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This is a revised version of an editorial that appeared in the CFS-NEWS Newsletter #91 on April 30, 2000. These comments are those of Roger Burns alone and do not represent the views of any group or individual.

Four years ago this month, I publicly joined the campaign to change the name "chronic fatigue syndrome". I now concede with regret that there will likely be no change of name in the foreseeable future.

I have consulted with many scientists in private regarding a name-change. Most CFS leaders have been wisely pessimistic about the possibility that scientists would endorse a name change at the current time. I will now say that my direct experience confirms that view.

While there seems to be signs of hope on the horizon at this time for a name-change, realistically no change of name will be effective without the backing of the scientific community. And for the most part, they are not supporting any change away from the current name.

Why do scientists' views differ so strongly from patients on this question? I offer some educated guesses.

Scientists usually think of name issues only in terms of scientific issues (of which there are many regarding the CFS name), while the patients' need for a change of name focuses on non-scientific reasons that medical professionals usually do not consider, and may not be considering in the case of CFS. Patients are trying to address the stigma and the lack of acceptance by the medical community, and see a change of name as an essential step towards any quick legitimization of the illness.

On the science side, there are several different schools of thought on what the true nature of CFS is likely to be. And there is no clear alternative name that both says "not all in the mind" (as the patients want) yet does not prematurely favor one school over the other. One emerging concept of the illness among some scientists, but not all, that relates to a new name is that CFS is "some kind of encephalopathy". However, scientists are years away from the possibility of having enough evidence to form a consensus behind that view, and its not clear that any consensus will end up with that concept. In addition, many scientists are "splitters", and they prefer that subgroups within CFS should be identified over time and each one ought to stand on its own. Thus, in their view, there is no reason to re-name the overall category of CFS.

Many patients feel that the illegitimacy of the illness is a dire emergency that requires immediate action and an overturning of "business as usual" with regard to how and when the name of this illness should change. Why don't scientists view the situation the same way, despite the urgings of the patient community?

One reason may be that scientists won't perceive any emergency unless they have seen it for themselves. That brings into play a possible "observation bias" -- that is, when scientists seek to verify by themselves that there are desperate situations, by the very fact that it is CFS-knowledgeable doctors who are doing the searching, any sense of desperation disappears in those few cases that are being examined since contact with any CFS-knowledgeable doctor instantly gives hope. Would that CFS-knowledgeable doctors could indeed contact and help every person who actually has the illness but has not been able to obtain a diagnosis.

There are some scientists who have contributed to educational campaigns about the illness and they are particularly aware of the progress that has been made on legitimization among those doctors whom they have contacted. On the other hand, patient leaders report continued problems in obtaining a diagnosis by many of those who appear to have the illness.

There are other scientists who are too intimidated by the mainstream mindset of viewing CFS as being all in the mind to do any more than they are already doing to stand for legitimization, such as by standing up for an immediate name change. And there are many who believe that CFS properly belongs in the psychiatric category, and may feel that while stigma about any psychiatric condition is inappropriate, there is no need for CFS to be accorded a special legitimization beyond what the other psychiatric conditions deserve.

At a more basic level, patients may well ponder: can healthy scientists really understand the Kafkaesque experience of trying to obtain a diagnosis when presenting what appears to be CFS? Many patient leaders have concluded that the failure by medical officialdom to respond to the stigma of this illness shows that "they just don't get it".

I note that the CDC will soon be revising the case definition once again, and the name issue will likely be touched upon there. In addition, a U.S. government committee is looking at the CFS name. However, in all likelihood these processes won't change the name of CFS unless a large number of scientists are backing such a move. And they aren't.

    Where do we go from here?

The fast track to legitimization seems infeasible without an immediate change of name. However, gradual efforts at legitimization do seem to be making some checkered progress. In the USA, it seems that a majority of media accounts about the illness that have been published since 1998 appear to be positive. And yet the bottom line remains -- can a patient who has CFS readily get a diagnosis when they present with the illness? That remains to be seen.

There have been recent attempts to reinvigorate the concept of myalgic encephalomyelitis, also known recently as myalgic encephalopathy. M.E. is officially recognized by the World Health Organization, and it is usually classified as a non-psychiatric illness (although the experience in Britain until very recently has belied that). In the USA, I'm afraid that the campaign by CFS patient activists to promote M.E. may be like pushing one's boulder upwards but starting from the very bottom of an entirely new hill. Under the modern system of managed care in the States, doctors are less likely to deal with illnesses that they are not already familiar with, be it CFS or M.E. And the disability insurance system will tend to deny any case that is based upon self-reported symptoms that are not backed by an accepted biological marker, regardless of what illness may be listed as a diagnosis.

A side note: some patient activists continue to contend that CFS should be renamed to M.E. However, it ought to be recognized that CFS and M.E. have substantially different definitions despite their many similarities, and equating the two will at the least upset the patient leaders from around the world who are promoting the "real M.E.".

Progress is accelerating, but it's getting fast slowly. And the current level of recognition and research on CFS are not at all what they should be.

A note of thanks: the recent project that I headed to explore the name issue could not have proceeded without the backing of the various national-level organizations that supported the project. Thanks to: the National CFIDS Foundation (USA), Medical PWCs (USA), RESCIND, the MEdium Editorial Board (Netherlands), the Belgium M.E. Assoc., the Norwegian M.E. Assoc., the Denmark M.E. Assoc., the Alison Hunter Memorial Foundation (Australia), and Canada's ME/FM Action Network. Again, the opinions expressed above are solely my own and do not represent the views of any other individual or organization.

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