Email Away -Keep Beating that Drum
Grant: GOOD! Keep them on their toes and keep asking. We need to make sure that the CDC/DHHS etc. are aware that we are paying attention and ready to leap.
Apparently Harry Reid (Senator, Nevada) is a good friend of the Whittemore family. I would bet that Mrs. Whittemore has kept the Senator well informed about CFIDS/XMRV and the WPI mission. But it would not hurt to contact him. I also contacted him several years ago. The CAA has also involved Senator Reid in trying to get the CDC to answer questions on funding, etc. See below from the CAA website -
http://www.cfids.org/cfidslink/2009/050607.asp
"asked for a Congressional inquiry into program direction and funding accountability through a letter sent to Senate Majority Leader Harry Reid and other influential members of Senate and House in March 2008:
“Senator Reid, we deeply appreciate your tireless advocacy in support of the CFS patient community and we know that you are committed to assisting us in fulfilling the promise of better diagnostics and therapeutic approaches to reduce the significant burden of illness posed by CFS. Your immediate assistance in helping us determine the state of the CFS program at CDC and restore its promise would be incredibly important and hopefully will lead to improved transparency, accountability and performance. “
"Senator Reid forwarded our letter to then-CDC director Dr. Julie Gerberding and she responded with a promise to look into the matter. A meeting held in Senator Reid’s office on June 7, 2008 with Miller, Monroe, Wiley and two DC-based CDC staffers gave us the opportunity to directly state our concerns and to ask some of the questions the Association had submitted in response to a written update circulated by CDC at the May 2008 CFS Advisory Committee meeting. They promised regular updates and a complete accounting of the CDC’s expenditures between 2005-2008."
A series of conference calls over the 2008 summer and into early fall continued the dialogue and provided additional opportunities to continuously reinforce our message about the need for reforming the program. We closely examined the expenditures CDC reported and were given descriptions of the activities supported, although CDC staff didn’t seem concerned by the lack of outcomes for the millions that had been spent and obligated to the program. At the October 2008 CFS Advisory Committee meeting, I went “public” with these concerns and advisory committee members recorded theirs as well.
As scheduled, two weeks later CDC convened a long-overdue external peer review of its program. The participants were selected from lists of candidates submitted by the Association, the CFSAC and others earlier that spring; however, only five reviewers were chosen and one was unable to attend. Based solely on the report issued after the review, material presented to them must have focused on past work over a 10-year period since the prior peer review in 1999, rather than more recent past or planned studies. This surprisingly positive endorsement of CDC’s program was used by CDC to inoculate other criticism, and at that point, the focus shifted to developing a five-year plan, as the reviewers recommended.
The November 2008 election brought opportunities to engage new leaders in the dialogue, but delays in confirming a new Secretary of Health that meant a new CDC director might not be appointed for months after the election. Early in the new administration, the Association sent a letter to Monroe on February 10 citing President Obama’s directive to enhance data sharing and transparency:
"The data amassed by the CDC CFS Research program is a valuable resource that must be released and shared in accordance with the CDC/ATSDR Policy on Releasing and Sharing Data and the President’s memorandum dated January 21, 2009 that directs all executive agencies to ‘take appropriate action, consistent with law and policy, to disclose information rapidly in forms that the public can readily find and use.’ By releasing the data in accordance with these policies, you are ensuring it will be used to its full potential, that work is not duplicated, and that funds are not spent unnecessarily"
While waiting for the dust to settle after Senator Daschle withdrew from consideration as Secretary of Health, on March 11, 2009 the Association sent a heavily footnoted seven-page memo to acting CDC director Dr. Besser, describing the history of CDC’s engagement in CFS research and our recommendations for corrective measures.
"…progress toward understanding CFS as a chronic condition with multiple triggering and perpetuating factors has stalled and the lack of program staff’s experience in dealing with chronic conditions, particularly in establishing and maintaining the type and variety of partnerships and collaborations recognized as being critical to the study of chronic conditions, is undoubtedly one of the essential elements currently missing from the agency’s approach to CFS."
We also provided this information to Congressional appropriators and shared concerns that CDC was developing its five-year plan without including a process for obtaining stakeholder input. (Dr. Besser responded on April 22, conveying his assurances that CDC is “committed to supporting a rigorous research program on CFS and to address the requests and concerns of your organization and others.”)
A month after receiving our memo to Dr. Besser, the April 27 meeting was announced. The lack of a planning document to examine and respond to left us feeling that the meeting was likely to erupt into a full-blown “gripe” session, especially with the immediate frustration expressed by advocates for the late notice of the date, lack of accessibility, and absence of an agenda and a report draft. We asked CDC leaders to broaden access and helped circulate notices to encourage participation, hoping that CDC would hear from a broad segment of its constituency. The meeting date was also the deadline for one of the NIH mechanisms to apply for funds available under the Recovery Act, so we knew this would limit participation from the scientific community, but hoped they might respond if the deadline was extended. CDC accepted input until May 1, 2009." END.
-->>>Maybe if enough people ask Senator Reid to request a full investigation into the CDC's CFS program funding AGAIN, it might help push the request forward. I think what we would all like to see is William Reeves and others sitting in front of Congress in the hot seat being grilled on all the issues that have been around for decades and never seem to be truthfully answered or changed. We would all like an accounting of where the $100/$150 Million has gone and what the CDC has to show for that money. In addition to the funding issue there are other questions that I would love to have answered such as why Reeves and those before him neglected a true epidemic and instead, turned CFIDS into a psychological disorder that mocks and demeans millions of sick. Did someone instruct them to stay in this direction despite all evidence to the contrary? Why didn't they do real scientific research? Were they afraid to do real research since it would have opened up a can of worms much like the two Retroviruses (Possible Defrietas Retrovirus and the WPI XMRV Retrovirus) and this could not be allowed for some reason? Why didn't they keep track of the real numbers instead of playing all sorts of games to keep the real extent of the sick from being known (so that the public didn't realize the severity of this disease and to appease the insurance industry and
others). Why was the DeFreitas Retrovirus study damaged by the CDC and then killed off? WHO made this decision? Who/why/how was the insurance industry involved in CDC/CFS program decisions? And the list of really serious questions goes on. People like Hillary Johnson, Mary Schweitzer and Erik Johnson would be great to have due to their backgrounds and ability to probe and question in the really critical areas. Ditto for some of the CFIDS experts/physicians who would understand the complex and interrelated medical underpinnings that have caused extreme damage to our bodies and brains.
I can't help but believe that the damage done to CFIDS research/validation by the CDC and other Federal health orgs was due to the impact of the insurance companies alone. Or that Reeves and his UK counterparts really believe that CFIDS/ME is a psychological disease. I do believe that our government (civilian and/or military) screwed something up badly and have since tried to cover it up for the last three decades and Reeves and others have played their roles in keeping it all secret. Look at the UK document that has been closed for the next 83 years. Why locked down so long? So that those involved and those that suffered are long dead before it is known what really happened and where CFIDS/ME and maybe the Retroviruses (and/or other pathogens) came from?
So go ahead and email Senator Reid. Email ALL the Congress people and give a brief overview of CFIDS, CDC negligence, etc. and request a formal investigation. It is time we know what the real truth about CFIDS/ME.
