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All sides of the change-the-name issue -- patients, scientists and government officials -- seem to have some mistaken views of those whose opinions differ from their own. Such misimpressions can seriously obstruct a good resolution of this important issue. Regardless of this problem, there *are* effective ways in which progress can be made.

Below I describe the misunderstandings that I see as impeding progress on changing the name and ending the stigma of this illness. I conclude by outlining what next steps may be pursued to promote progress. After results have come in for the survey shown above, I will be recommending specific actions to the readers of this newsletter. Results and some recommendations will appear in the next CFS-NEWS, which should be published before the meeting of the U.S. CFS Coordinating Committee on April 29 which will take up the name-change issue.

Myths within the patient community

Myth #1 -- THERE IS NOTHING TO LOSE BY WAITING FOR THE MOST SCIENTIFIC NAME. Reality: There may be much to lose. Two points in particular:

(1) There are many patients for whom each day of continued rejection by doctors, family, threatened loss of job, etc. is a painful and severe disruption to their lives, and in some instances can lead to desperate measures.

(2) Many scientists are now discussing splitting up CFS into subgroups. This should be done and will make for better science. But some medical officials will insist that we then name and characterize each subgroup separately, and not try any further to legitimize or re-name the over-all category of CFS. Question: Will each subgroup be fully legitimized by the scientific community? Isn't it true that the sickest of the CFS patients are the most difficult to research, and will likely end up in some miscellaneous, psychiatrized category that will continue the old stigma, if not worsen it? It may be vital to address the stigma and the name-change now.

Myth #2 -- SCIENTISTS MAY CHOOSE A NEW PHYSIOLOGIC NAME RIGHT AWAY IF WE PUSH THEM HARD ENOUGH. Reality: Scientists have already stated that a new physiologic name must not be chosen until we have more scientific evidence than we have now, and they do not know when that will be. (See reports about last October's meeting of the U.S. CFS Coordinating Committee.)

Myth #3 -- RECENT IMPORTANT RESEARCH ABOUT CFS WILL SURELY PROMPT SCIENTISTS TO RE-NAME THIS ILLNESS VERY SOON. Reality: None of the recent impressive studies about CFS have been accepted widely enough to make scientists feel comfortable about moving forward with a name change in the foreseeable future. Doubts about the Suhadolnik marker were cast at the October '97 CFSCC meeting. Lerner's work on heart problems has not been confirmed by other researchers. The Streeten/Bell research on low blood volume was recently presented to the staff of the CDC who expressed disinterest in the work.

Myth #4 -- THE NEW VARIANT OF "M.E.", "MYALGIC ENCEPHALOPATHY", COULD BE WIDELY ADOPTED BY SCIENTISTS VERY SOON. Reality: scientists generally have not commented yet on "myalgic encephalopathy", so its prospects for rapid adoption are unknown. On the plus side, that name has already appeared in the scientific literature. But on the other hand, the fact that scientists have ruled out any physiologic name for the foreseeable future is not encouraging.

Myth #5 -- EFFORTS TO PUSH FOR A NAME-CHANGE MIGHT SERIOUSLY DETRACT FROM GETTING MORE RESEARCH FUNDING. Reality: Those who are the most involved in funding would play the least additional role in the name-change issue. There really isn't much competition for attention between the two efforts.

Funding for U.S. research is allocated by Congress and is spent by a grants committee within NIH. Congress is already on board with a name change, thus very little of their additional time need be spent to assist this effort. The NIH grants committee would play almost no role in a name change. Name issues are usually in the hands of the CDC, which itself plays no role in funding.

Myth #6 -- WE DON'T NEED THE COOPERATION OF SCIENTISTS TO GET THE NAME CHANGED. Reality: If there is to be any high-profile campaign to promote a new name for this illness, the cooperation of the scientific community will be absolutely essential. If a group of patients who have been accused of being psychiatric cases try en masse to declare their own new name, and then that announcement is countered by scientists and government officials when they are asked by the press to comment and they say that there is not enough evidence about CFS to warrant a new name, then our image could end up being worse than it was before. Prof. Showalter's disparaging view of CFS patients would then look quite correct.

Myth #7 -- IF THE PATIENTS CHOOSE THEIR OWN NEW NAME, THEY CAN FORCE THE SCIENTISTS TO ADOPT IT. Reality: There are two reasons why this won't work.

