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The Ongoing Saga of the CDC's Use of CFS Research Funds


Letter from Byron Hyde, M.D. on CDC and NIH Issues
(Posted to the Co-Cure List on December 1, 1999)

Byron Hyde, M.D.
The Nightingale Research Foundation
121 Iona Street, Ottawa, Canada K1Y 3M1
Fax: (613) 729-0148 o E-mail: nightingale@nightingale.ca
See our web site at http://www.nightingale.ca

Gail Dahlen,(RN),
President, Co-Founder, Group Coordinator,
Medical Professionals/Persons with CFIDS-ME, Inc.

Dear Gail,

I have just read your letter and I know that you are, as many people are, critical of Stephen Straus and what you believe to be his apparent mis-management of the NIH funds for CFS. I am not at all sure it is as simple as that or even if the blame can be laid at or only at Straus' feet, since funding is probably a group decision. There is reasonable doubt that any one person is responsible for this funding tragedy in the CFS community. However, in the recent CNN talk in which a Mr. Kagan interviews Dr. William Reeves, previous head of the Government CFS laboratory, it is obvious that Dr. Reeves is very careful in his statements. Dr. Reeves carefully never identifies names, yet Mr. Kagan in the voice over quotes Dr. Reeves as having stated the following in regards to the diversion of NIH funds.

"He (Dr. Reeves) says he did so (blow the whistle) after a superior asked him to lie about how much money was going to CFS research."

Kagan quotes further Dr. Williams as blowing the whistle only.

"Not before CDC officials gave inaccurate and misleading information to Congress about how money was spent."

So if Mr. Kagan is accurately quoting Dr. Williams, then one person asked him to lie but several people at CDC lied to Congress. Who was the one person? Who were the several persons? What is the difference between NIH and CDC when referring to these individuals? Mr. Kagan and Dr. Williams carefully avoid these real questions. Possibly, Dr. Reeves only agreed to speak on CNN if he was not asked to identify those responsible. Do you have any definite knowledge of who the single person or the several persons were? These would have to be clear verified statements that have been made in the press or congressional committees or do you have trancgi-bin of this information? If not why has the press not asked these important and critical questions? It is clear to me, that if some of these questions are not asked now, then we will only repeat the previous errors. But let me discuss my knowledge of this question.

My Personal Knowledge of The CDC Diversion

I would like to clarify my knowledge of this apparent diversion of funds. I apologize in advance since I don't have the folder available any more although it is probably around somewhere. I also apologize for the fact that I do not have the precise terminology for the NIH departments.

When I first discovered this apparent NIH/CDC diversion of funds from the Congress approved funding for research into CFS it was by accident. It was some 5 years ago. I then discussed the problem of the NIH/CDC misinformation on funding with Hillary Johnson. This was just prior to her completing and publishing her magnificent Osler's Web in 1996. I don't know if she mentioned the fact about that information in her book. I know at the time she had so much information, that because of its potentially libelous nature, she could not print it. She also had material that her publisher's lawyers suggested she remove; perhaps it did not get into her excellent book. In the end her already long chronicle of injustices and stupidities in the world of M.E./CFS was much shorter.

The Atlanta CDC / NIH Symposium on CFS Definition

Up to 1993 NIH was stating that they had already spent 15 million dollars in ever increasing increments. Reputed funding, NIH figures, started in 1986 with approximately $400,000. There were reputed yearly increments, by 1988 the figure for that year was approximately 1 million. By 199o almost 2 million and by 1992 the figure had reputedly risen to 3 million. The figure in the year 1993 alone was approximately 3.8 million. I don't have the exact figures for 1994 but reputedly by the end of 1995 NIH spent over 25 million on CFS research. These figures were actually announced at the first symposium held in Atlanta concerning the second 1994 definition of CFS. I believe I stood up and questioned the woman giving the figures, an attractive fifty fivish administrator from NIH in Bethesda at the time and I asked for a breakdown. The breakdown never came. I don't have the total figures because after 1994 considerable more funds were placed into the pot. If my memory is correct the reputed total funds invested by the CDC in M.E./CFS research are up about 37 million plus or minus. You might wish to correct me on the exact amount.

