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IS CHANGING THE NAME THE BEST WAY TO END THE STIGMA? Rethinking our Strategy by Judith Fleet Wisdom, M.A.

It is not easy for me to tackle this subject. But I do so for two reasons: (a) to connect the issue of our concern over changing the name to the issue of CFS doctors' role in helping end the stigma, which was the main point of my very last CO-CURE article, called, " Cytokines, Flu, Neuropathic Pain, CFS/ME, And, Dr. Steven Straus: Will The Important Connection Be Made For Us?" (for its website, see Note 1 below); and (b) to pull together the ideas I now feel about the name issue, some of which others have expressed in posts I've read; but, for the most part, those ideas have tended to lead to rather different conclusions than those I'll put forward here. (If I missed any sentiments written by others on this, it is not for reasons of purposeful overlooking, but lack of energy and health. And I apologize.)

My main concern in writing this article is that the conclusions a number of different voices, some that have considerable advocacy movement clout and some who are PWCs just like me, though these conclusions are based on a premise that correctly acknowledges a central truth (the reluctance of our physicians to support a change to a scientific name), the conclusion itself is terribly conservative and bows to extant beliefs held by our docs rather than making rational and well grounded efforts to move them closer to where we need them to be.

And isn't that our duty--to move the folks who can help us and who have, for different reasons, remained too conservative for our good, and for far too long?! Let me explain my thinking on this.

(I don't think it probably needs to be mentioned, but I'll say it anyway: we've stood still far too long. Lives have been lost, careers and spirits eviscerated, and many of our people have a very grim future with respect to fulfillment, health, and financial security. I do not argue for change or movement just because I want it, though that is perfectly rational motive; I argue for it because I believe the reasons given for there not being enough to support moving no longer stand up. They used to, but things have changed. Very much.

To continue.

In changing the name, our purpose is not trivial: the reason that underlies it is that we want to decrease and try to move to end the stigma, since it hurts us in SO many ways (and hurts our physicians, as well, and that too hurts us!).

The first conservative and accepting-the-status-quo response is that of two powerful advocacy loci, Roger Burns and the CFIDS Association of America (CAA), who feel that a change to an eponym has a chance AND will accomplish a diminution of the stigma we so hate, has also the virtue that it won't challenge the physicians' objections. They very well may be right that it won't upset our docs. But the undermpinnings our docs are using to avoid changing the name (a position, by the way, I'm not arguing for) is no longer valid.

More on that in a little bit.

I first want to state, and will explain the reasons for my position a bit later, that changing to an eponym, in terms of ending the stigma is a useless tactic: for an eponym will do us no good and might do us some harm.

The second conservative and accepting-the-status-quo response is the argument that we can't because there is no diagnostic marker. That with no marker, the docs are right--there isn't enough science. Those are NOT equatable. For, in the last year or more there has been a tremendous growth of peer-reviewed articles on our illness, AND there has been some exciting and thus "inter- hypothesis" overlap among some of these studies. This is a VERY important development--for it means that researchers, coming to understand this illness from different points of view, are seeing some of the same things. And when this happens in science it strongly suggests that there is a honing in on some central truths--some agreements over the mechanisms of the illness (or whatever the science is looking at) from disparate quarters. Though I am weak now on the history of science, for, having had the illness has interrupted my reading on this area of thought, but I know that even from the point of view of good common sense, this overlapping phenomenon suggests a new and higher level: scientists are validating the work of other scientists WITHOUT starting out to.

This means that, unlike in the past efforts to change the name, we DO have some very respectable science, and that science could be used to help substantially reduce the stigma and put us on the map (name change or no). But, the fact that our M.D.s and Ph.D.s are letting it (the science) remain hidden within the halls of medical academe means it is doing the stigma problem very little good--which was really the main thesis of my Straus/Cytokines article, referred to above. It was about how our docs are not doing part of their job for us and our illness: using their statused positions to get the word out about this science.

For it is they and not us who can most effectively do this with their medical colleagues, the press, the public, and governmental bodies.

And physicians in virtually every field of medicine and those attached to virtually every illness do this sort of public education/political rallying work: for they know they are the only folks who really can, and they know it is a must in order to attract respect and research money for the illness in question.

Our docs, I will charge, have lagged on this, hiding, with us letting them do so, behind the "not enough science" argument. But that is an old truth. So we now have to job them and not let them hide behind it now. Which is what we are doing by acceding to an eponym and/or saying that with no diagnostic marker there is not enough science. We are allowing them to remain silent, as if what has in fact happened in the science of CFS hasn't happened when IT HAS.

I have seen, especially since the September l8 conference, which was to have educated the rest of the medical community about CFS, that they speak out of both sides of their mouths: they are supportive of the non-IAIYH position when with us or their CFS colleagues, but they are either silent or waffle like mad when they are not preaching to the choir.

I cannot get into their individual heads, but sociologically speaking, this is not an unfamiliar phenomenon. Every group of people in society wears different hats. These docs can be good to us, but they also have careers to protect, good cars to buy, good schools to send their children to, nice clothes to buy for their family, lovely houses, etc. So when they are not protected by a friendly and supportive audience they take a very career protecting stance. The name for this is "opportunism." And, now, when to finally speak out isn't anywhere near as risky as it used to be they are playing it safe.

If I had the time, and others have done this some, I believe, the bibliography of scientific articles on CFS in peer-reviewed journals, plus abstracts of conference reports on ongoing research, is VERY hefty. Not just in length. But in quality. Just the names of the journals these articles are published in lends prestige to their talking out about our disease.

