CFSAC Public Comment - Charmian Proskauer, January 2017

Details

Last Updated: 01 February 2017 01 February 2017

January 12, 2017

Thank you for taking my comment. My name is Charmian Proskauer and I am currently serving as president of the Massachusetts CFIDS/ME & FM Association. I speak today about the urgent need for clinical education about ME/CFS.

A couple of examples. First, a few weeks ago I was on a radio program with representatives from other local charities. Unlike the others, I didn’t want to talk about our need for money, or for volunteers, or even talk much about our programs in support of patients with ME/CFS. What I most wanted to do was alert listeners to what ME/CFS was, its symptoms and severity, in case any of them might be among the 28,000 people in our state who probably have ME/CFS but do not have a diagnosis, who might be suffering from a disabling illness with no idea what it is, or how to find a doctor who will pay attention and provide help. Yet I did not do this….why? Because we know of only around 30 doctors in the entire state, including all specialties, who we feel confident understand ME/CFS and will treat patients adequately and with respect. I was afraid that patients who suspected they had ME/CFS and visited their doctors would be subjected to the dismissive attitude about this illness that is so prevalent in the medical community and would be discouraged from seeking further help, and this would do them more harm than good.

Secondly, over the last several years our Association has been educating school nurses about ME/CFS in school age youth. School nurses are in an excellent position to identify children who may have ME/CFS, and they have been very receptive to our information. However, the school nurse cannot act alone to diagnose, provide treatment for the child, or insure that the child receives appropriate educational accommodations. The child’s doctor must be involved and we have been told many times that there is no pediatrician or family doctor in the child’s town who is comfortable diagnosing ME/CFS, or who knows what school accommodations would be useful, so the child goes undiagnosed and untreated, with his or her success in school threatened. This leaves the nurse feeling helpless and the families vulnerable to inappropriate child abuse accusations.

The June 2015 Institute of Medicine Report has an entire chapter outlining a dissemination strategy for medical education about ME/CFS. We are asking that CFSAC or a federal agency be designated as soon as possible, to take responsibility for the development and execution of a plan./ This is a critical step in getting patients, whoever and wherever they may be, the care they need and deserve./ Our Association stands ready to help./ We have already begun to work with our local HRSA officials to explore possibilities for getting information about ME/CFS into federally-qualified health centers in New England.

CFSAC Public Comment - Robie (Kristen) Robitaille, January 2017

Details

Last Updated: 01 February 2017 01 February 2017

Robie (Kristen) Robitaille (daughter of Bob and Kathy), 40 years old, ME/CFS 14 years

For the past 14 years I have suffered from fatigue. I spent 12 years of that time just trying to figure out why I was constantly tired. I had no guidance from medical professionals. I bounced from doctor to doctor, trying something different during times when I would be so desperate for relief from the unrelenting sensation of moving through mud and thinking through fog. I saw physicians, acupuncturists, psychologists, psychiatrists, chiropractors, and a hormone specialist; tried veganism, the paleo diet, a numbing agent injected in the back of my head, anti-depressants, Chinese herbs, neural retraining, chakra alignment and lots of different supplements.

My condition has gotten worse over the years. What little social life I had stopped a few years ago. I am unable to work. I am no longer able to exercise. I can’t read more than a short article. I am mostly housebound. If I do go out to an event or a family gathering, my condition deteriorates even further. The resulting crashes now usually last about 2 weeks. During these periods, I am constantly nauseas and feel physically very ill. I become ultra sensitive to light, sound and visual stimulation. I experience severe headaches and emotional instability. I can only move between my bed and the bathroom, and feeding myself becomes a challenge. The most painful of all is that I completely lose the ability to read. So not only am I unable to escape my broken body by diving into a good story, but I also lose the connection to my online community of fellow housebound sufferers of invisible illnesses.

These severe crashes are terrifying. On top of feeling like death, I have to balance a positive outlook with the reality that if I continue to push myself to enjoy the things I love, I could end up completely incapacitated.

I have just started hearing stories about other people who are frustrated that ME/CFS is keeping them from finishing graduate and doctoral degrees. I am sorry for them, but their stories do help me feel justified in dropping out of school, which is something I never imagined I would do. I love school, and I love the path I was on before being floored by this illness.

Four years ago I began the masters of counseling psychology program at Texas A&M University in Central Texas. 2 years into my program I did my practicum, where I served as a counselor for men, women and children. It was like a dream come true! But I was SO SICK. Between clients, I would curl up on a couch and cry because it was so hard to sit up and focus during sessions. Once a week throughout the semester, I would spend the night sleeping in my car near the counseling center in order to spend less time driving and more time sleeping.

All of that effort and there is a stigma that I am lazy. And no doctor could tell me what was wrong with me. Since that painful practicum 2 years ago, I moved to a friend's farm, stopped working and slowed to only one class per semester.

I have a 4.0 GPA. I have one and a half classes and two internships left. I believe I would be a great therapist. However, I will most likely be unable to complete my masters degree because I have ME/CFS. Last semester, I suffered through the grief of acknowledging this fact when I became so sick that I had to drop out of school.

Instead of working to fulfill my dream of helping other people through their own difficult times, I spend my days lying around by myself, trying not to dwell on the fact that life is passing me by. This condition started when I was 26 years old. I am now 40 years old and planning to move halfway across the country to live with my folks because I am no longer physically or financially able to live on my own.

Of the estimated 2 1/2 million Americans with ME/CFS, straining our economy by an estimated $17 billion, how many of them are being held back from aspirations of helping others? Of creating art? Of becoming a parent. Or of being a leader in the community? Millions of people around the world, full of potential, are wasting away day after day on a couch or in a bed because research for ME/CFS does not receive the funding it requires to discover treatment options.