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P.S. TO THOUGHTS ABOUT ENDING THE STIGMA: The Role of the Name Change by Judith Fleet Wisdom, M.A.

Almost not a day goes by when I don't think about the issue of how to end the social stigma so associated with this disease, chronic fatigue syndrome (CFS).

The subject either passes through my mind because I've written about it, or because I read the posts of people who have this illness (PWCs) on the Internet CFS groups, or someone asks me what I "have" and I say, with an internal (I hope internal) cringe, "chronic fatigue syndrome."

Though, interestingly, instead of "what's that?" followed, in time, after I describe it, with some comment about whether it might not be psychological or from stress (I try to keep my dukes to my side and so far have succeeded!), I now more often get, "oh, I've been recently reading about that illness," and they go on to say what they know. But I phase out. As if I don't want to hear and don't want to correct them. But I do discern that they have learned it is "real."

But the problems of years of dismissal of our illness by the government and the press, and the consequent and related lack of knowledge about it, lack of trained physicians to treat us, lack of research monies, and lack of respect still has ENORMOUS impact. There is so much catching up to do to get to where we should have been long ago, had there been proper concern.

At the moment, out of our worry about all this, there is a resurgence among PWC advocates and many PWCs about changing the name in order to end the stigma.

To my surprise, in reply to a post on a CFS Internet list, which was a reply to an old post of mine on that same list, in very good faith the poster made a suggestion for a name that would possibly work. It was in response to some of my concerns about the name change. That was back when I was more into coming up with name suggestions.

But what I said now, in reply, almost something that burst out of me, was that I wouldn't come up with one more name. I just wouldn't. I and others have spewed out names until we are blue in the face. I feel the fool for doing so any further. And, right or wrong I even feel the fool for voting on a name. For, the hard and cold fact is that while our big name doctors feel our present name is unfortunate they will not participate in changing the name to a scientific one until there is a definitive diagnostic marker. And without them we are sunk.

I will give you all my wealth if there will be one definitive diagnostic marker.

Those same doctors often, themselves, say that CFS is probably a cluster of related diseases, which means that what will probably happen is that there will be several diagnostic markers.

In fact the literature is beginning to reveal that . While many of the different pathologies felt to be central to CFS, when tested for, do differentiate patients diagnosed with CFS from healthy normal folks or those with other chronic diseases or our old friend, depression, none of these tests find that l00% of PWCs are found positive.

That is highly suggestive of subgroups.

And the literature is exciting. It is getting published in respectable medical journals.

So far, none of it has challenged that CFS isn't a kind of umbrella illness. For, they use patients diagnosed with CFS.

So I suggest that it is from this literature and from the rather vast clinical experience with this disease, the enormous clinical base of knowledge, that the stigma can end.

But only if the physicians and Ph.D.s, the clinicians and researchers, make all this known to their colleagues who are NOT CFS sophisticated or even inclined to consider CFS seriously; and to the public and government, using media resources very wisely.

If they are waiting for A (as in "one") diagnostic marker to change the name , I am here saying they are also waiting for that diagnostic marker to speak out about the clinical and research advances in knowledge. And that is bad news.

Until they speak out they will not co-operate with us in our desire (and even theirs) to change the name. They will not. They even say so. And by "they" don't think I have gone out and researched all CFS doctors. I am too ill to. There are some exceptions I am sure. But too few. And because of that they (the exceptions) risk being ridiculed.

It has to be an organized effort. It has to be joined or led by the doctors with the most status, cushioned by good academic institutions, then allied with by non-affiliated doctors, taken into the bosom of the affiliated docs. Marginal into those well within the margin.

Then and only then will the science get out. Will the stigma begin to end. Will they (M.D.s and Ph.D.s) work with us to change the name.

How we are going to prod them to do this, I am not sure. I know that all evidence points to the fact that the CAA and other major and long established advocacy voices haven't challenged them. And that is wrong. I've said this before. Our advocacy leaders, whoever they are, must make it difficult for the docs to remain in the closet. To the press, to their broader medical colleagues, and the governments of our many countries. They must "come out," notjust to us and their CFS medical colleagues. The full analogy is this: if you are gay it is easier to tell gay friends; the challenge is telling your parents and bosses and heterosexual friends.

To only speak positively about CFS to us and not to outsiders to CFS is speaking out of both sides of one's mouth. It is playing it very, very safe. While we get sicker, many of us. I hate to say this, but you don't have to be a rocket scientist to know that with each year we get older. And age and lack of activity and pathological processes in the body all conspire to undermine your health and life expectancy. That isn't fun to say or think about. We don't say it much. I am saying it here because it is the price we pay for letting them stay in the closet.

For letting our advocacy leaders settle for eponyms. (1) For often playing footsy with the big names rather than challenging them.

Larry Kramer, of AIDs activist fame, is someone I always invoke at this juncture in my argument. I'm not on his payroll. I don't know his publicist. I don't have his e-mail address or know if he has one! I wish I did. I don't even wear overalls.

But we must be more trenchant vis a vis our doctors like Larry is. With our big name doctors especially. And we have to get them into the public arena.

I hate overalls. I don't have to wear them to be trenchant and challenging. Get some of us on a panel on the Charlie Rose show. I actually wrote Charlie Rose a long letter about this, but have heard nothing. He went to the same school I did--the University of North Carolina. He was born in that state and loves it. My heart and soul are North Carolina. In my will I have it that my ashes must be spread on the campus there. If I could recover enough health I would move back. I spoke to him of that too, hoping that would get to him. I know someone he knows.

Larry Kramer and Anthony Fauci were on his show numerous times. Why not us and a few of our doctors and even Fauci? Isn't CFS within the NIAID (National Institutes of Allergy and Infectious Diseases) pantheon? Maybe not. But we can find plenty of people to represent the medical establishment involved with CFS. This is the sort of thing we need.

I don't oppose a name change. But though one should never predict, I doubt it will happen anytime soon; or, if it does, I doubt it will have great impact unless our doctors, en masse, not a few here and a few there, come out of the closet.

It probably won't be as traumatic as coming out if you are gay and have never told anyone. All they have to say is that CFS is a rotten disease, that the research shows X, Y, and Z, that the clinical experience is A, B, C, D, and E, that PWCs are suffering badly, that we can't live on SSDI if we don't have family wealth or a second household income, and so single household income families or those that need two incomes and only have one are under great stress. And stress is bad for you when you are ill. Even when you have a cold, diabetes, or cancer. Real diseases like that. Real diseases like chronic fatigue syndrome.

Notes:

1. The article in which I discuss the problem with the eponym, a precursor to this article, called "IS CHANGING THE NAME THE BEST WAY TO END THE STIGMA? Rethinking our Strategy," which was originally published on CO-CURE is now available at http://www.best.com/~cfids/wisdom/stigma.htm

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