Wednesday, July 7, 2010

"Dear Sirs: I am SICK"


The NIH press officer says he hopes to have an answer for me ASAP.  I emailed him yesterday about getting a statement from the HHS officials who put the hold on the FDA/NIH paper.

I also wrote a post that Blogger consumed.  Poof.  Basically, I answered many of the questions people posted yesterday.  One of the most important concerns was voiced by Cinderkeys: the use of anonymous sources on CFS Central.  Of course, it's always better when people go on the record.  However, my sources are credible or I wouldn't be reporting on what they're saying.

Several patients also wrote asking what they could do to effect change.  As many of you know, in 1996, the publisher and a reporter at the New York Native newspaper contacted New York Congressman Jerrold Nadler about the CDC’s financial improprieties where ME/CFS was concerned.  Their action  led to a congressional investigation that proved that CDC scientists siphoned millions of Congress-appropriated ME/CFS dollars to what then-CDC director Jeffrey Koplan told the Washington Post were "more important" maladies, including measles and polio. 

The New York Native learned about these abuses by reading Osler's Web, Hillary Johnson's landmark book about years of governmental neglect and abuse of ME/CFS patients.  Dismissing the disease as a trivial and psychogenic problem, the CDC had such disdain for patients that it even concocted, Hillary Johnson wrote, a letter from a phony patient "I. M. Zappode," which began, "Dear Sirs: I am SICK.... I am so tired it took me 6 days to dictate this letter to my secretary. Please send me all available information and I mean ALL about CEBV, CMV, HSV, VZV, HPV, HTLV III/LAV/HIV, RSV, HAV, HBV, SV40...." The bogus letter went on like that.

Nadler still represents New York, but if enough patients write in, what senator or congressman wouldn't be interested in the safety of the blood supply?

Patients who contracted ME/CFS after a blood transfusion, please contact me, as I'm doing a post about it:  Mindy Kitei CFS Central

To read more about the 1996 congressional inquiry: 
http://oslersweb.com/newsletter.htm
To read the "I. M. Zappode" letter, scroll down on that page to "I am sick."

5 comments:

  1. Thanks Mindy hope you feel better soon. I wouldn't be surprised if the CDC is still misappropriating funds (maybe with the kind of research they turn out on this particular subject it is a plus).

    My impression is that scientists often consider people like congressmen etc. to be idiots and just playing to their constituencies.

    This is a problem to be overcome since if Congress gets the Executive to make changes to these institutes' policy, or sets up new law for using research money, these changes are probably not implemented to a great extent at the ground level.

    ReplyDelete
  2. Our elected officials should be interested in protecting he blood supply, but I don't seem to be able to get their attention to this problem. I'm hoping that columns like yours will help.

    Patricia Carter

    ReplyDelete
  3. They never wanted funds to be allocated to studying CFS so put our funds into other illnesses and now they put our funds into an bogus "CFS".

    When will ME/CFIDS ever be studied for the illness it actually is, instead of wasting funds on tired and depressed people or other things eg psychological studies

    When will the day come when we actually get our funds and get to use them sensibly.

    taniaaust1

    ReplyDelete
  4. Sorry your post got eaten. For the record, I'd rather read information from anonymous sources than get no information. And obviously, if you were to reveal your anonymous sources after promising confidentiality, you wouldn't have any anymore.

    My frustration is that I'm trying to explain why I suspect shenanigans to healthy people who are unfamiliar with the history. If no one goes on the record, all of this stays in the realm of conspiracy theory as far as they're concerned.

    ReplyDelete
  5. Before submitting text to blogger or anything online, I 'select' all the text, and then right-click Copy it. Then if things go Poof, I just Paste the text back into the box. Sometimes, I also Paste into a text document to keep a separate copy. Hope that helps.

    Keep up the good work. I didn't know the New York Native story. Yep, I gotta learn how to write to my political representatives. It's probably key to the effective use of my energies.

    ReplyDelete

Comments are welcome and moderated for appropriate content.