And the people on the committee that have limited knowledge of ME/CFS can't even take the time - perhaps maybe a couple hours - to gain knowledge concerning this illness so they can perform their duties on the panel. Why be on the board if you have no interest to learn...that should be a clue??
What this community fails to realize that all these actions although well intention and good, will not change the course of events or policy not one iota within HHS.
With the example of the Gulf War Veterans before you and now another Federal agency allowing companies to amass wealth in the amount of $600 million dollars from taxpayer backed credits by the consistent practive of violating a number Federal law and statutes causing the burden to land squarely on the backs of students
https://tinyurl.com/ny66k6q
The only way you will be able to stop this contract which this community refuses to acknowledge and the only one that can force HHS to act is filing a Federal Class Action Lawsuit for an Injunction or Federal Class Action Lawsuit under RICO (Racketeer Influence and Corrupt Organization Act) against the agency head or heads. It broad scope for discovery would rip open the NIH, HHS, IOM and the CDC activities over the last few years and their connectios to the health industry.
An alignment with a legal nonprofit organizations that have brought action against the IOM and other Federal agencies in the past which I posted about a month ago but was totally ignored is the only option at this stage to stop this process. There is no other way to force HHS to change their stance. You need to have the political will and the powerful alliances arrayed against HHS, you have neither.
The action of the HHS is a signal that this Auschwitz style contract is nothing more than a IOM death panel for the ME/CFS patients resulting in the inhumane treatment to the point of genocide on a patient community.
https://tinyurl.com/pm9em3l
The clock is ticking and if you do not begin to initiate contacts and begin the process, kickstart a legal fund. This cause is lost. It's just that simple.
HHS can calculate by the numbers the amount of patients opposed and those who support the contract. The winners will be the powerful medical/disability/health insurance industry and the powerful APA. $400 million dollars of lobbying by this sector, you would assume they would pass legislation favorable to these groups since much of their money also goes to special PAC/SIG to help fund the reelection campaigns of those in Congress and the President. They do expect payback for all that money?
The question is what are you going to do about it? Just more Crickets...??