- 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.
- Last Updated: 01 February 2017 01 February 2017
January 13, 2017
Chair and Members of CFSAC,
My name is Leah Williams. My husband and I live in Cambridge, MA. Both of our children have ME/CFS. My son, now aged 21, became sick when he was 12. He had what seemed like an ordinary cold, except that he never got well again. Instead, he suffered increasingly from headaches, joint pain, unrefreshing sleep, overwhelming fatigue and difficulty concentrating. He missed most of high school because he was too sick to physically attend. His health has improved somewhat over the last few years and he is attending college, but he does not have the energy or stamina of a healthy kid his age. My daughter, now aged 18, also became sick at around the age of 12. Her symptoms were similar and equally debilitating and have gradually gotten worse. She is enrolled in our local high school, but is much too sick to attend. She is taking online classes and has a tutor at home.
We have had wide range of experiences with schools from warm and supportive, through benignly neglectful to openly hostile. The best experience was the grammar school that my son attended for the first three years of his illness. The school staff were able to accommodate his highly variable attendance. Some weeks he could go a few hours every day and some weeks he was too sick to attend more than one partial day. They worked closely with us to send work home for him, to accept work late, and to modify assignments. These accommodations enabled him to successfully complete 6th through 8th grade.
The worst experience was the school my daughter attended for 8th grade. In spite of a Section 504 plan describing her illness and the accommodations she needed, and in spite of letters from her doctors, the school staff made everything as difficult as possible. The principal said that my daughter could not make up work that she missed in class, and I was not allowed to come on campus to drop off or pick up assignments. The school social worker told my daughter that she had to either throw up or faint before she would be allowed to leave a class. The assistant principal filed a truancy claim against my daughter in juvenile court. Finally, eight months into the school year, the school administrators agreed to the accommodations we wanted all along, a waiver of the attendance policy, partial school days and modification of assignments, and my daughter was able to successfully complete 8th grade.
I think that awareness and education about ME/CFS would have made a huge difference. If the school staff had known what ME/CFS is and how it impacts schooling, they might have approached our situation differently. This was a few years ago, but it would have helped if they could have found accurate and up-to-date information at the CDC website. It would have helped if the school nurse had attended a continuing education program on ME/CFS. It would have helped if the Public Health Department’s school health manual mentioned ME/CFS at all. And, of course, it would have helped enormously if there were a diagnostic test for ME/CFS. For that, we need more research funding.
Thank you for this opportunity to comment and thank you for all your efforts on behalf of patients and their families.
- Last Updated: 01 February 2017 01 February 2017
RE: Stigma associated with this illness… Public Comment at CFSAC, January 12, 2017
I am Elizabeth Potter, a member of the Massachusetts CFIDS/ME & FM Association.
On May 20, 1985, working at Wang Laboratories as a Senior Systems Analyst, I fell asleep at my desk while typing detailed specifications. When a colleague woke me for the third time in fifteen minutes, I knew something was very wrong! I needed to go home. That became my last day of work.
Within days, my credibility as a respected team leader headed for management ended, replaced by perceptions of hypochondria. I slept 16-18 hours a day as my cognitive functioning rapidly deteriorated. My PCP offered no help and neglected to record my numerous concerns.
Fortunately in 1987, I found a holistic internist familiar with my condition. He gave it a name—Chronic Fatigue Syndrome—and with compassion, helped me to begin to manage my symptoms and he kept meticulous notes.
After five years and two denials, I finally obtained SSDI—a process that significantly reinforced the validity of my condition. Thus when my husband filed for divorce, I assumed I was well armed to receive a fair settlement. Likewise, when my disability insurance provider suddenly cut me off, I felt confident my benefits would be reinstated. In both cases, I lost.
For nearly 32 years, I have lived with the stigma of this serious illness that many still refuse to acknowledge. Financially, had I received fair settlements in both proceedings, I would have the benefit of 2.5 million dollars entering my retirement years and I would still own my home! I was betrayed by my attorneys who failed to believe I was truly ill, and the insurance company that wrongfully broke our contract. The former should be sued for malpractice; the latter for breach of contract. By the time I had recovered enough strength to meet the requirements for filing a complaint; the statute of limitations had long expired. Both the lawyers and the insurance company are protected by the statute of limitations, but who protects me?
Recently, I compiled over 75 symptoms that waxed and waned that I endured for years. Chronic physical pain was sometimes excruciating to the point of tears. Physical de-conditioning created nerve pain, since my muscles could no longer support my vertebrae.
Without comprehensive, stakeholder-approved education, ME/CFS sufferers remain vulnerable to the whims of uninformed experts.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.