What can be done to
change the name "CFS"

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SPECIAL UPDATE:     I have become discouraged about the name-change issue since my private poll of scientists in 1999 has revealed a strong indifference by them to any proposal for changing the name. I discuss this in an editorial which can be read here.

I leave the text below unchanged, as written years ago in a more naive time.

-- Roger Burns, June 2000

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September 1998

How Can We Change the Name?

The name chronic fatigue syndrome was officially chosen by scientists in 1988; at that time many of us had a sense that a research breakthrough -- and a better name -- was just around the corner. Ten years later the name is still with us. Most scientists oppose changing the name until the disease process is better understood or the cause is found. However, I believe there are ways to promote a change now.

The CFS community could promote one of the less controversial alternative names already in use, such as a variant of "M.E." Another possibility is to promote an eponym (i.e., naming the illness after a well-known person) to be used along with the scientific name in medical literature. There are more than 100 diseases which have both a scientific name and an eponym. For example, amyotrophic lateral sclerosis (ALS) is also widely known as Lou Gehrig's disease and paralysis agitans is better known as Parkinson's disease.

Either an already-accepted name or an eponym could meet the urgent needs of the patient community about this issue, and should not prompt major objections from scientists which could impede any patient-led campaign to change the name. We should also urge scientists to consider officially adopting an eponym themselves or to pick a new scientific name which more appropriately describes the symptoms than CFS does. Either of these options would be a real change for the patients, yet would avoid prematurely identifying a pathology which scientists would clearly object to.

Current steps

The current name-change effort has run into many difficulties, as described in detail in CFS-NEWS #75. But new opportunities may arise from the AACFS medical conference being held on October 10-12, and from the U.S. government CFS Coordinating Committee meeting being held immediately thereafter. Further news will be posted here after those conferences.

C.A.A. Survey

One of the difficulties in the name-change process has been a controversial report by the CFIDS Association of America (C.A.A.) which claims that the patient community is so strongly disatisfied with the eponym option that if it were the only alternative, they would instead prefer to keep the name "chronic fatigue syndrome". This claim was based on a survey that was only partially released to the public by C.A.A.

This claim seems to contradict what many patients are discussing among themselves. Therefore, the CFS-NEWS newsletter issued a second survey to clarify the issue. The results showed that by a three-to-one margin, patients would prefer an eponym over keeping the name "chronic fatigue syndrome" if indeed an eponym were the only available alternative.

Furthermore, C.A.A. has recently released the details of its own survey which do not seem to support the conclusion they had announced in public.

The C.A.A. survey can be seen at

http://www.cfids.org/chronicle/97summer/survey.html

A summary of its conclusions was included in an article called "Rename it?", published in the Summer '97 CFIDS Chronicle.

The key survey question that related to an eponym, and its results, were as follows:

  Should the new name:                                    Number   (percent)

     Be descriptive of the symptoms of the illness:         24      (20.0%)
                                                            
     Reflect the scientific                                 44      (36.7%)
     understanding of the illness: 
                                                             
     Both of the above:                                      7      (5.8%)
                                                          
     Use the name of a person who is closely and            13      (10.8%)
     publicly associated with the illness: 

There were no responses indicated from another 32 people (26.7%).

The question was asked in the manner of "What kind of new name would you most like to see?". And given that interpretation, most patients would not be surprised to see the results as indicated above.

However, the information was presented to the government committee as though it were saying "No more than 10.8 percent of patients are willing to see an eponym adopted -- all of the rest would rather see 'CFS' kept in place than have an eponym." Thus, the facts were distorted and the most viable option for a near-term change of name was quashed.

The actual survey results as shown above were not inconsistent with those of the second CFS-NEWS survey (see those results here). In that survey, 59.3% of patients wished to see an eponym adopted right away, compared to 23.1% who prefered for 'CFS' to be retained until a new scientific name could be chosen.

Aside from what C.A.A. reported at the government meeting, there is a difference between the raw CAA survey results and those of the second CFS-NEWS survey. Every specific eponym fared poorly in the CAA survey, in contrast to the CFS-NEWS survey. However, the CFS-NEWS survey had a much fuller explanation of each alternative, plus it made a clear case that if no alternatives were found acceptable through the survey, we might end up keeping the old name 'CFS'. The CAA survey did not explain that to the respondents.

For further news about these issues, you should regularly browse to the Change the Name News page, and follow the CFS-NEWS Electronic Newsletter by e-mail (for free subscription info, click here).

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