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A Commentary on the State of Science Conference & CFSCC Meeting Information by Judith Fleet Wisdom

September 21, 2000

On September 20, 2000 Donna Dean, Ph.D. posted to her list that she started a while ago in response to the concerns over the February SOS meeting that David Morens, M.D., was in charge of--a list that coincidentally started virtually a day or so after my open letter to Dr. Dean, a letter that was faxed to her privately the day previous to it's appearing on my website and announced on CO-CURE.

Though Dr. Dean never replied to me despite the serious issues I raised on our behalf, the list she started has continued. It's mostly, as you know, since it's usually if not always reposted to CO-CURE, posts of announcements of what the DHHS has planned or is asking, with regard to their notion of what's to be done to make the government work for us re CFS.

Many of the posts I and others have found very off-putting, since they continue the tradition of boxing patients in to doing and participating in meagre, meaningless, or no ways, on committees that themselves are inadequate to the task of moving research, physician education, and concrete help while living with this dreadful illness.

The recent post inviting us to take advantage of the special offer of $149 for hotel space, but to hurry or lose out on this fine offer, to come to the SOS conference. We are also asked to consider writing a piece to be vetted for a five minute testimony at the CFSCC meeting, but only to speak on two topics, which are not the topics that the CFSCC meeting is about!. (That apparently is not considered needing of input from patients at large--just the designated hitters--the nondemocratically, nonrepresenatively chosen patient activists, so-called.)

As a result I wrote the following to Dr. Dean's email address, listed on her post to us. It was returned, as others have been. For. apparently that address is just one way, from her to us, and not giving us a chance to give her criticism, suggestions, support.

I could fax her; but I don't feel like doing so. My back hurts very badly and it would take lots of effort that I don't have right now. And Dr. Dean doesn't seem to show any interest in answering my faxes or even taking information via email.

The issue is thus, in my estimation, one I want to share with my colleagues in illness, for you to hear, think about, disagree, agree. It's a serious matter and deserves airing. If you agree, you might wish to write your congressmen about this. If you disagree and feel that my evaluation is off the mark and that the DHHS is working in a way you're pleased with, then you'll proceed going along in the way you think best.

Sincerely,

Judith Wisdom

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[MY EMAIL TO DR. DEAN--RETURNED]

How can someone long ill with a chronic illness like CFS, whose been separated from my source of income because I'm so disabled by the illness, and thus in debt because SSDI doesn't come near covering rent, meds, and food, pay $149 for a room and $ for travel?

If $ isn't awarded for good epidemiological study to help lead lab researchers and clinicians, as it can, most especially with complicated illnesses, we will stay ill year after year after year. And those of us who fell ill before saving for retirement or who don't have a mate bringing in the bacon, are in debt for food, meds, and rent. Not to mention other necessities. Not to mention an occasional book or record or videotape to keep au courant and have a bit of a life.

And we're told of getting this great deal of $149 for hotel room.

Even the SSA admin has research excellently done on what happens to people disabled and dependent. on SSDI, about how they fall into debt , poverty in extremis, use all their energy on the intractable, wearing welfare system, that often prevents you from caring for your health. Have you , Donna Dean, looked at that study? I can provide the reference; but just call over there. I'm sure you have such connections, and it would save me more typing.

I'm offended at the 5 minutes on a tape offered to us, with the assumption I have access to a camcorder, just as you assume $149 is possible for many of us--a good deal in fact!. Besides, can 5 minutes allow any one of us to convey what's inadequate about social services? Not to mention that we wouldn't need them if our disability income was high enough or we were given vouchers to buy the services wealthy sick people can. They do exist if you have the money to pay for them. They exist barely and meanly and utterly inadequately if at all if you don't have the money to pay for them.

BUT, to convey the meat on the bones of this horrid situation cannot be done in five minutes in any language by a well person, not to mention that we are ill and speaking in public is stressful. And speaking on a camcorder requires as much time, not five minutes, and needs someone to afford a camcorder or be willing to bother a friend who is already doing too much for you, putting your friendship on the line. Am I going to ask someone to tape me with their camcorder when I need to hold my "asks" for getting me to the doctor or bringing me some food? Donna, you must know that friends are important as a source of pleasure and intellectual stimulation; but if all you do is ask favors or help of them, frienships suffer. You become a charity case not a friend!

And while I don't know how representative I am, even though most of my friends make very good incomes like I was and would be if not hit with CFS, none have a camcorder.

To assume money for $149 rooms and camcorders suggests that you don't know the alogorithm for SSDI, which for someone who went for a Ph.D. as I did, and falls ill before they're 70!, gives them (me, for example) an income that no one can live on after a year or so. My years in school didn't count as quarters for figuring out disability, though I worked very hard and also worked part-time in the library and as a secretary who couldn't type very well but did have a good phone manner and made good coffee!

If any of us had savings upon falling ill (I did), and many of us hadn't had the chance to accumulate when we fell ill, they're long gone. $I couldn't spend $25 for a night in a dive in D.C. given the cost of this illness and disability income, and you should know that, and that you show no recognition makes me extremely uncomfortable that you are in charge of things related to this chronic illness. And I'm not here touching on issues of pathogens or the centrality or its lack of cognitive behavioral training to get us up and moving. (I maybe could use some to keep me from moving too much after I reach that mysterious and interesting upper limit of activity no matter how attenuated the grading is that's used to reach it!)

And petty though it is, you really should distinguish your M.D.s from your Ph.Ds. It's correct form and important re understanding. E.g., Donna Dean, Ph.D. or Anthony Komaroff, M.D. But "Dr. Arthur Lawrence, Assistant Surgeon General, sounds as if he's an M.D.; we don't even know what his doctorate is in.

Have you any knowledge of what excellent epidemiology can reveal about the nature of a diagnosis in a population? If you don't it's criminal. If you do and haven't hired the best and given the money needed for a fine and large sample with a good staff and proper computer software to analyze, as well as sociologists and psychologists and medical docs familiar with CFS to help construct the study, you should be ashamed.

Epidemiology isn't prevalence and gender and age. It is a valid method of medical inquiry and preface to lab and clinical studies, which often can eliminate barking up foolish hypotheses, which happens when lab researchers don't have the advantage of the sophisticated information that epidemiological studies can and do reveal.

I hate the expression "get real." But it really comes to mind when I read your (DD's) posts to us, and read of the goings on on your watch.

It's a fancy mom and pop operation, with one exception. The consequences. I'm on the phone dealing with welfare and fending off bill collectors while I should be getting treatment and care and being able to rely on health policy makers to make sure the best is being done to get me better.

People die. But folks responsible for finding cures, though they need to be well, they also need to know what's what about how to go about it. Instead of insulting us with your lack of awareness and lack of sponsoring the basic research we desperately need.

I hope everyone enjoys their $149 specials. And I wish luck to anyone who manages to say anything meaningful to improving our lot in five minutes. Both are travesties and insults to what we're up against.

Judith Fleet Wisdom