I answered both questions.
1. What question(s) should we ask on the debate stage?
I suffer from a disease the CDC calls a “Public Health Crisis”. I have been sick since 1983! I am bedridden, severely ill and I lack medical care. I lack medical care not because I don’t have insurance but because there aren’t educated doctors to take care of me or even one FDA approved treatment.
The most severely ill exist bedridden in darkened rooms, with eye masks and ear protection, only having a minimum of human contact for care purposes, all in order to avoid overexertion. Some patients are tube fed. Some have limited communicating ability. Disruption of many organ systems and severe pain are also symptoms.
Anyone can get this disease which often follows a viral-type illness or immune challenge and which affects more than twice as many people as HIV/AIDS with a quality of life that can be similar or worse. Yet unlike HIV/AIDS, we lack medical care, domestic care, appropriate research, treatment, prevention and housing programs.
Government agencies responsible for the health of its citizens have misrepresented ME/CFS, miseducated doctors using poor science, misappropriated funding, and also ignored commissioned reports, our federal advisory committee and letters from congress. Patients are stigmatized to the point of being harmed and abused by doctors, denigrated by the media and outcast from society.
I had been a graduate student. I have been left sick, disabled and forgotten about for decades. How will you urgently get people with ME/CFS the care, services, research, treatments and justice they deserve after decades of discrimination?
2. Why do you want the candidates to answer this question?
This is important because of institutionalized stigmatization, endemic problems of sexism and misrepresentation of ME/CFS as a hysterical woman’s disease (even though it affects men and children too), as a psychosomatic disease, or as a non-disease, as well as discrimination all interacting for decades causing a “Public Health Crisis” and human rights issue.
The lead investigator at the NIH for the only study they are doing on ME/CFS considers it a psychosomatic disease and an invited speaker to the NIH has written that ME/CFS is a “delusional somatization”. Bad science such as the PACE trial has informed policy world-wide. Carol Monaghan MP, said about the PACE trial, “I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century”. The media writes malicious stories about patients with this disease and accuses bedridden patients fighting for their lives, begging for legitimate science, as anti-science when we debunk bad science and tell of the harms the medical profession has caused us.
Top researchers from places like Open Medicine Foundation, Stanford, Columbia, Cornell, Jackson Laboratory, Harvard, Massachusetts General Hospital, Brigham and Women’s Hospital and many other institutions as well as international consortiums need adequate, sustained funding to do the work that is needed, draw in more researchers and create Centers of Excellence.
We desperately need the mismanagement of this disease investigated and corrected on all levels. Our institutions need to be held accountable and patients deserve care and justice!
