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CDC CFIDS Teleconference September 18, 1997 -- Review and Evaluation by Judith Fleet Wisdom, M.A.

I assume the real possibility that as time passes and I hear others' reactions, mine will change. But for those of you who didn't see/hear this conference, let me give you my very immediate impressions.

One important caveat. This conference must be evaluated, I think, as I also believed during leaks occurring while it was in the planning stage, not primarily for its science, since most people with CFIDS (PWCs) and those who've closely followed the field are already pretty well-educated in terms of the latest medical literature, or by the years of experience conversing about it, and, mostly, being sick with it.

What is most important in evaluating it, is how medical (possibly fairly CFIDS-naive) clinicians and media folks will come away from this conference. For it represents one of the first, if not the first, governmental attempts to educate the general medical population about this disease, a disease that has devastated the lives of so many, most of whom have been subjected to medical ignorance, prejudice, and dismissal. And, unfortunately, just as suspected, the conference turned out to be so much less sophisticated medically than what is published about this illness in the peer-reviewed medical literature, that not only did I learn nothing medically I'm afraid what the medical community learned was counter-productive. (There of course was absolutely no mention of effective alternative health care measures used successfully by many seasoned CFIDS doctors for their patients, albeit not with universal success, which is hardly a criticism since it is similar to the picture found with traditional medicines.

What worried me about the conference most (as well as being a POSSIBLE source of hope) was what I saw as a bifurcation between the actual statements, as per Dr. Anthony Komaroff (a well-known CFIDS clinician, associated with Harvard Medical School), that based on his clinical and research experience, that CFIDS is a biologically-based disease BUT that the modes of investigating/testing these biological factors in patients were of little-to-no use in guiding treatment. Such testing was in fact discouraged, despite the fact that many reliable CFIDS doctors and patients have found some of them useful in guiding helping treatment, even if it's only palliative and not cure. When you are suffering, palliation can be nirvana. Not to mention the value of these tests to convince welfare agencies and disability forums of your illness. As just one small example, some people are finding that the identification of the existence of certain gut bacteria has lead to helpful treatment. Absolutely nothing of this sort was even hinted at.

But what was strikingly the worst aspect of the conference was that there was no mention of anything other than the most routine, lowest common denominator treatments.

The main treatments suggested as being useful were NSAIDS, low-dose tricyclics, CBT (a la the way Sharpe et al. practices it), physical therapy (but physical therapy they admitted wasn't readily available, since most physical therapists don't understand the exercise intolerance of CFIDS, which includes but is definitely beyond mere deconditioning--thus a treatment not at all widely available, to put it mildly), and, as if it were different from physical therapy, exercise! (This really confused me, and was Benjamin Natelson's great contribution.) Oh, and as per Komaroff, there was the importance of listening and explaining. I should say that none of these are bad ideas but NONE are in any way, shape, or form significant interventions for so many of us, especially the sickest. And of course treatment for NMH was thrown in but outcome was downplayed.

Putting myself in the shoes of a regular doc, which I was very experienced at doing on a daily basis in order to carry out my work before ill, I strongly suspect that despite the information provided by the conference about the differences between the cortisol patterns in depression and CFIDS, and Straus's (of the National Institutes of Health in the U.S.) information the low-dose hydrocortisone was risky (depressing adrenal function) despite low cortisol in CFIDS (as opposed to the pattern found in depression), and that what probably needed to be pursued to achieve the same effect re supplementing the too-low cortisol in us (which they related, interestingly, to increased inflammation) was something not yet available--the direct manipulation of enhancement of corticotropin-releasing hormone, which is not yet found to be do-able.

Infectious agents (like mycoplasma incognitus, mentioned above) as causes or serious opportunistic agents were utterly ignored, and the admittedly thorny issue of contagion was over-simplified and then dismissed out-of-hand. (My personal opinion waxes and wanes on the latter, but I think infectious agents remain something that must be pursued with great vigor, given lots of the current and most exciting research.

So the lacklustre very wimpy portrayal of that aspect of our disease was represented in what I deem fair to characterize as a clinically irresponsible way, giving little help to doctors in treating this complex disease to relieve their patients suffering, and giving little perspective of the vast areas of exciting and responsible research that suggests its serious biological basis. Which information does appear in the respected journals and at the serious medical conferences on CFIDS, such as the one planned for February in Sydney, Australia.

At the end of the conference, I had a very ho-hum feeling. Yes, they said it was serious. Yes, they tried hard to say it wasn't all in our heads. But, at the end of the day, they showed no vigor with respect to the various studies that have shown physiological abnormalities nor the other physical treatments that have helped many. And though lip-service was given to the importance of different degrees of disability, different length of time ill, different constellation of symptoms, little was said about the importance of these differences in terms of research studies, testing patients differently, and different treatment strategies and efforts.

If I were to go to a doctor exposed to this conference, he or she would be totally and utterly useless to me. Utterly.

The only conceivable benefit I came away from the conference with was the possibility that some people (docs and media folks) may come away with the sense that this may very well biological, but even of that I'm not absolutely sure. That , because of what seemed like, as I said earlier, the bifurcation between acknowledging that, on the one hand, it is probably a biological not psychological disease and on the other, a virtually nihilistic and nonspecific approach to biological treatment, as well as one that emphasized that the patient really needs some psychological help, which they claim will help patients be more vigorous and active. (They mistakenly fancy this approach up as being more effective than most patients find it to be over the long run and which these docs call it, improperly, cognitive behavior therapy, a therapy which it is not--a topic I've written about elsewhere.)

I hope I am wrong about the impact of the conference. Truly. I hope instead that it will be the start of something that causes this illness taken more seriously. But I cannot allow those hopes to distort my report and evaluation. My immediate after-conference feelings. All I can do is not be unhumble or strident about my initial evaluation.

________________________
Judith Wisdom, a sociologist of medicine, is quite ill with CFIDS;
but before being afflicted with this disorder was the director of
Psychosocial Training in Family Medicine at a large urban teaching
hospital in the U.S.

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Copyright © 1997- 2000 Judith Wisdom
Published September 18, 1997