TESTIMONY BEFORE THE U.S. HOUSE COMMITTEE ON APPROPRIATIONS
              SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES,
                        EDUCATION AND RELATED AGENCIES

                          JANUARY 28, 1998   10 A.M.

Witness:  ROGER BURNS
          Publisher, CFS-NEWS Electronic Newsletter
          2800 Quebec Street N.W., Suite 1242
          Washington, DC 20008-1240

          estimated readership:  over 10,000

Telephone:      (202) 966-8738
E-mail:         CFS-NEWS@MAELSTROM.STJOHNS.EDU
Internet web:   http://www.cfs-news.org

         A COPY OF THIS TESTIMONY IS AVAILABLE ON THE INTERNET AT THE
       FOLLOWING WEB ADDRESS:  http://www.cfs-news.org/name-98.htm

 DISCLOSURE:  I have never received monies from federal grants or contracts.

                 -------------------------------------------

                       CURRICULUM VITAE FOR ROGER BURNS

Academic Degree:  M.A. in Economics, 1982, State Univ. of N.Y. at Stony Brook

Positions held:

          Publisher, CFS-NEWS Electronic Newsletter, 1992-current
          Economist, 1983-94, U.S. Bureau of Labor Statistics
          Tax examiner, 1973-4, U.S. Dept. of the Treasury

Publications:

   "Change the Name Forum", CFIDS Chronicle, Winter 1997
   "Billion Dollar Disease", CFIDS Chronicle, Summer 1995
   "Johns Hopkins Research May Hold Promise for PWCs",
     CFIDS Chronicle, Spring 1995
   Sixty-eight editions of the CFS-NEWS Electronic Newsletter, since 1992
   Numerous articles on U.S. inflation analysis which appeared
     in the Monthly Labor Review, 1984-1992

held elected office as Advisory Neighborhood Commissioner, District of Columbia, 1987-93; invited speaker, N.I.H. Workshop on Clinical Management of CFS, May 1995; Founder and Group Manager, Internet discussion groups on CFS, 1992-current; D.C. Comprehensive Plan Ward 3 Citizens Advisory Committee, 1986; Mayor's Advisory Committee on Finances and Taxes, 1988-89; Ward 3 ANC Redistricting Task Force D.C., 1991; recognized by a resolution of the City Council the District of Columbia for work on the Ward 3 ANC Redistricting Task Force, April 7, 1992; President, Quebec House Tenants Association, 1987-90; Founder, Save Our Supermarket Committee of Cleveland Park, Sept. 1987

Mr. Chairman and distinguished members:

My name is Roger Burns and I publish a widely read newsletter on the topic of chronic fatigue syndrome (CFS). I am also a leader in the effort to change the name of this illness. I will today make some recommendations to you about the name-change issue, which has been a policy interest of your Committee.

As many of you are aware, there is a strong stigma associated with the name "chronic fatigue syndrome". Outdated science reports have in the past prompted misinformed notions of "it is all their minds", etc. on the part of the public, employers, disability insurers, and by all too many medical professionals, despite recent scientific research that underscores the seriousness of this disease. This stigma adds greatly to the disruption of the patients' lives, often obstructing the delivery of needed medical care, interfering with the ability to collect merited insurance claims, and disrupting family life. Sadly, the scientific knowledge that has been accumulated which does validate this emerging illness has been disseminating very slowly to the general medical community and to the public.

I issued a survey last year to CFS patients about the change-the-name issue, which was graciously co-published by the CFIDS Association of America. The results from 668 respondents showed that over ninety (90) percent of those responding want the current name to be replaced, and that many specific alternatives were deemed suitable to overcome the stigma of the current name.

Many CFS patients are grateful that your Committee's report for FY 97 asked the HHS Secretary to, and I quote, "convene a committee for the purpose of examining [the name-change] issue and to report back within six months of the bill's enactment with recommendations for a new scientific name or eponym that more appropriately describes the illness known as chronic fatigue syndrome."

Those scientists who are the most familiar with CFS do say openly at their medical conferences that they now know this is a serious illness. But this current state of knowledge is not yet widely understood by most doctors. What better vehicle could there be to help eradicate the stigma of CFS than for the Dept. of HHS to hold a press conference to declare that "We now know, given a decade of accumulated evidence, that CFS can be a very serious illness, and to underscore our new knowledge, we are changing the name of this illness"?

To fulfill the request of this Appropriations Committee, the HHS Secretary has delegated the name-change issue to her CFS Coordinating Committee which, however, voted at its October 22, 1997 meeting to postpone indefinitely any change of name until such time as more scientific evidence might appear to justify the choosing of a wholly new physiologic-based name. That committee then disbanded its working group on this topic.

The CFS Coordinating Committee's public discussion gave little attention to already-established alternative names already used in scientific literature for referring to this illness, nor to the possibility that an eponym might be chosen. In short, the most difficult option was focused on. The committee did not discuss the stigma of the current name and its burden on the patients -- which was the original reason for calling for a change of name. In addition, public testimony was excluded until the end of the meeting when the decision to suspend the name-change issue had already been made.

I believe there are two reasons why the CFS Coordinating Committee suspended the name-change issue:

(1) There was no permanent Assistant Secretary for Health during 1997 when the Coordinating Committee took up this issue. (The Assistant Secretary for Health chairs the CFS Coordinating Committee.) Therefore there was not sufficient leadership within that committee to ensure that the name-change was given a complete hearing.

(2) None of the scientists who serve on the CFS Coordinating Committee can afford, as individuals, to recommend a specific alternative name. These scientists are already putting their careers at great risk by focusing their research on CFS. They could be throwing away their careers by becoming any more prominent in this field than they already are. That is right -- scientists who study CFS are stigmatized by other scientists.

With these facts in mind, I recommend the following steps to the Appropriations Committee:

(A) When the new Assistant Secretary for Health is in place, it will be very important to sensitize that official to the needs of the CFS community, and about the name-change/stigma issue in particular. The only way to make deliberate progress in legitimizing this disease is to have leadership from some official who has the respect of the research community, but who also is independent enough that their personal career does not depend on getting published as a researcher. The ideal official for this task would be the Assistant Secretary for Health. Please help to motivate and sensitize the new Assistant Secretary when you discuss HHS matters with him in his appearance before this Committee later this year. For our part, those of us in the CFS community will work to educate the new Assistant Secretary about these issues in detail.

(B) The CFS Coordinating Committee is truly incapable of recommending any alternative name in the foreseeable future, because that committee is comprised largely of government bureaucrats and vulnerable researchers none of whom can afford to recommend anything that might be perceived as too innovative in this politicized field -- even merely changing the name of this illness. Yet some participation by scientists will be essential in giving credibility to the recommendations of a name-change panel.

Therefore, it would be most helpful if the Appropriations Committee were to renew its call for a new name or eponym, and to ask the HHS Secretary to appoint a "committee or a workshop or a forum" that would include not only scientists but also general practitioners of medicine, and patients who are advocating a change of name for the illness.

I thank you for your attention.