March 23, 2000

Donna Dean, Ph.D.
Senior Advisor to the Acting Director, NIH
One Center Drive, MSC 0170
Shannon Building, Room 257
Bethesda, MD 20892-0170

VIA FACSIMILE

Dear Dr. Dean:

This letter concerns two issues having to do with the research, clinical education, patient care, and patient advocacy with respect to chronic fatigue syndrome (CFS), which is one of the health matters that falls within your area of authority at the Department of Health and Human Services.

As some background, I'm attaching two pieces of previous correspondence so that you'll have them at your fingertips in case they're not easily available. They are: (a) a letter to David Morens, M.D., dated February 1, 2000; and (b) an email to you, dated February 29, 2000, which was written in response to your request for nominations to various ad hoc and standing committees that come under your aegis, committees having to do, again, with chronic fatigue syndrome.

I'm also enclosing my curriculum vitae. My reason for doing so is because I felt it might be of some help to you in placing what I'm about to say within the context not only of my powerfully intense albeit much-too-long education as a patient with the diagnosis of chronic fatigue syndrome, but also in terms of my graduate education and subsequent career.

Since my CV goes into some detail, I'll just say here that my graduate academic training was in the sociology of medicine and my career involved a very intense experience working in a university hospital general medical residency program, working directly with patients and physicians while they diagnosed and treated patients. This experience had me constantly involved in dealing with tough problems involving both medical work and health care politics, which more often than is recognized intersect.

All three-my patienthood, my formal academic education, and my teaching career in the heart of health care delivery-all have contributed to my general education, a mighty education, from different perspectives often but "feedbacking" on each other, and layering, which has given my knowledge of these issues considerable variousness and heft in ways that pure academics simply can't do.

And its this background, still developing, that I can't help but bring to my understanding of the social and political forces that drive (a) professional and governmental health and welfare institutions, policy, and agencies, and the thinking and attitudes of the people who inhabit these; (b) the attitudes underlying health planning for clinical care and for research; and (c) the condition of being a patient with a unsolved and often terribly disabling illness, with its often inevitable, ultimate serious other health, social, and financial sequelae. I studied this material and saw it in action but it was only when I became subjected to it as a patient did my knowledge really solidify in a way I could never have expected. Like being an anthropologist, with myself being the anthropologist as well as the informant in the exotic culture that is our health care system, where the "natives" are all its inhabitants: patients, physicians, other clinicians, health planners, etc.

End of explanation of perspective and on to my reason for Writing to you. What initially prompted me to write you is that, frankly, I'm completely confused and concerned about the nominations you asked us to get to you-nominations for a variety of ad hoc and standing committees.(1)

Having responded to your request to be emailed with names of people I wished to nominate, I quite naturally have tried to find out what has happened to these nominations. But I've had no luck. Making me worried, because of the past.

I quite naturally assumed, because it's embedded into the very meaning of the word "nomination" that the nomination process was a prelude to an announced process by which these nominees would move from being a pool of nominees to becoming the pool of people who would occupy the positions for which those nominations were sought and submitted. And, that of course, we'd be told about that process, our role in it, assuming we were to have a role, and the whens and wheres of it, role or no. Because a few days ago, in the midst of thinking about other things, it struck me that I'd heard nothing. I feared I'd missed an announcement of how and when the selection would or probably already did take place.

But in my attempt to find out, I've been told, and told by people I respect, reliable people, who, before I took any initiative on this, themselves had contacted your office, but that, to a person, they've received no response!

Thus, though many of us worked fast and thoughtfully to comply with what we felt represented progress on the part of the government in caring about the quality of attention given chronic fatigue syndrome, we seem to be left in an all too familiar position again-hanging in mid-air, excluded, and thus left with the justified fear that things are being delayed or forgotten. That old familiar "déjà vu all over again" syndrome.

We've not been informed, either independently with no prompting from us OR in response to our inquiries. That is not very reassuring. How could it be? It's doubly distressing-ignored and then disregarded! (There's a well-regarded book by Elizabeth Hardwick of THE NEW YORK REVIEW OF BOOKS, called "Seduced and Abandoned." Somehow, that title came to mind!

