Frank's
Issue #5
October 29, 2000
Contents: I Personal
II . Change the Name Progress
III . State of the Science Conference
I. PersonalI sent out my last newsletter on August 20. On the 23nd I had an operation for prostate cancer. The prostate was removed and it appears (so far) that the cancer has not spread. But I did get slowed down for a while. I'd never had surgery before so it was a great shock to me that I tired so easily for many weeks afterward, and that I would get serious brain fog when I got tired. It was a different kind of fogginess than any I had experienced before, but it seemed to resemble descriptions of CFS brain fog. "Empathy training" my wife, Michelle, calls this. She and Sarah (now 18) laughed at me when I complained indignantly about not being able to think straight. "Now you can join the club," they said. Brightening their their days is usually a pleasure but not in this case. Now that I am fully recovered I do NOT want any more empathy training!
This reminds me of the mysteries of fatigue as they were explored at the recent CFS State of the Science conference. For more on this see topic III below.
II Change the Name Progress
I know several people who are on the NIH change the name workgroup, and I got a chance to talk with the chairperson, Carol Lavrich, at the State of the Science (SOS) conference. Earlier I contributed a little to the process by responding to John Herd's request for input about problems with the name. Here is what I wrote him:
"Yesterday my daughter Sarah, 17, mentioned that she does not know how to talk about what is wrong with her to some new friends she has met. She tries to hide that something is wrong but as she can't dance or walk around much, can't stay out very long at a time, and often has has to sit down even if that means sitting on the ground, she eventually has to try to explain. But she said she never says she has Chronic Fatigue Syndrome because 'people look at me funny' when she says that. 'They think I must need a lot of rest but then I will be OK.' She says she tries to explain but 'they never get it' and usually 'they just get weird about it.' She hates the name and feels that she's better off just to say no one knows what's wrong with her."
At the SOS I ran into two other parents whose kids never use the name, for the same reasons. This is certainly an intolerable situation.
Carol Lavrich is the healthy parent of a YPWC. She holds an executive position with the American Red Cross and has the kind of managerial and coordinating experience that make her a good choice for chairing this committee. I feel good about this.
The committee's report to the NIH CFS coordinating committee on October 25 reads in part:
"The Workgroup is unanimously in favor of making a Name Change.
"The label "CFS" does harm to patients due to misperceptions about the illness that largely stem from its trivial sounding name.
"CFS is an unacceptable term because it is medically vague and overly simplistic. It is frequently confused with the ubiquitous symptom of chronic fatigue which is common to many diseases.
"There is sufficient scientific evidence in the medical literature to support alternative names for CFS."That tells it how it is, it seems to me!
Carol tells me that the committee has focused on several candidate names. When I know what these are I will write a newsletter about them, and will ask people to write me back, or write to the committee, about their reactions.
III State of the Science (SOS) Conference
"SOS" is the international distress code and CFS research is certainly in distress, so these letters make sense for the occasion. And to some extent the call has been answered.
The CFS-SOS conference was organized in a distinctive way, one I'd never seen before but which worked effectively. Each segment started with a presentation by a researcher who had studied and published on CFS. Then there were presentations from other researchers in the same subject matter area (endocrinology, immunology, etc.) who had not studied and published on CFS. What these researchers had done, however, was read the CFS literature relevant to their specialty. So although they were newbies to CFS they were able to make reasonably informed comments.
For instance, on the topic of fatigue we first heard from Dedra Buckwald, MD, Director of the Seattle CFS Research Center. Dr. Buchwald is also the immediate past President of the American Association for Chronic Fatigue Syndrome. She was followed by Lauren Krupp, MD, who talked about fatigue in multiple sclerosis and Seven Passik, Ph.D. , who talked about fatigue in cancer patients. When the topic was sleeping problems the first presenter was Harvey Moldofsky, MD, who has done extensive research on the "fragmented" and "non-restorative" sleep in CFS. He was followed by Roseanne Armitage, Ph.D., who has studied the effects of anti-depressants on sleep, and James Krueger, Ph.D., who told us more than I was able to absorb about hormonal problems related to sleep.
This pattern was followed throughout. Other topics considered were neuroendocrinology, cognition, chronic pain, immunology, orthostatic intolerance/neurally mediated hypotension, and functional status/disability. The overall effect was to produce many new perspectives for CFS experts to consider, and to recruit a variety of respected medical experts to an enlightened interest in CFS.
One goal of the conference was to increase well-informed interest in CFS among expert researchers. That goal certainly was accomplished.
Another goal was for CFS experts to gain a greater understanding of the pathophysiology of the illness. I can't speak for the experts. But as an unusually well-informed non-expert I unfortunately cannot say that I now understand CFS better than I did. But I can say that I now have an improved appreciation of why the subject is so difficult. CFS involves complex interactions of the endocrine, neurohormonal, immune, and central nervous systems. The basic science of these kinds of interactions is incomplete, murky, and rapidly changing. So the illnesses that arise from them (including Fibromyalgia, Irritable Bowel Syndrome, Multiple Chemical Sensitivity, and perhaps also Gulf War Syndrome, as well as CFS) are not going to be well understood until the basic science underlying them is more advanced.
This may sound discouraging but I do not see it that way. These are hot research areas that are being clarified pretty quickly. In addition, effective treatments do not have to wait upon full scientific enlightenment. Vaccination against smallpox, after all, was discovered 300 years before the viral understanding of the illness was developed. Current research is already suggesting new ways of looking at treatment and this tendency will certainly intensify.
I noticed, however, only one practical suggestion in the presentations. This was in regard for medications for sleep. Dr. Armitage suggested, based on her sleep studies, that low dose trazadone (Desyrel ) or nefazodone (Serzone) tend to produce better quality of sleep for women than SSRIs such as Prozac and Paxil. Between the two, nefazodone produced a more normal sleep pattern. Men, on the other hand, benefit from trazadone but are more likely to do well with SSRIs than women.
I didn't think the conference was perfect. There were presenters I would have preferred to some of those chosen. A few of the outside experts seemed not to have done their CFS assignments, and few if any seemed aware that there is a problem about the name. I very much disagreed with some things said by speakers or discussants. So I could advance many criticisms. Overall, though, this was a serious, informative, and useful event. It certainly will stimulate productive research, and also will increase the visibility and credibility of CFS within a variety of medical and research communities. For this, and for the smooth functioning of the conference, I extend my thanks and congratulations to the organizer, Donna Dean of the National Institute of Health.
Copyright 2000 by Frank Albrecht. This text may be downloaded for personal use. It may also be quoted and may be forwarded in entirety or in part to other persons, provided it is attributed to me. Other uses are free but require permission.
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