(1) Most scientists look down on CFS as a field of research. And all scientists' careers depend largely on their reputations among their professional peers. If some scientists are seen as "caving in to political pressure" about a scientific issue such as the proper choice of name for a disease, then they may be crippled in their future careers.

(2) Scientists have a lot of professional pride. If a group of 'civilians' attempts to micro-manage decisions that they should be making, they will be offended and likely will not cooperate.

I doubt that scientists will give in to a directive from outsiders to "choose the name that we have selected". Rather than risk their pride and their careers, they might sooner leave the field of CFS to study other diseases. The more effective request will be to get scientists to commit to some kind of name-change soon, and for them to accept patient input on what is to be avoided in a new name in order to be sure there won't be further stigmatization.

Myths among medical officials

Myth #1 -- EACH CFS PATIENT INSISTS THAT THERE BE A DIFFERENT NAME FOR THE ILLNESS, SO NO SOLUTION IS POSSIBLE. Reality: This is by no means clear, and the survey in this newsletter should go far to clarify the truth of this matter. The results of last year's CFS-NEWS survey showed that a great many alternative names were equally acceptable to the patients, much more so than keeping "CFS" in place. But those results have been misinterpreted by some to indicate that patients were each strongly insisting on their own favorite name, to the exclusion of all other options. The answers asked for in the current survey are structured so as to minimize that kind of misinterpretation.

Myth #2 -- EPONYMS HAVE ALMOST NO SUPPORT AMONG PATIENTS. Reality: A careful reading of last year's survey results shows that while eponyms were not among the patients highest choices, they were nonetheless largely preferred over keeping the name "CFS" intact. The current survey will make this issue more clear.

Myth #3 -- PATIENTS CLEARLY WANT TO WAIT UNTIL SCIENTISTS MAY CHOOSE A NEW PHYSIOLOGIC NAME FOR THE ILLNESS. Reality: There is no evidence that makes this clear, and a plethora of anecdotes suggest otherwise. The current survey should clarify this issue.

What can be done

It will be best to consider specific actions *after* we have seen what we are all thinking, as revealed in the results of the current survey.

If scientists and/or government officials will move soon on a program to change the name of the illness and to develop a campaign to overcome its stigma, it may be best to focus on drawing them along in such a program. If they will take no action in the foreseeable future, it may then be best for patients to develop a program that will do the most to end the stigma but that will also do the least to interfere with possible future decisions by scientists to change the name in a positive way.

The results of the current survey will appear on a web page at

http://www.cfs-news.org/results2.htm

and will be published in the next editions of this newsletter. Again I plan to publish initial results before the April 29 meeting of the U.S. CFS Coordinating Committee.

I will be making a presentation at that meeting and otherwise talking with government officials about these issues. The points I plan to raise will include the following:

- There is a possibility for compromise on the name-change since the most fundamental concern of patients does not really clash with that of scientists. The essential concern of patients is the stigma of the illness as it is experienced in society at large and from clinicians, rather than any preference for any specific new name. Whereas the scientists' essential need is that any new name that may be chosen must conform to their professional principles.

-- The U.S. government could help by adopting its own limited policy on a name-change, which it can do while still respecting the scientific community's need to choose a name that they use within their own professional sphere. The advantage of a government-only name is that it can be used in an educational campaign, and it need not be chosen through a long process of convening several scientific meetings. It's choice should, however, be guided by strong input from both scientists and name-change advocates.

-- The name-change process would benefit greatly by leadership from an independent official who has the respect of the medical community but whose career does not depend on getting his/her own research published, nor upon getting his/her research grant requests approved. We should look to the U.S. Surgeon-General to play an important role in this process. (In decades past, the U.S. Surgeon-General took the lead in announcing that smoking tobacco is bad for one's health -- a politically courageous action back at that time. This is the kind of help that the CFS community could use.)

-- The U.S. CFS Coordinating Committee seems to be burdened with many ongoing projects and may not be able to give the name-change issue the attention that it deserves. There needs to be a separate process that can handle this issue, and do so in a timely fashion. There should be a separate committee or forum that addresses the name-change, and it needs to include both scientists and name-change advocates.

For now, please respond to the survey. Again, it will be best to consider further actions *after* we have seen the results of the current survey. Interim results will be published before the April 29 meeting.

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This page is maintained by Roger Burns of Washington, D.C.
E-mail: cfs-news-request@maelstrom.stjohns.edu