So, the arguments made by Roger Burns, the CAA, and many PWCs, that there isn't enough science to allow our docs to support a name change to a scientific name, reflects a sad tendency started and maintained by our leading advocacy voices and then, as will happen, bought into by many PWCs, that the docs are right in what we believe will be their contention, that there isn't enough science.

There is, and it must be used to end the stigma, name change or no.

As I've said, this article is not a reflection of a strong conviction that the name must be changed, though I don't oppose it unless it is an eponym (reasons still to come!). I am not going to take a position on that for this reason: though I used to be very pro-change the name and worked hard for it, my position has changed now, with a change in circumstances.

I believe the stigma must be ended. And the FIRST thing that must happen is that we must push our docs to speak out about the fascinating and considerable and respectable nature of the science beyond this disease.

That is a HUGE job: getting them to see this, reminding them that docs have done this and are doing this in other fields and with other illnesses and we need them to do it for us, and, maybe, presenting them with the evidence--bibliographies of citations and abstracts.

I could even see "actions" of folks stuffing their fax machines and email addresses with this material. Or sending it snailmail.

But this isn't about logistics. It really is to say that the name change movements is dripping with solicitousness to our doctors rather than rightfully knowing where they are and seeing how that position can and must be changed AND NOT ACCEPTED.

First let's make efforts to end the stigma by getting them to get the science out and make an argument for the legitimacy of our illness to the various groups I mentioned above (their colleagues, the government, the press, the public). Then, if a name change is something we want, we will have them without the objection we've seen them offer.

By the way, as to my objection to an eponym in OUR case: The reason why an eponym will do us little good over "chronic fatigue syndrome" can be summed up this way: there is a HUGE likelihood, when giving an eponym to a disease whose status is quite low, even laughed at, that people, professionals, government officials, and the general public, will soon realize that this is another name for chronic fatigue syndrome; and in the back of their mind they will say something like, "if it quacks like a chronic fatigue syndrome, and if it walks like a . ..it is CHRONIC FATIGUE SYNDROME.

I must be honest that I haven't the time or ability to do the kind of social cultural historical research of eponyms for illnesses in the history of medicine; but just from my feel for the enormous tendency for why our medical and public worlds tend to stigmatize diseases and do the IAIYH number on them, I would strongly argue that a disease not newly named with an eponym but CHANGED to an eponym will gain little and maybe even lose. For it could be seen as a sad and desperate effort to de-stigmatize motivated by Elaine Showalter's hysterics or by PWCs trying to make themselves look legitimate.

In sum, we must not settle for an eponym, we must require of our doctors that they not let the science linger in the medical libraries: they must bring it out to the light of day, translate it, make it understandable to the nonscientific populace, use it as it is with their non-CFS colleagues, and put us on the map.

We can discuss whether this effort should be done along with a name change or prior to it. I would argue for the latter but I have no hugely strong feelings about it. I just want very much to end the wrong-headed notion that there isn't enough science. There is. It is exciting. It behooves the government to set up an office to catalogue it, report it out regularly in a monthly or quarterly publication, get scientists to work at synthesizing it and including such commentary in such a publication.

And this is what our doctors should be doing also. Physicians are among the highest statused career positions in our society. And while they haven't always used their status well, it is still there, despite the growing power of HMOs and businessmen. The physicians haven't always been real creative about using their status because of fear of losing it. They won't. People in the business of life and death have a lot of power. If the insurance companies try to undermine some of it some organizing of their power might have to be done. It is happening but doctors don't like to change their social function, so they are letting their power erode some.

But they still have so much.

And we have to remember, as I mentioned in my prior article, Larry Kramer vis a vis Anthony Fauci. No, Kim Kenney needn't dress up in overalls. But she and the CAA and Roger and the rest of us need to not take on the conservative stance of protecting folks who are not doing the most for us. We have to provide a countervailing force and make it difficult for them to continue in that conservative position. Kramer and Company did that with respect to the Faucis of the world. And Fauci now respects Kramer. Overalls and all.

Notes:

1. This article can be found at http://www.best.com/~cfids/wisdom/cytokines.html.

2. In the recent issue of The National CFIDS Association FORUM, Jay Goldstein, M.D., spoke of how he has been treated rather badly within the CFS medical community and his academic setting. I don't know all the facts but his experience is not a counter-example for my argument. If in fact what he says is true, and I am not here in any way suggesting I don't believe him, I'm just saying this to be responsible intellectually, since I haven't independently researched this, it is an example of a physician working alone to speak out. They have to act in concert unless they are very well placed, maybe like being on the faculty at Harvard. This is an obvious fact of working at the frontier in any field. Of being a maverick. So don't take Goldstein's report of paying heavily as reason to allow the docs to stay silent. But remember, docs are often a quite conservative group and they also don't like to organize together, but rather work and speak out as individuals. Well, folks, we have to make them realize that we need their help too much to let them function with such comfort. I am, as you are, VERY uncomfortable. I had to sell my old car because I could no longer pay the insurance even though I was finishing my dissertation and had an excellent job teaching behavioral medicine in a family practice residency program. My future is grim. With my now broken foot, which can't take weight and requires crutches, but I can't use crutches because of the fibromyalgia and deconditioning I can't exactly support their being comfortable. Nor can you.

(Unfortunately when finishing this article I fell and broke a bone in my ankle. The situation I'm in is pretty horrendous, re care. I'm saying this in case there are certain typos and carelessness, as I am very distracted and a bit frightened. But I wanted to get this out. I am not saying this to ask for any slack cut me for the argument presented. As I believed it before I fell!)

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