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These comments are those of Roger Burns alone
and do not represent the views of any group or individual.

CFS and M.E.

My name is Roger Burns, I am the publisher of the CFS-NEWS newsletter and I have been a leader on the CFS name-change issue since 1996.

Although many people consider CFS and M.E. to be the same illness, a significant part of the CFS/M.E. community consider them to be different and they find the current proposal to re-name CFS as "M.E." to be an significant problem. In the view of myself and others, it will be important to promote the M.E. concept itself and to consider other alternatives for replacing the CFS name, before deciding to equate CFS and M.E. and try to give one concept the name of the other.

In the USA, introducing the concept of M.E. to the medical community will be a challenge. It will take many years to successfully promote M.E. Yet there is an opportunity to change the CFS name now. I conclude that it will be important to proceed with changing the CFS without waiting for the M.E. concept to become accepted in the USA.

Who is it that believes that CFS and M.E. are different entities? When chronic fatigue syndrome was first defined and named in 1988, the definition panel that was assembled was comprised of 18 scientists, but two of them refused to sign the final document because the proposed definition (and new name -- CFS) was too different from the M.E. they were familar with. Those two scientists were Alexis Shelokov and Gordon Parish. The current, 1994 definition is considered to be even looser than the 1988 one.

Myalgic encephalomyelitis (now sometimes known more accurately as myalgic encephalopathy) was defined and named in the mid-1950s in Britain. The late Dr. Melvin Ramsay probably worked on M.E. more so than any other researcher. Ramsay's colleagues, and Ramsay's own writings, view the key distinguishing characteistic of M.E. to be that it's definition includes exercise intolerance as a *required* criterion, whereas none of the CFS definitions have that as a requirement. In the view of many of these original M.E. experts, a CFS definition that does not require exercise intolerance is hardly different from generalized chronic fatigue and could well be placed in a psychiatric category.

[A personal note: many who have CFS but who don't meet the M.E. definition are nonetheless seriously ill. Those who have M.E. and who disdain the CFS concept would do well to remember the many years during which they themselves have been unjustifiably dismissed as having a condition that is "all in the mind", and consider that non-M.E. CFS patients may well have a serious illness even if it is not M.E. It would be a pity if M.E. patients quickly jumped to conclusions about others when they themselves have long been the victims of prejudice.]

Although most patients in Britain these days seem to accept the equivalence of CFS and M.E., many patient leaders on the continent of Europe hold to the views of the old-line M.E. experts who view the two as being different, as was evident during testimony on CFS at the Brussels CFS medical conference in 1999. It will surprise many American patients to learn that these M.E. purists in Europe consider the CDC definitions of CFS to be much more similar to the Oxford CFS definition than to any of the M.E. definitions. And so when some Americans propose that CFS take on the name of M.E., these M.E. leaders are concerned that the M.E. concept would thereby be diluted and perhaps evbentually lost by being mixed with the American psychiatric entity of "CFS". In fact, some of these leaders consider the American patients to be as much a part of the problem as are the American scientists who first defined and named CFS, and they are concerned that if left to their own designs the Americans will "[screw] it up again" (a less polite word was actually used in the testimony at Brussels).

There are many countries that are concerned with the CFS name change issue. The CFS concept is used to one degree or another in most countries of Europe and in Canada, Australia, New Zealand, South Africa, and in several countries in Latin America. I have recently found the current American name-change process to be encouraging. As this process develops, I hope that we will in fact be trying to seek the broadest worldwide consensus on the name issue rather than having leaders in one influential country try to make a decision for the rest of the world.

Also, as I publicly recommended at the recent Seattle CFS conference, I hope that whatever the American name-change committee may do, it would be very helpful for them to include in their final report a recommendation that M.E. is an important and worthwhile concept that ought to be recognized by the medical community, regardless of how it may or may not differ from CFS.

Name-change alternatives

I had been asked by Dr. Leonard Jason of the American name-change committee to hold off on discussing certain issues in public until after the committee made its interim report at the Seattle CFS conference, so I am proceeding to post about these now.

    New names

In my previous message I discussed the fact that M.E. leaders in several countries are objecting to a solution to the CFS name problem that requires, if only implicitly, that CFS and M.E. are the same condition.

There are other alternatives to "CFS" that I think are very worth considering but which have not been widely discussed yyet. Specifically:

(1) At the Brussels 1999 conference, European leaders proposed that CFS be given a name such as "M.E.-like disease". This would put the emphasis on the M.E. concept without having to resolve the differences between the M.E. and CFS definitions. This proposal was put forth by Ellen Piro and Anna-Louise Midsem. Ellen Piro is the president of the Norwegian M.E. Association. Although she is often confined to a wheelchair, in 1995 she circulated a worldwide petition to get the CFS name changed and she personally brought it to the Dublin CFS conference to urge the scientists to make a change. Few leaders have contributed as much as Ellen has to the name change issue. Anna-Louise Midsem is the vice-president of the European M.E. Association Alliance.

