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Department of Health and Human Services CFSAC
CFSAC June 20, 2018 Webinar Day 1 - Audio and Transcript
CFSAC June 21, 2018 Webinar Day 2 - Audio and Transcript
Audio Recording | Public comments near end of meeting | Audio point 6:29:30
"So far, you have dipped your toe in the water"...
Citizen 1: Committee members, thank you for the opportunity to address you this afternoon. Thank you for your attention to my words and your attention to the lives of so many who suffer with this disease. I know you are here at this conference because you want a better future, I’ve heard this in your voices and in your presentations. You want a future where MECFS is no more, a future where this disease can be easily diagnosed, treated and cured and that’s what I want too.
My name is XX and I’m part of ME Acton in Georgia, I’m a Lutheran pastor serving in Marietta where I live with my wife, (Betsy Frederick) and our five-year-old daughter (Sara). My wife is 33 years old and has been sick with ME for nearly two years. One of the things that we most look forward to is getting to go to the beach as a family. The sand and the water, they’re healing for your soul.
Now my wife got sick in 2016 with a series of viruses and she never recovered. Her doctors 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 you told her to Google her symptoms. We can do better.
Now in her Googling, my wife found (Jennifer Braos-Pentock), MEAction and the video lectures from leading ME researchers. This convinced us that she had ME. To make the diagnoses we then travelled to Charlotte, North Carolina where she was evaluated and diagnosed with ME in November of 2017.
With this diagnosis we finally received a helpful assessment of her condition and the ways we could then manage the disease with symptom control and pacing. Now 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.
Now this week my wife and I, we were supposed to be enjoying the beach with our daughter, instead because of this disease we are at home. We are home because the exertion of travel leads to significant post-exertional malaise for my wife. Last summer before we learned the importance of pacing and PEM, we took a week-long trip and it nearly destroyed my wife. Prior to that trip she was functioning at 60% pre-disease capacity, after the trip she functioned at 30% pre-disease capacity.
Not knowing how to manage this disease has had devastating consequences on our family, which are apparent while we sit at home wishing we could play with our daughter in the sand and the waves. We’re here and not there because my wife is sick. We are here and not there because diagnoses are difficult, we are here and not there because there are no FDA approved treatments for ME. We are here and not there because there is no cure and it is stalled by inaction. Yet I believe that you, committee, you can be our ally 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 diagnoses, treatment and cure. I believe that God has gathered your bright minds, your passionate hearts, your expertise, your agencies, your resources, your connections in order to bring about action and to bring about that action now.
Specifically, I call on the NIH to read the letter from MEAction submitted and to 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 to take to heart my call for comprehensive action. I do not have the ability to educate the medical community the way you do. I do not have the ability to fund research on the scale that is 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. Thank you very much.
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NIH is investing $16 per person per year. That’s four Starbucks a year...
Citizen 4: Okay, my name is XX, mother of PWME, patient with ME for twelve years. Diagnosed two years ago, I would like to begin with something that my husband wrote. Every person who steps up and away from the crowds that do not seem to care or deny this illness, brings us closer to the day when we shall find the remedy that brings those millions missing back to us.
And when that person who steps up is someone with a position of influence, as you are, that step becomes a giant step. To prepare I read the last fifteen years of succinct public comments, and it was hard for me to fathom how we are still in the same place we were fifteen years ago.
Our story is not much different, my daughter and her husband went on vacation twelve years ago. They both got sick, he far worse but he recovered, she never recovered. My daughter worked as an assistant marketing manager in a large corporation. And now, house bound she cannot have children, she cannot plan a career, unable to be there for the people she loves.
One million people languishing in their homes, in their beds, were living as my daughter says the incredible shrinking life. Stupidly we thought that once my daughter found a specialist and was diagnosed she would be better. We soon realized that there was no cure. My epiphany shock led me to volunteer and advocate and I would like to give a voice to some of the MEC patients I have met.
The woman who did not have the energy to speak or sit up but donned her million-missing t-shirt, participated from bed on our conference call with her senator’s office. The young person who used life savings going from doctor to doctor and is now considering suicide rather than being a burden to family, the young woman who said if not for her husband she would be homeless. The young person who said she wanted to participate in a call to her senator but was too ill.
The NIH is investing $16 per person per year. That’s four Starbucks a year. What is the economic cost to society of the one million who suffer from MECFS, lost wages, unnecessary and unproven medical treatments, parents and spouses that need to cut hours to care for their loved one. One million PWME excluded from the workforce year after year hoping for help.
Spending $165 a person a year on research and medical education, the same as Parkinson’s with the same disease prevalence would be a return on investment far greater than 100%. My cousin has Parkinson’s, she can travel, play piano, visit her grandchildren, my daughter has MECFS, home bound, cannot read, car rides to doctor must keep her eyes closed, the visual stimulation is too much.
And I read from the letter that was sent on behalf of Dr. (Frances Collins) to a person with ME on (Jenny Spotilla)’s blog, first, let me express my heartfelt concern for you and the millions of other men and women suffering from MECFS. This is a terrible disease and we must all work together doing what each of us can to find safe and effective treatment for MECFS and restore lives to health.