Canadian Government Lack of Funding

As I mentioned, my enquiry started out simply as an accident. One day in 1994-5, I simply got angry with the Canadian Government and their lack of any serious funding on M.E./CFS research. So I determined to shame the Canadian Government for not funding research into the tens of thousands of Canadians ill with this terrible chronic illness or more specifically the CFS group of illnesses. . My plan was very simple, I determined to find exactly where NIH was spending the then 25-30 million government funds allotted to this program, and throw these figures in the face of the Canadian Government Health Department.

Openness of the NIH Accounts Departments

I simply phoned NIH central accounting and they told me that to obtain these figures would be no problem but that the funds were compartmentalized in NIH sub-departments. Dealing with the US government agencies was a treat. I know that you are often critical in the US of your government but the freedom of information legislation in the USA is no small miracle. The accounts official gave me a list of the sub-departments, their phone numbers and who to speak to in order to obtain the information that I wanted. He was totally courteous and extremely helpful and I am sorry I did not ask him his name.

The individuals in the sub-departments, such as the National Cancer Agency or Institute and the other agencies were equally helpful and seemed to be able to extract the data with great ease. I believe there were four, possibly five agencies at NIH to whom I was directed who had reputedly shared this multimillion-dollar windfall. I remember that one of these departments had only received minimal funds for travel or meetings but the other received major funds.

However, I was not prepared for what I was told. The different NIH agency accounting departments told me was that except for the present years grants that appeared to be going to CFS research there had been precious little actual research done on CFS and that the reputed funds were substantially paper funds, i.e. fictitious, as in paper profits.

Over and over again, I was told that an official at NIH had simply told them that all prior research done on EBV and HHV6 should be labeled as CFS research. Who was that official? They would not say. When I asked for copies of the titles of grants directed to EBV and HHV6 each of the accounting departments told me that they were routine research that had largely already been performed and none of them had anything to do with CFS. They were quite obliging and read of some of the titles and they were of such nature as sequencing of EBV codes etc. I can hardly believe that these accountants were inventing for a complete stranger. . The net opinion was obvious duplicity by the NIH agencies in charge of allotting these funds.

The Real Size of the Diversion

At that time of my inquiry in 1994-5 there was already a discrepancy of what appeared to be in excess of 20 million. It is possible that the NIH improved after that time and dedicated more actual funds to CFS. There were certainly more visible funds although the distribution of these funds appears to be curiously weighted to a small group of individuals who were not then in the CFS mainstream. Once the funding was given, irrespective of their prior knowledge or publications or even first hand knowledge of M.E./CFS patients, these grant recipient individuals became apparent mainstream.

In any case when I checked with the accounting departments of the various NIH departments much more than 8 million that you mention had been diverted even at that time. The department accounting subdepartaments were very frank about this diversion and at the time made no attempt to hide the subterfuge that had been perpetuated by the NIH officials at public meetings. Perhaps these officials also did not know the truth. If they did not they should have enquired as I did.

Validity of the Herpes Virus Theories of Cause

In my mind, perhaps one of the greatest problems was not simply that the funds were not paid out to legitimate CFS research, but that the distribution of the funds appears to have been directed by individuals who were largely associated with Herpes Virus research and consequently, a lot of the money that appears legitimate actually went to Herpes virus researchers, that I believe has little or nothing to do with the mainstream of CFS disease.

So in effect, if you look outside the purloining of funds, whether it is 8 million like you say, or over 20 million sifted away as it appears to me, you then enter into what can apparently be construed as legitimate CFS funding. But is it? Since so much money went to Herpes researchers, do those who give the money actually believe in the Herpes Virus connection or are they simply supporting yet another group of friendly associates. I believe this to be true. I question any of the Herpes research as associated with M.E./CFS. When you look at acute onset M.E. /CFS we know from the epidemics that the incubation period is 4-6 days, we know the incubation period for HHV6 is 12-14 days, we know the incubation period for EBV is circa 40 days. It does not require an Einstein to figure out that you then don't go and spend 15-25 million on EBV and HHV6. It takes about 5 minutes in the library to figure out that one.

Possible Racial and Religious Bias in the NIH Granting Mechanisms

Once again, what are the names of the different members who misdirected this funding? I would love to see the full list and from an anthropological-sociological base alone know what these individuals actually did in work and social life. I would like to know their clubs, university, race, colour and religious affiliations. There must be some clue since granting of funds for CFS research certainly does not appear to have been done on a scientific basis.