(2) A wholly new scientific name that emphasizes the biological aspects of the disease. I recently consulted with many international leaders about the proposed new name "Neuroendocrine Immune Disorder". While few leaders were enthused with that particular name, all of the leaders I spoke with were very impressed with the idea that a scientific review of the evidence about CFS, made by scientists who are serving on the American name-change committee, had spawned a new alternative name for the illness that could be argued well before other scientists, and which might even gain support from additional scientists. In my own discussions with the name-change committee's members, I found them very amenable to considering alterations to the specific name that might be generated from a scientific review.

    Support from the medical community

Another point to consider is that any replacement name for CFS will be greatly helped by being supported by doctors and scientists. Such support actually seems possible now even though it wasn't as recently as a year or two ago. A poll by Dr. Nancy Klimas at this past January's AACFS conference shows that most doctors who responded felt that the time for a name change has arrived, whereas a majority had opposed it a mere two years ago. There is also some indication that a prominent scientist may be considering backing a name change now.

Gaining the support of scientists on a name change is not a trivial prize. In years past, no doctor or scientist would publicly oppose the CDC in its consistent opposition to a name change. In addition, previous attempts to legitimize the illness were strongly undermined by statements from scientists who ae perceived by the media as being esperts on CFS. Those who wish to change the name "CFS" and use that change to help legitimize the illness will pretty much have one shot at doing so. If we don't have support from scientists whose stature can match that prominent opponents of our effort, then our one effort at this could well be blown away by the opposition. Claims that the support of scientists "doesn't matter" are not considering this practical reality. It matters. And their support may be available.

It may be difficult for some CFS leaders to accept or seek out help from scientists who might assist us now, since there will be a strong temptation to feel like saying "why didn't you help us ten years ago". Regardless, their help must be sought out now if they indeed will help us. The welfare of millions of patients will be greatly improved if this campaign for legitimization is successful and is made as strong as it can be.

    Syndromes -- plural?

Several CFS/M.E. leaders have recommended that the new name for CFS be in the form of a plural, such as "chronic fatigue syndromes" or "myalgic encephalopathies", in order to encourage research to focus on separating out subgroups which improve the science about the illness. While it will indeed be important for science to identify subgroups, please remember that a main purpose of changing the name is to get the disease more widely accepted for diagnosis. If CFS is given *any* plural name, then a patient seeking a diagnosis could be told that "you match the general criteria for the syndromes, but we don't know which one specifically that you have, so we can't give you a formal diagnosis."

It may be wise to avoid having the new name be in the form of a plural.

    Recognize M.E. and support a CFS name change

It would be well for M.E. to be widely accepted as a research entity, and for diagnosis and treatments. (And here I mean M.E itself, not merely its name.) If the widespread recognition of M.E. can be brought about in the USA, it will take many years. We must begin by to getting doctors and scientists to accept and use M.E.

But the CFS name ought to be changed *now*. Doctors are ready to consider a name-change. Getting the disease and its new name accepted will require the help of doctors, if only because there *will* be opposition to this effort. And doctors will be more likely to help IF they have a large say in choosing the new name -- which is alright AS LONG as the patient community retains a veto on any new name (which we can effect through the current U.S. government name-change committee). And that veto power by the patient community is necessary, after all, the since the medical community did indeed screw it up when they chose a name by themselves the first time around.

A year ago I thought the name-change was dead. Now, given the interest of the American government committee and of doctors and some scientists, it is a real possibility. The change won't be handed to us. It will be an uphill struggle. And we'll have to make compromises with those with whom we disagree, else we'll undercut the overall effort. Are we up to that task?

As long as a new name doesn't denigrate the patients and does the most to legitimize the illness, it will be important to support it. And after a broad name-choosing process we'll need support from as many patients, doctors, scientists and government officials as possible to promote the new name, and its tandem educational campaign about the illness -- which in the end is the whole purpose of changing the name.

This text has been posted to many Internet groups. I'm going to follow the discussions that follow, and incorporate some of the discussions in a revised version of these postings in an upcoming edition of the CFS-NEWS newsletter. If you wish to be certain that I see your replies, you may wish to copy me directly at my private email address at cfs-news@cais.com.

For further information about M.E., see http://www.cfs-news.org/me.htm .

For further information about the CFS name-change issue, see http://www.cfs-news.org/name.htm .

-- Roger Burns
Publisher, CFS-NEWS

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