Eileen Holderman has been found and is speaking now. Taking CDC to task for failure to do their job. Eileen - thank you for not letting Beth Unger and CDC off the hot seat for their poor performance in responding to requests of patients, advocates, other stakeholders and the CFSAC.
My own additional comments about the CDC and our leaders in the U.S. Government.
1) The CDC have been a major hindrance to this illness and unfortunately the current management of this agency continues to do so. It does not matter how much the CDC toots its own horn, how much they might be working on right this minute to “try” to improve things for ME/CFS patients.
3) Perhaps the highest levels at the HHS, the President and Congress need to take a “very” close look at how the CDC has handled this disease and how it continues to drag its feet to become a leader rather than an alabatross in implementing immediate, substantial change to this mistreated and neglected illness.
4) Perhaps, the HHS, the President and the Congress need to reflect on where this disease was over 20 years ago and the “mysterious” reasons that why this illness is so difficult for the U.S. Government to light a fire under their backsides, to effectively and expediently address this illness that effects and devastates so many lives of their citizens. See, 1996 PrineTime News Segment About ME/CFS that covered the progress the government was making or not making in addressing this ongoing illness, 10 years after the large cluster outbreak in Lake Tahoe and surrounding areas. See,
4) We (I) will not be quiet and use an “inside voice”, as suggested by a former CDC employee and scientist. We are coming to your doorstep to speak up and out - loudly and clearly to make it very uncomfortable for you to avoid your responsibility to address this illness in the same manner this Country has done for Polio, AIDS, Alzheimer’s, Ebola, Zika and the flu (just to name a few other illnesses that receive your attention with a sense of urgency, large amounts of funding, and the ability to cut through bureaucratic red tape).
5) This Country should be so ashamed of how it’s citizens and others around the world have been treated or not treated because this illness never seems to get its turn to be at the top of the list for attention and help. How long do these patients need to wait in line to get your attention - 30 years, 40 years, 50 years or longer? Are the sins of those who neglected Tuskegee patients of the past being repeated on ME/CFS patients and their families?
6) To the Secretary of the HHS, President Trump and Members of Congress - How many more patients will we need to bury? How many more lives and families will need to be sacrificed because you are
not doing your part to correct past mistakes/neglect and really change the future course of this illness?