CFSCC REPORT
By Jill McLaughlin

The US Chronic Fatigue Syndrome Coordinating Committee (CFSCC) met with officials 
from CDC (Centers of Disease Control and Prevention) and the Inspector General’s (IG) 
office on July 26 to address the CDC’s mismanagement of ME research funds. The meeting was chaired by Dr. Nicole Lurie, principal deputy to Surgeon General David Satcher. In an opening statement, the CDC admitted to diverting millions of dollars of federal funds  appropriated by Congress for ME research to other areas unrelated to the illness and then lying about it to Congress. Martha Katz, deputy director for Policy and  Legislation at the CDC, stated, “Resources intended for CFS research were actually used  for measles, polio, and other disease areas. This was a breach of CDC’s solemn trust and  is in direct conflict with its core values.” The IG’s report went on to say that “CDC officials provided inaccurate information to  Congress regarding the use of CFS funds, and have not supported the CFS program to the extent recommended and encouraged by Congress.” IG auditor Jeffrey Bullock stated that CDC used CFIDS/ME funds to “balance the books at the end of the year.” Dr. William Reeves of the CDC reported that since making charges of fiscal misconduct  and filing for  protection under the Whistleblower Act, he has  experienced retaliatory actions by the CDC. He has filed a lawsuit against the CDC  (reportedly asking for $300,000) but continues to lead the CFIDS/ME studies for the  agency. The Committee made the following  recommendations, which will be sent to Secretary Shalala: Reinstate the 12.9 million misused between fiscal year 1995-1998 over the course of the  next four years (2000-2003). Require the CDC’s Office of the Director to oversee the CFS program’s budget and implementation of these programs for the next four fiscal years and that the operating plan  and subsequent quarterly reports be given to Congress and the CFSCC. Keep the CFS program within the Division of Viral and Rickettsial Diseases while 
dialogue and plans for the future of the CFS program at CDC continue. Direct restored funds to be used for public education programs with an emphasis on public service announcements and specialized  efforts to educate  primary care providers about CFS. Support a General Accounting Office (GAO) study to expand the IG’s audit by conducting a review of the track record and course of CFS research at CDC and NIH. Kim Kenney, executive director of the CFIDS Association of America (CAA) asked if the reason that this happened was that CDC does not take CFS  seriously. This question was not adequately addressed (although it is on the record that she asked.) One of the CDC representatives interjected that he knew of no one at CDC who did not take CFS seriously, but then said there were “no good leads.” Dr. Klimas shot  him down on that comment and later asked that the committee’s outrage be entered into 
the record. Heiman made a motion to extend some oversight authority of the CDC and NIH to the  CFSCC, but that motion was tabled to be discussed at another time, and Kim Kenney offered no support for this. The Committee maintains that there was no criminal  wrongdoing. Ostensibly due to the nature of the meeting and the amount of business that  needed to be conducted, no comments from the public (including the NCF) were allowed.  The meeting was scheduled until 5, but ended before 4:30. Why we find the CFSCC’s recommendations unacceptable: We at NCF maintain that the CDC’s response and the Committee’s recommendations are inadequate  and unacceptable. The CFSCC accepted the restoration of funds, changes in accounting procedures and a  probationary period of financial review as an acceptable solution. Kim Kenney voiced no objection and no one other than Committee members were allowed to comment. These proposals are at best Band-Aid solutions to festering wounds. Dr. Reeves was clear in his original statement that this misuse of funds was not “a simple accounting artifact or  oversight due to lack of  information” but rather was done deliberately. This fiscal misconduct is representative of the underlying issues which allowed this to happen in  the first place. As long as we continue to mask the problems underlying the real issues, nothing will change.Even if the essence of this crisis was a simple funding snafu, the proposed solution is deplorable. The misused funding is to be restored  over a four-year  period. Money that should have been spent on essential research in 1995 will not be available until the year 2003. Considering the time it takes to translate research findings  into workable clinical solutions, this is an eternity.

Although the IG’s report detailed the negligence and gross malfeasance of the CDC from 
1995-1998, there is abundant, well-documented evidence that  this conduct has been problematic since the inception  of CDC’s CFIDS/ME programs. CDC has never demonstrated the ability or willingness to lead or  properly administer the CFIDS/ME program. The CDC administrators are loath to spend CFIDS/ME research money in any way that would effectively advance the discovery process. CDC still cannot say how many people  have CFS, what causes it, or how it is transmitted. They have provided no useful  information to the medical community regarding diagnosis and treatment nor worthwhile epidemiological studies so that public health officials could implement strategies and programs to contain and eliminate this disease. Although the Committee readily accepted the  decision that there was no criminal wrongdoing, the Federal Perjury Statute of Title 18,  US section 1621 clearly states that lying to Congress is a crime subject to criminal  prosecution and carries a punishment of five years imprisonment or a $2,000 fine, or both. In this case, considering that the CDC’s transgressions have resulted in incalculable pain  and suffering, destruction of lives and even the loss of lives, this  punishment is far too lenient.
CDC’s director, Dr. Jeffrey Koplan, called the NCF prior to this meeting to “apologize” for his agency’s wrongdoing. He was careful to say that he was not the director at that time. Dr. Koplan wasn’t sorry enough to attend the meeting and neither was Surgeon General David Satcher who was in the director’s  position at that time. Dr. Satcher is now the chair of the CFSCC, although he rarely  attends meetings.

We sent a letter and fax to Dr. Koplan explaining that his apology was appreciated, but by itself insufficient. He was informed of the points mentioned above and reminded of the CDC’s bias which is obvious, even today. We asked for outside, independent overseers, experts with no federal ties, to revise the current, poorly written “factbook” on ME and to oversee future activities of the agency regarding ME. We also asked for an immediate and full restoration of all misspent funds. Dr. Koplan was told that our organization would persist until a  satisfactory agreement can be reached. The public trust is fragile, while the weak, sick, and  powerless continue to be undermined.

The GAO petition that was in our last newsletter has extended the time to the end of this current year. Please get all the signatures you can. If you need extra copies, send your request into the NCF office. 

The petition can also be accessed online at http://www.co-cure.org/gao.htm. Your participation is urgently needed. Many other groups are supporting this effort except, to date, the CAA. Thank you for helping! And a special thank you to all those physicians around the country who have agreed to post this petition in their waiting rooms.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606