Response and Thank You for Interview with Mindy Kitei
Dear Prof. Lipkin,
I write regarding the interview you did with Mindy Kitei recently. Thank you. I found it very informative.
I have had ME and Lyme for about 12 years.
I am very thankful that you are working hard for us, taking an interest in ME science and trying to drum up support!
I realize you know Drs. Fauci and Collins, so I apologize for having to speak the following unflattering words about them; I do not want to cause you grief or annoyance. But I must tell it like it is; this subject is too important.
I agree that the ME community needs to increase it's efforts in lobbying Congress, but mostly because NIH and CDC are the enemies of ME science, and we need their bosses (Congress) to force Drs. Fauci, Collins and Unger to do their jobs.
I agree we need some sort of Congressionally mandated research fund/body for ME like Gulf War Illness has, because NIH and CDC can not be trusted with the money.
NIH still claims it only gives a few $Million for ME research annually purely because of the lack of grant proposals of acceptable quality submitted. However, NIH's biased rejection of preeminent scientists' grant proposal is obvious. From the very beginning this has happened to the likes of Profs. Jay Levy, Seymour Grufferman and many others and now it has happened to you. You protested the biased reviewer being on the panel and for 'reasons not clear' to you, the reviewer lo and behold showed up on the second panel to again reject your grant because "CFS" is psychosomatic according to the reviewer.
Dr. Fauci came to you with $2M to 'de-discover' (your words) XMRV's association with ME. But now Drs. Fauci and Collins, though they supposedly would love to do biomedical research on ME, just can't come up with money to give to you or anyone else trying to do it! Dr. Unger still supports the ludicrous Reeves Criteria for "CFS" and has been continuing to do studies using it as the definition of "CFS!"
Prof. Lipkin, I must be blunt: is it possible you have been deceived by Drs. Fauci, Collins, Unger et al.?
With all due respect, and much is due, you haven't even read Osler's Web and you are saying the at least some of the reporting in it is not accurate. PLEASE read Osler's Web, or if you do not have the time, please take it from the experts in the political history of ME, that CDC and NIH have been waging a war on ME science and patients for 30 years and show no signs of slowing down.
To give one of many many examples, patients complained about the atrocious behavior of Stephen Straus, MD, who was a protege of Dr. Fauci and the only person ever assigned full-time to "CFS" at NIH, to a Member of Congress who was sympathetic to us, John Conyers. According to Osler's Web, Dr. Fauci paid a visit to Rep. Conyers and told him in strong terms to back off. According to Osler's Web, Members of Congress are typically extremely deferential to Dr. Fauci and in this case Rep. Conyers was and did back off.
You are right that we need healthy people to lobby for us because we are too sick and bereft of money and social capital to do so effectively. A main reason we are in this situation of being so battered down is because of CDC's and NIH's war on ME patients.
Columbia's School of Public Health has a proud, ongoing and prominent tradition of being sensitive and promoting the public health of underserved and vulnerable populations. Please, please make the case to Dean Fried and whoever else necessary to please put their money where their mouths are and help us. It would be one of the best bangs for their buck in terms of furthering American public health.
Another request is that you consider calling the disease ME or ME ("cfs") since CFS is a harmful name.
I know you are incredibly busy, but I would appreciate your acknowledging that you have read this email and will consider it. Of course I would love to speak with you about these topics, but understand that may not be possible due to your very busy schedule. Thank you for your time.
Sincerely,
Justin Reilly, esq.