The public testifies about ME

Dozens of people with Myalgic Encephalomyelitis and family members testified about the disease last December before the government agency responsible for advising Health and Human Services on ME/CFS – the Chronic Fatigue Syndrome Advisory Committee.
Speaker after speaker testified about the incredible neglect from the government for the millions of Americans suffering for decades without adequate medical care, social services or hope for medical treatment – or even adequate diagnosis –  given the minuscule amounts of funding dedicated to research ME.
Below are a few excerpts from that public comment. The CFSAC charter is up for renewal in 2018.
A woman from southwestern Michigan spoke about her battles with insurance companies, hospitals refusing to treat her, and going to court to obtain short and long-term disability where the insurance company had hired a doctor to claim that ME/CFS does not exist.
A mother of a daughter who has been ill for 27 years spoke about the need for a Medicare representative to sit on CFSAC; the need for telehealth for people who cannot leave their homes; and for social security to pay for healthcare visits for those who are bed bound.
One person testified about how the UCSF Medical Center – rated the best hospital in California by U.S. News and World Report – stated to the patient via phone that it doesn’t treat every disease, and that it was not interested in providing diagnostic or treatment services for people with ME/CFS.
“Today I urge CDC and the NIH to carefully consider UCSF’s ice-cold message to people with ME,” wrote the person in an anonymous testimony.
A mother of a son with ME spoke about the thousands of people with ME struggling to get food, water, housing and rest needs met who are living in tents, cars, nursing homes.
“They don’t know where money for food or rent, heating, cooling, care, assisted devices will come from, who don’t have access to basic medical care like thyroid pills.”  
“At this rate, it could be a decade or more before we see an outcome that really makes a difference in the live of patients… We must have zero tolerance for the bad science and false narratives that have held ME hostage for the last 30 years. We must not wait for eventually to make a difference for these patients. There are things we can do today.”
Nicole Betancourt from New York spoke about the ubiquitous experience of suddenly having the symptoms of CFS, but trying to power through it as she was unable to find a diagnosis for her “mysterious” condition.
“I spent thousands on 15 doctors of every variety. Most just looked at me blankly saying things like, ‘It could be anything. I can’t help you.’ I kept trying to snap out of it. My family was distraught and I thought I was going insane. Why couldn’t I just get up? This period of time was not just dark days for me, but dark years.”
Read Nicole’s full testimony here.
A mother asks who will care for her children when she is gone since the medical community and social service agencies are woefully uninformed about ME, leaving patients very vulnerable and unsupported. Denise Lopez-Majano spoke about her two sons who became sick with ME at the ages of 12 and 14 and who are now in their mid-20s and partially bedbound. She ended her testimony with this question:  “What does good enough look like?

  • Full and ongoing involvement of every applicable government agency and ME stakeholders in all projects.
  • Appropriate social services support for patients and caregivers.
  • A widespread, well-funded sustained program to eradicate stigma and misinformation surrounding this disease.
  • Intensive, widespread appropriately funded work to ensure that all healthcare providers are knowledgeable about this disease.
  • Concerted, ongoing, fully funded efforts to bring researchers to this field.
  • Sustained research and center funding commensurate with the burden of this horrible disease!

Read her full testimony here.
A woman diagnosed at the age of 29, and who has been sick for 28 years, spoke about the 38 untimely deaths in just the last two years.
She talked about the misinformation that continues to populate the medical community, including the Mayo Clinic’s recommendation for people with CFS to undergo graded exercise, stating: 
“Gradually increasing the intensity of your exercise over time may help reduce your hypersensitivity to exercise, just like allergy shots gradually reduce a person’s hypersensitivity to a particular allergen.”
The advice given for CFS on the Mayo Clinic completely negates to consider the broken oxygen exchange system, impaired energy production, immune and autonomic abnormalities of people with ME/CFS, explained the speaker.
She spoke about the fear rippling through the community about the retiring of two ME/CFS doctors since there are so few doctors who understand how to treat people with this disease.
“At least 1 million US citizens suffer without medical care another day.”
Watch the public comment:



4 thoughts on “The public testifies about ME”

  1. A horrific state of affairs. Thanks for writing this for all to see. Thanks to the brave speakers who spoke our truth.

    1. The desperate nature of a life with ME/CFS is not just that we need good plans for the future of this disease, we need help NOW with the government insisting that patients not be put on a two year waiting list for Social Security to even hear them beg for help! People fall ill who are parents, who suddenly have little or no income because this disease ravages their body and leaves them unable to work. When they turn to the agencies set in place to help people in their situation, they are shoved away like so much garbage. Left to lives of not only being sicker than you’ve ever been in your life, but having to spend years fighting for services, perhaps with sick children also, headed the only place left to go, homelessness.

  2. What brave people to testify. The truth is that hope of real treatment is a long way off, and medical training takes time, but support for those in dire daily need is only a decision away. The added burden of suffering and neglect on top of severe illness is unnecessary and unconscionable in a Western democracy.

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