the God who created the sand and the waves, is the same God who has placed you in positions of authority in order to take significant action. I believe God has given you capacity to act in order to move us to a future of ready diagnosis, treatment, and cure. I believe that God has gathered your bright minds, your passionate hearts, you expertise, your agencies, your resources… in order to bring about action, and to bring about that action NOW.
Specifically I call on the NIH to read the letter that #MEAction submitted and meet with us to discuss the comprehensive strategic plan for action we have outlined. I am not willing to quietly sit by while my wife misses our daughter’s life. I demand you take up her cause with every resource God has placed in your stewardship.
I hope that you are able to hear my passion. I want you take to heart my call for comprehensive action. I do not have the ability to educate the medical community the way that you do. I do not have the ability to fund research on the scale needed to get my wife to the beach with her five year old. I don’t, but you do. Now, it is your responsibility to take action. So far you have dipped your toe in the water. I ask you to jump in because my wife’s life depends on what you do. The trends of the past cannot continue. Be our ally. Be bold. Take action.
#MEAction serves as a non-voting liaison on CFSAC. If you are interested in getting involved with #MEAction’s work at CFSAC, please fill out the volunteer form, or email [email protected]
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the