Dr. (Collins) reiterated the NIH’s commitment to accelerating bio-medical research focused on MECFS. This was written on October 2010, eight years ago. We need your help, you are all that we have, you need to change something if research applications are down, whatever you have been doing is not working. Chicken and egg conundrum, how to get more grant applications, there is a clinical care crisis in the treatment of MECFS.
One, large dollar value RFAs will signal the medical community that you are making MECFS a priority. Universities, medical schools, will see this as a reason to expand education and it may help overcome the bias that doctor’s hospitals have about this disease as well as providing research funding.
Two, there needs to be a change in the review process for MECFS applications. They need to be a priority, you need different criteria for MECFS applications then for diseases already funded at the 3, 8 or 9-billion-dollar level. You need different criteria for a disease that has no hypothesis versus a disease that we somewhat understand.
If just one evaluator thinks this disease is depression or not biologically based, as do many doctors, the proposal will be rejected. Your spending $3 billion on HIV/AIDS, $3 billion on mental health, $3 billion on minority health, $3.8 billion on aging, $9 billion on genetics, $8 billion on neuro-science, $8.6 billion on prevention per year, you would be spending just $16 million a year on MECFS or four Starbucks per person per year.
So, again, for my daughter, for the millions missing, HHS and its agencies, we need your help. And when that person who steps up, someone with a position of influence as you are, that step becomes a giant step. Thank you.
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If I put that same thing on a garbage can lid...
Citizen 11: Hello, my name is XX, I was diagnosed with ME eighteen years ago when I was 27 years old. At the time I had a 16-month-old son and I was preparing to register for classes to obtain a doctor in psychology. The first important thing you should know is that this was my backup plan. Before I got married and had a child, I lived in New York City pursuing my dream of becoming a singer/song writer. At the age of 21, I was signed to a major record label all while continuing my formal education.
My point here is that I was never someone who wanted to be left with no options. Myalgic Encephalomyelitis had done just that, left me with no options time and again. When I first became ill I had no idea how I was going to take care of myself let alone my baby. I was mostly bed ridden, unable to bathe, wracked with pain and severe digestive problems and my body and my mind began to atrophy.
As it turned out, my first husband was not interested in having a sick wife. He was a professional athlete who went on to win his first Super Bowl ring soon after. And my son and I went on to move into my parent’s windowless basement. But, believe it or not, that was the best thing having ME ever did for me and I’m very serious about that. When I hit bottom and I mean a living death, I looked at my son one day and knew that there was no giving up. I was going to crawl my way out of this black hole until I found even the tiniest ray of light.
I had to fly three states away to find a doctor that could help me. He found a better combination of medications, a pacing program, and a nutritionist and I found the courage to accept my new normal. I wasn’t going to be a star, I wasn’t going to get my doctorate, the cruelest thing about this illness is that your dreams and your desire to achieve them don’t go away. It’s your body’s ability to do the things that you desire that inexplicably leave you.
During the past decade and a half, I’ve found a different way to handle the pain and the exhaustion and manage to do a few things a day when I’m lucky by accepting the fact that it’s really hard to live in this body, but it’s really worth the struggle. I know I’m one of the lucky ones, I’m now married to a loving and supportive partner and my son and ten-year-old daughter are doing well.
To be clear, I’m actually sicker now then I was in the beginning. I have cardio-vascular dyssomnia, crippling headaches and I’m losing my vision. I’m on this call today because the one thing I refuse to lose is hope. Hope that the NIH and the CDC will start to recognize just how serious and disabling this disease is. Hope that the next time that I walk in a new doctor’s office I won’t have to be afraid that he or she will be cruel or insensitive because they have little or no knowledge of this disease. Hope that researches might receive the necessary funding, finally so that in my lifetime we might at the very least, find an effective treatment or diagnostic test, if not ultimately a cure.
Before I go, I would like to stress one very important thing to both the government agencies, the CFSAC and other advocacy groups, we must stop using the term Chronic Fatigue Syndrome when we refer to this horrifying illness. This is a country of narratives, and we have painted ourselves into a narrative that is not conducive to advancing our cause. I may never have gotten that doctorate in psychology, but I know enough of the human mind to understand this one thing, if I put something on a silver platter and present it to you, you will see it as important. If I put that same thing on a garbage can lid and present it to you, you will see it as garbage. The implications of this silly name are just that, rubbish.
All the years of unnecessary shame and reckless disregard for this disease won’t begin to go away until we unite as a community and join the rest of the world in singularly using the name Myalgic Encephalomyelitis. I want to thank the committee for giving me this time to speak and I want to encourage all those out there who are suffering not to lose hope. This disease can take over your body and sometimes your mind, but never your spirit. And your spirit together with mine, and all of out there can join together to become a motivating force that will lead to more education, more research, and ultimately much more needed compassion. Thank you.
Administrative and management support for CFSAC is provided by the HHS Office on Women's Health in the Office of the Assistant Secretary for Health (OASH).