Dr. Dean, I just didn't think would happen on your watch. Here we are, sick people, trying to help you in your effort to help us and help prevent others from falling prey to this illness, thereby, I'm sure you're very aware, help the government from having to face yet more losses of productive workers and workers-in-training (students), good consumers, and taxpayers, and, as well to prevent continued and increase drain on the various welfare and disability programs that people with long and seriously disabling illnesses such as this one all too frequently are forced to utilize. I am, a former faculty member at a large medical teaching institution, who climbed sometimes sixteen flights of stairs a day, on my feet constantly, meetings, patients so sick you yourself sometimes reeled, exciting work, terrific pay, and now on two forms of welfare and in debt. And terribly on-the-verge of losing my capacity to live independently sick!!!! And not invalided psychologically for some perverse and obscure reason!!!!

During the past history of the government ignoring misunderstanding, dragging its feet, and/or misrepresenting our illness, not doing serious and very basic (which I'll speak to below-important yet not fancy or even sophisticated) work on CFS, during which time, it should of course be remembered, that many of us have deteriorated intolerably, in our illness and in our overall health in general. (For, given your profession, I'm sure you well know that a long-term disabling illness is almost a guarantor of increased morbidity over the general population, from problems beyond the illness itself. Because, in order to maintain good health people must take care to do things our illness prohibits or inhibits our doing. Hence, for example, women and even men with this illness are beginning to show up with increased levels of osteoporosis, something that at the moment, given the available drugs that are well-tolerated, remains a very serious and costly health problem, sometimes fatal, resulting in much decreased quality of life, etc., etc.

In addition to the above worries is the impact on us of what's hovering with regard to what's been uncovered re the CDC's "diverting" monies appropriated for research for chronic fatigue syndrome, which, Dr. Dean, might just be the tip of the disregard iceberg I just mentioned. In fact, there's already some emerging, credible evidence that the CDC isn't alone in this, and that some quarters within the NIH itself may be involved. And, after Dr. Koplan was called before congress and said that they would have been informed of the diversion had he known, congress seemed to treat that as fine; i.e., as long as the scientists determined that a diversion to other research was scientifically justifiable as long as they (Congress) were told, the diversion would very likely get the okay.

That contains two BIG problems. One, that Congress rolls over like a puppy if told by SCIENTISTS that they have got to spend money allocated by OUR, the people's, representatives for research on CFS (or hantavirus, or whatever), leaving the "divertees" up a creek with regard to having any progress made with respect to an illness that's ruining them. I don't think that's good policy!!! I just do not. Further, I'm afraid I have a hard time believing fully that Congress would have been told if Koplan or Mahy or John Doe knew, and that Price Waterhouse may be excellent auditors but I'm not sure they can overcome arrogance justified by being scientists. And that is something that someone has to care about at the DHHS. Those hearings seemed like theater to me. And I have a good sense of what's reality, believe me. Too good.

We just simply must not be subjected to more delay. In fact, on the contrary, things should be speeded up and bucked up considerably. The CDC says the funds have been restored. I think the funds PLUS should be restored, to compensate for the years when they weren't used for the purpose for which they were allocated, and no one knew!!! Outside of the CDC! And who is overseeing what they do with the re-allocated monies? Anyone(s) credible? Independent of the CDC? Who can be trusted to oversee what was previously done in a way as to undermine all trust? Isn't this within your purview of authority? And aren't we people who need to be in on this? I want answers. These are not trivial questions.

