- 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.
- 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.
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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.