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Many thanks re the billboards, but something was overlooked

by

Judith Fleet Wisdom, M.A.

September 19, 1999

To: Tony Hale TonyH@cpalace.com.au

From: Judith Wisdom

Subject: Many thanks re the billboards, but something was overlooked

Dear Mr. Hale:

I want to thank you very much for your having responded with such promptness to my email, which had objected very strongly to those billboards that used, however innocently, the name of the very serious disease "Chronic Fatigue Syndrome" (CFS) in a way that made a mockery out of this often dreadful illness, currently incurable and which has virtually undone my life and that of so many others. I want to thank you also for having written to us to let us know the action you were taking, and for apologizing. I very much respected you for that.

I'm sure you can imagine that the name -"CFS" that was chosen for this illness (a long story) has not helped us. For, it makes it rather easy for people to take it lightly and even mock it. There are other serious consequences that occur as a result of the name as well: clinicians and researchers who so desperately seek grants to study the complex ins and outs of this disease, with the ultimate purpose of both alleviating its several most disabling and severe symptoms (epic fatigue being only one, however important a one), and ultimately curing it, have a harder time getting the money, though, happily, increasingly these researchers are now having a less difficult time. This, because CFS is increasingly (though still not sufficiently) getting the serious recognition it requires if we're not to remain incurable invalids all our lives-the "we" being those of us who have it, many of whom, myself included, were perfectly healthy, vigorous, productive people. This increasing respect is occurring both in medical and scientific circles as well as among the public. But it still has a very long way to go.

The name "Chronic Fatigue Syndrome" also often places terrible burdens on patients afflicted with it: sometimes with members of the health care system, from some doctors, nurses, technicians, and secretaries, all of whom affect the care and atmosphere of care. For, some of these people are still are ignorant of the disease. And the name, if someone doesn't know someone who has the illness or doesn't know about it, makes us the target, as with your billboards, of dismissal and mockery. So on top of the physical suffering (over years and often increasingly worse), the often loss of careers, financial solvency, and ability to have a decent social, physical activity (the latter of which brings on other health problems), and the all-important cultural or leisure part of our lives, we have to suffer mockery when it is basic help and care we need and are after. For, when the attitude of mockery, disbelief, and dismissal occurs in those working in health and welfare bureaucracies, it makes trying to get by while you're trying to get better (or not worse) very stressful-to-impossible. I could tell you so many stories about that. . . .

All of which is, of course, at the root of why we were so very concerned with that billboard's message, which so blatantly mocked the disease. With CFS as the name, it is SO easy for someone to say something like "What are you making an illness out of it for, I'm chronically fatigued myself, given my job, my family responsibilities, etc.?"

But, as patients clinically recorded experience and as increasingly solid research into the illness have demonstrated over and over again--however bad awful fatigue is when you are well (I suffered it myself many times in the many, many years I was perfectly healthy, like on moving day or when there is a death in the family) it is simply very different from the fatigue of this illness, alas. Or a good rest or vacation would indeed fix it. And, as alluded to earlier, fatigue isn't the only severely disabling symptom that comes along with the illness.

HOWEVER, in my original email to you I brought up something that you DIDN'T address in your answer to me or to others: that something really should be done to UNDO the harm ALREADY done by those billboards that were in place for however long they were, thereby sending such an UNDERMINING message about this disease to (1) the folks who put them up; (2) the advertising firm that probably devised them, with great delight over their cleverness (I worked in advertising for a while before I finished my doctoral work in the sociology of medicine, and I know what makes ad people proud); (3) the people in the cars who drove by and saw the billboards; and (4) also the people who all the former groups of people spoke to about those billboards, maybe with a good laugh, possibly commenting how bogus CFS is and how clever it was of your resort(s) to take such advantage of this fact and put it to your good use.

All of that, of course, has, as I said above, ALREADY given support and credence to those who take the position that Chronic Fatigue Syndrome is much ado about nothing, or a sign of laziness, or self-indulgence, or a psychiatric disorder (all of which, in the history of medicine, even when the disease names sound very medico-scientific, occur when the medical community cannot either see something clearcut under a microscope in the way of an organism or pathology visible with current techniques of visualizing. A recent example, even where there was admitted physical pathology, is with stomach ulcers. For years they were treated as evidence of not handling stress well. But thanks to a researcher, whose name currently eludes me, they've discovered that a very specific bacterium, H. pylori, is at the root of that painful and sometimes life-threatening disease.

There are countless other examples, as I suspect you might know.

Given the harm ALREADY AND IRREVERSABLY done to us by those very explicit billboards, however unintended I trust that it was, what you've already done as remedy (e.g., taken them down and apologizing to us) doesn't undo that all. Billboards come down all the time with no meaning assigned to them unless they are taken down as a result of public clamor, and ours was private, and online. And your letters to us weren't public letters.

But there are things that can be done which would go a long way to help and which I believe would ALSO help the image of your company(is), i.e., would RAISE YOUR CORPORATE IMAGE by causing people to view the owners and staff of your resort(s) as exceptionally caring, extraordinarily moral, and decent individuals: that Campaign Palace and Hamilton Island (I'm not sure how they differ, though I've assumed that the former is the resort and the latter the geographical place or a related resort) is/are peopled by a staff that would go out of their way to treat their guests with sensitive and very caring service. And people, whether they are purchasing an item in a shop, buying a computer, or selecting a vacation resort, pay A GREAT DEAL OF ATTENTION to that aspect of whom they chose to patronize

Kindness and decency actually draws business. It does mine, and does most people. IT SELLS.

MY REQUEST IS THIS:

That you, in concert with your advertising firm, with the help of some well-respected and dedicated medical people, ones who are well-steeped in clinical and research familiarity with this disease, but who can talk to regular folks, not just medical people (I'd be glad to lend some help in pointing the way to such people, both in the U.S. and Australia. And I know some patients in Australia, via the Internet, who have shown themselves to be so intelligent, reasonable, reliable, and knowledgeable, and I would think they should and would help as well.

This sort of medical consultation/advice, along with that of a few patients who have been dedicated and fair-minded, would be to help you help you and your advertising firm, take the sort of counter action necessary to undo the harm those billboards have done.

Your advertising people might very well know best. But I was thinking of something either like another billboard, or mass mailing, or, BETTER YET, a short radio and/or television piece that would (a) apologize for how casual you were about so serious a medical illness; (b) that you hadn't known that Chronic Fatigue Syndrome was a serious and currently incurable condition or would never have taken any steps to heap upon those already suffering ridicule, or demean them and their illness, as those billboards very much did; and (c) take this opportunity to put out some very basic information (factoids, nothing elaborate) that would help educate people about CFS.

The sort of factoids that I can think of right now might be of the following sort: (a) its Australian and worldwide prevalence; (b) some of its main and most disabling symptoms; (c) who to call locally for more information; and (d) where contributions for further research can be made.

The choice of these would be up to the form your piece would take.

I am also sending this email to Barry Atkins, who I also believe was involved with the billboard, though I didn't, I think, originally write him too. I know I didn't hear back from him, as I did you.

I very much look forward to your reply. And do hope you realize that although in taking the billboards down you addressed the future, avoiding creating further harm, which was good and very appreciated, that didn't do anything to address the harm already done or compensate those you harmed already, despite your very likely doing it quite innocently, which I do believe and prefer to, and which isn't really important to me.

Sincerely,

Judith Fleet Wisdom

Cc: Barry Atkins batkins@hamiltonisland.com.au

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