In sum, I'd like to know specifically what has happened (a) to the nominations; and (b) whether you're aware that the representatives of chronic fatigue patienthood that the government has assumed in the past and through till very recently if not the present have not, for the most part or at all well-represented the "man, woman, or child in the street" (actually "bed" more often) with chronic fatigue syndrome. Instead, most have tended to be people, whose intentions I don't question, from organizations that made a serious mistake in setting themselves up with no constituency process (they may have mailing lists-but that's quite a different matter: a mailing list is not a form by which a constituency can be said to exist, ipso facto, without concerted efforts to get their binding input). And the whole CDC business discussed above, including the absolutely necessary (see my letter to Dr. Morens, attached) investigation of what can't be called anything but incredible bias in research at the NIH, a place we depend on for our health. The AIDS activists had to hound NIH before it got going but since that disease, in the U.S., hit a group of people, primarily male homosexuals, they had a healthy cohort to agitate for those who were sick as hell. We don't. We are a cohort only by virtue of being sick. Though as you are aware we are doing more and more, and we'll do more, but do know that everything we do, including writing this letter, drains our health and we shouldn't have to do this to get things on track.

One problem is a hole the government dug for itself, in selecting one group as representative of the cause. Specifically, I refer to the CFIDS Association of America (CAA), whose existence was at first very thrilling and vital to me: finding them meant I was no longer alone, after years, with then no Internet, no longer the only person I knew with this disease, although, I do now remember finding the British myalgic Encephalomyelitis people, who kindly sent me their magazine, which put me in touch with some physicians and their clinical understanding and some research. But with time it's become apparent to me, and to others, that the CAA has shown little understanding of certain vital issues, has shown no interest in learning of, or representing, our wishes; yet the government has routinely treated them as the representative of our needs and our wants.

Why? This has been very destructive and distressful, and must not be treated as evidence of foolish internal differences or squabbling but descriptive of the difference between what's representative and what's not. By treating the CAA as representative of people with our illness the government has fed into its own mishandling of chronic fatigue syndrome-you've simply received some very bad or seriously incomplete information! And you have taken no steps to prevent that.

The government can't assume that an organization is representative without finding that out independently. Because you have to get information about actual reality in order to develop wise and credible policy. And there are very easy ways to determine that that I'm sure you're aware of-simple "field research" to find us. We are out here and very "interviewable." As well as here to be informed of activities that can and should and do affect our very existence. No small matter. Please remember, again, that mailing lists do not a representative organization make.

This all (above) feeds back into what I initially raised-the nominations and what's happened. And why we are so concerned about the selection process, not to mention what is intended for the committees to which presumably some of us will occupy.

A second issue I'd like to raise while I'm writing to you, which though a different matter is not unrelated to the above. It's an idea about how the government could, and probably must do, in the sense that if it doesn't, no matter how many committees operate, the cause of research and clinical education with regard to chronic fatigue syndrome will remain in a hole. The committees to which you've asked for nominations still remain ad-hoc or standing committees that don't meet often. This deprives CFS of an identifiable "place," a place to contact and get information, and a continuity, which is needed to put any cause, medical or not, on the map. But however important such a place with continuity can be, as symbol, it is far more important to fulfilling functions that ad hoc or standing committees simply cannot.

What I'm referring to is an office, with a small staff, headed by someone who has the respect of the medical CFS researchers and clinicians and patients (not everyone-just lots). Some computers and filing cabinets and telephones, etc.

Here are the vital sorts of things that such an office could do, not only for CFS but for the U.S. with regard to their playing a leading role in this. I would foresee this office utilizing computer technology to store collected information on every published scientific paper having to do with this disease, indexed by author(s), title, and keywords. Similarly, with papers delivered at the several worldwide CFS conferences that tend to take place yearly. Similarly, where possible, with ongoing, not-yet-presented research, if such information can be gotten, and sometimes it can.

This database would allow interested researchers to gather data, making it easier to move us ahead and not reinvent the wheel, help reveal when a critical mass is achieved that might not easily be apparent without applying to such a database of research some software that could elicit such patterns if and when they exist. And it surely would avoid the fiasco of setting up a State of the Science (SOS) meeting that was planned to include people who hardly have the respect of their own fields, fields that have precious little, though not nothing, to contribute to finding a cure or major marker or significant palliative-an SOS meeting that utterly ignored research from among the interestingly promising, exciting areas of research, both from mainstream peer-reviewed journals and from the margins (where lots of important science comes from) and concentrated on what some psychiatrists who always have a theory about all illness is, especially before its true nature is revealed. Psychiatric explanations, as scientific explanations, are among the weakest in the pantheon of medical science, even for the many traditionally psychological illnesses, like obsessive-compulsive disorder, autism, schizophrenia. And I'm not a biological reductionist or a neuroscience sycophant, a popular position these days, even though I am impressed by what these approaches have truly discovered and offer as potential.