There is one other sad interpretation of the redistribution of this incredible massive amount of US Government research funds. With 20% of the US population being Afro-American and another 20% of the US population being Spanish American, I defy you to name a similar distribution of these NIH CFS funds. You might have difficulty in even finding a single Afro-American or Spanish American recipient. It is simply not good enough to infer that the majority of the good U.S. researchers belong to a single group. Is there also a racist policy operating in the NIH granting agencies?

I can speak quite openly about this since I have never applied for a grant and have never been dealt badly by the NIH. They have always been courteous to me, invited me to their meetings. But it is would appear from this icy northern Canadian distance that the NIH granting committee does have its friends and does have its enemies in the USA.

Is There NIH Obstruction in Publications on M.E./CFS?

Let me ask a few other questions: Should a senior member of the NIH granting body sit secretly on certain peer review medical journals such as the New England Journal of Medicine and others and refuse publications of CFS physicians who are not part of his "team"? It is my opinion that NIH officials should state on which peer revue journals they sit and hold influence.

Americans Should Shake Up the CDC Definition and Research Committees

Have you ever reviewed the physicians and researchers on the original 1988 CDC definition and counted how many of them actually had ever seen a significant number of CFS patients or had ever previously or after published on CFS? The number is not high. This improved in the 1994 definition committee but even then you may recall that this occurred only when I got up and criticized the chair for even attempting to put out another definition without a group of hands on US and international physicians on the committee. I think that got Dan Peterson on the list. Unfortunately the 94 definition was a rubber stamp of the 88 definition that has plagued physicians ever since. There were still too many members on that committee who simply rubber-stamped the previous group's work.

Name all of the serious original contributors to CFS knowledge in the past fifteen years and you may note the fact that their names are largely absent from the roster of NIH grant recipients.

Find me a single penny of NIH funds that has gone to autopsy research and tell me how many thousands of M.E./CFS patients who have died during this period, their brains and spinal cords lost to serious research.

Find me any serious ongoing funds dedicated by the NIH to any of the epidemic M.E./CFS situations that have occurred during the same period. Why were the strong epidemic features of M.E./CFS literally written out of the CDC definitions along with the known incubation periods of these epidemic illnesses at 4-6 days? Is it because this incubation period conflicts with EBV and HHV6 herpes virus incubation periods? You will recall that the incubation period of HHV6 is 12-14 days and that of EBV is roughly 40 days.

You asked me if you could reprint this information or circulate it. Yes you may. If anyone else is reprinting this letter, please include our website address and this paragraph and note that Nightingale is named after Florence Nightingale who fell ill with an illness that appears identical to acute onset M.E. /CFS. Also note that we are a charity that is operated by volunteers and we would just love a Christmas or Hanukkah or any charitable donation. Also mention our textbook, The Clinical and Scientific Basis of M.E. /CFS of which you speak so highly and which is available inexpensively at our website. Simply reprint this paragraph with your circulation.

Sincerely,

Byron Hyde M.D.
Nightingale Research Foundation
Ottawa Canada
Web Site: nightingale.ca

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CDC Timetable
by Pat Blankenship

This timetable of activities was handed out at the Oct. 13 CDC / CFS meeting. I did ask about it up at the very last minute, but it received no discussion.

CDC Timetable & Steps for Developing CFS Research and Program Plan
ActivityDate
1. Convene a Meeting of CFS Interest Community on Current and Future CFS Research / Program Plan Oct 13, 1999
2. Update CFSCC on the Status and Timetable for the External / Peer Review of the CFS Program and the Production of an Updated Research / Program Plan Nov 2, 1999
3. Update CDC OD on Research / Program PlanNLT Nov 12, 1999
4. Present Current Research / Program Plan to External / Peer Reviewers Nov 15-16, 1999
5. Present CFS Research / Program Plan and the Results of the External / Peer Review to NCID Board of Scientific Counselors Dec 2, 1999
6. Modify Research / Program Plan as NeededDec 15, 2000
7. Present Revised CFS Research / Program Plan to CDC ODJan 15, 2000
8. Present External Review Results and Updated Research / ProgramPlan to CFSCCNLT Feb 15, 2000
9. Review, Evaluate, and Modify CFS Program PlanOngoing
NOTE: CDC / NCID will continue to present program updates to the CFSCC on a regular basis and conduct periodic peer review of the program.

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