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CFSAC Public Comment - Leah Williams, January 2017
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- 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.
CFSAC Public Comment - Elizabeth Potter, January 2017
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- 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.
About the Community Letter to the CDC
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- Last Updated: 02 December 2016 02 December 2016
Eleven patient organizations and 52 individual advocates have called for CDC to remove recommendations for GET (Graded Exercise Therapy) and CBT (Cognitive Behavioral Therapy) from the CDC's ME/CFS website.
Last year, following David Tuller’s investigative report outlining the grave problems with the PACE trial, twelve U.S. organizations wrote a letter to the CDC calling for the removal of recommendations and statements based on PACE and similar studies.
One year later, CDC’s website still includes recommendations for CBT and GET along with statements and references based on a psychogenic disease theory and studies using the discredited Oxford definition. This guidance is misleading doctors about the nature of the disease and causing physical harm to patients. Accordingly, ME/CFS patient organizations and advocates are calling on CDC to immediately remove this information.
In CDC’s response to the November 2015 community request to remove this information, CDC stated that it was conducting an initiative to update its medical education materials with the most recent information. However, CDC has since stated that that initiative will only update the diagnostic portion of CDC’s website, not the treatments section. No date has been provided by which the treatments section will be updated. Further, CDC has refused to remove statements and references based on the psychogenic disease theory and Oxford definition, such as those posted on CDC’s Science Clips in February of 2016.
Yet, the evidence against these recommendations and psychogenic views is overwhelming.
Collectively, the reports from the National Academy of Medicine (NAM) and NIH’s Pathways to Prevention and the AHRQ Evidence Review have decisively rejected the psychogenic disease theory and called for the Oxford definition to be retired because it includes patients with other conditions and can cause harm. Further, the AHRQ Evidence Review Addendum stated that there was no evidence for GET and barely any for CBT once Oxford studies were removed. Reanalysis of PACE has demonstrated that its claims of treatment effectiveness were hugely overinflated. Finally, patient surveys and the recent article by Tuller have reported harm to patients from these treatments, a predictable adverse effect given the systemic intolerance highlighted by the NAM report.
CDC’s continued inclusion of this information is scientifically indefensible and medically unethical. To protect patients from further harm, we are demanding that CDC take immediate action to remove such information from the CDC CFS website, the CDC Science Clips website, and all other CDC websites that post information about ME/CFS.
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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.