Back to the office! It would help enormously (a) to feed into the development of needed/asked for governmental policy, for health agencies and for congress: (b) in the search for private sources of research monies, for we surely need more research to be done and to be adequately replicated; (c) to advertise the availability of grants for CFS research; (d) to make research studies available to be evaluated and criticized, beyond even the peer review process, which itself isn't perfect by far, in any field of medical science, not just CFS-related material; and (e) to set up sorely needed continuing education programs so that more patients would have doctors with some knowledge of CFS. So many of us, in big cities and small towns, simply can't find doctors with any remote knowledge of this disease (except that all-too-famous smirk, one I got from a radiologist just yesterday who I wasn't even seeing for CFS). Having CFS is almost like being sick in a Third World country, even though you're in the U.S. And my Internet friends report the same from some of the other major countries of the world. I've experienced and heard some terrible stories. Things that never should happen and with repercussions that will never be able to be undone. I'm speaking of serious iatrogenic illness through the ignorance of clinicians.

A center of the kind I've described could also help set up government-sponsored conferences, as well as publish monographs and/or periodic newsletters, which would also serve a research, a clinical, and a very essential fund-raising function, allowing the office headperson and his/her committee of advisors to seek monies sorely needed from the private sector.

Dr. Dean, both of the two broad issues I've raised are of tremendous importance, and if I myself can or know others uniquely qualified to be of some help, even just as one-time consultants, I'd be happy to provide what time I could and the names of others-though the nominees you've received contain the names of people that have excellent qualifications, some of them, to do this for you.

But the nomination process and what's happened to it is urgent and worrisome, for the reasons I delineated. We've been dropped like hot potatoes and not treated as sick and suffering and earnest people. Thus, I hope and trust that I'll receive a reply from you quickly. I know you must be busy, but I am too. My life is in shambles as is the case with so many others of us, and we have been waiting and waiting and waiting. And we don't have an infinitude. Like you, like Dr. Koplan, like Dr. Straus, like Dr. Wesseley, we're mere mortals. But unlike you and them we've had to lose the best years of our lives to being sick and unproductive and unremunerated, just drained. Just to write this letter was in some ways nuts in terms of my own health. Yet, en fin, I just had to. Because of the state of things. Because of how we've again been ignored.

I look forward to a reply very soon.

Many thanks.

Sincerely,

Judith Fleet Wisdom

Enclosures (attachments):

-letter to Dr. Morens
-former email of nominations to you
-my curriculum vitae

Footnotes:

1. But, in my estimation, far too infrequently scheduled committees.

2. Relatedly, I actually would like to have nominated several people beyond whom I did. However, with only two weeks notice, for someone who is quite ill, thus is often beset with a harrowingly annoying but busy schedule of doctor, physical therapy, dental, and diagnostic testing appointments, plus time needed to be spent on essential welfare and financial concerns, Dr. Dean, I simply didn't have enough time to reach all the people I wanted to nominate, who I knew would do the most responsible and responsive job. And I don't like to nominate people, no matter how excellent I think they'd be, without consulting with them, especially, again, because they're all sick!

Luckily, however, the very people I'd best like to have nominated were nominated by others. I shan't name names here, but can. The people I have in mind are those who have repeatedly exhibited high standards yet an admirable flexibility in their thinking about chronic fatigue syndrome, which is what's needed to move our cause ahead, instead of having it--as I very much to my personal sadness know--stand still and, in fact, retrogress. They know all-too-well what being sick with this illness is about, are very familiar with the broad range of research being done all over the world, are well familiar, also, with the controversies (scientific and political), and have shown themselves not to be ego-driven, but to be responsible to a vast number of patients via a network of countrywide support groups and online groups.

[ Back to Index ]

Copyright © 2000 Judith Fleet Wisdom