After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion in scientific conversation is not an endorsement,” and so little is known “that inclusivity of scientific thought will be critical to our success.”
“[I]nclusivity of scientific thought” does not typically include hypotheses that have been disproven. NIH does not invite HIV denialists and anti-vaxxers as speakers because they add no value to NIH’s work. So if NIH is making sure an opinion is included in the conversation, then NIH has made a judgment that the opinion is worth thinking about. Extending an invitation to Dr. Edward Shorter means that NIH expects he will say something relevant to its work.
To which I say: Enough.
Reams of data and peer reviewed papers have confirmed what patients have always known: ME/CFS is not a psychological disorder. The Agency for Healthcare Research and Quality, the National Academy of Medicine and NIH’s own P2P Panel concurred.
It is past time to discard the psychogenic myths of CFS’s past, once and for all.
Enough. Is. Enough.
I do not accept that outdated views, disproven by more recent work, should be included in the scientific conversation. My health and my life are worth more than that. I demand rigor. I demand data. I deserve quality science, not dusty old-fashioned prejudice.
I do not accept being dismissed, belittled or disrespected. I will not be manipulated into believing that my reality is not real.
People with ME/CFS are not delusional somatizers. The National Academy of Medicine (IOM) report was not junk science. Militant advocates did not hijack the committee. People with ME/CFS have not obsessed their way into disability.
Until the National Institutes of Health – as an institution and as a collection of individuals – sees this truth of the matter, there is nothing more to say.