Report on the 2001 AACFS Conference
by Frank Albrecht, Ph.D.

Frank's
Issue #6
February 5, 2001


Contents:

Introduction

I. Personal

II . Prognosis in Children and Adolescents

III. Treatment for CFS

IV. Theory of the illness

V. The name - Again!


Introduction

I try to make my newsletters a little fun to read. But this one is full of important stuff, so it's pretty dry and factual. Sorry.

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I. Personal

I sent out my last newsletter on October 29. Since then much of my spare time has been devoted to analyzing data and writing the draft of an article about the natural course of CFS in adults. This came out of a work initiated and carried on for six years by Mette Marie Andersen MD and her associate Henrik Permin MD at the University of Copenhagen in Denmark. Last month I had the honor to present the study as a poster at the American Association for Chronic Fatigue Syndrome (AACFS) conference in Seattle. Our conclusion is simple enough-- here it is quoted from the abstract:

CONCLUSION: CFS patients meeting CDC criteria exhibit severe, long term functional impairment. Substantial improvement is uncommon. Patients may get better in some ways while worsening in others. Allergies and some aspects of cognition tend to worsen. Emotional adjustment often improves independently of the course of the illness.

In other words, we found what most adult CFS patients already know, that the illness tends to fluctuate without really changing. The finding about emotional adjustment implies that there is no connection between these problems and CFS.

By the way, my associate Mette Marie Andersen has a wonderfully informative web site: CFS - Information International www.cfs.inform.dk

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II. Prognosis in Children and Adolescents

This year, for the first time, the AACFS gave a bloc of time to children and adolescents. There with four 15 minute presentations on this topic. There were also poster presentations dealing with children and adolescents.

There were two important studies of prognosis. David Bell contacted young adults he had seen 13 or more years earlier when they were less than 18. He found that 80% had a "satisfactory" outcome, though the majority of these still had mild or moderate symptoms. Only 20% were still ill or very ill. Catherine Rowe (from Australia, not to be confused with Peter Rowe of Johns Hopkins) presented a follow-up 200 CFS patients seen as adolescents, given ordinary medical care, and contacted from 1 to 9 years later. When contacted, 30% felt they were well and 60% were able to study or work full time. Sixty-five percent thought their illness could have been managed better, citing needs for earlier diagnosis, earlier information about the illness, more understanding and acceptance by physicians, more understanding and acceptance by family, friends, and (especially) school staff, as well as better self-management.

It is widely believed in the medical community that diagnosing CFS in children and adolescents encourages unnecessary disability. This belief is based on prejudice about the illness, and upon unfounded assumptions about children's motives and impulses, rather than upon evidence. It is nice to see that young persons who are doing well report that earlier diagnosis would have been helpful.

These and other studies show an encouraging prognosis for children with CFS, at least as compared with adults. I have my doubts. Many of Dr. Bell's cases come from a cluster (a localized epidemic) and cluster cases may have a better outcome, on the average, than sporadic (non-epidemic) cases. That seems to be the case with adults. I don't know anything about Dr. Catherine Rowe's cases, so I can't comment. But I do wonder if a number of the apparently recovered persons in both studies will not later have relapses, and become as sick as they ever were.

It's also not clear how improvement or recovery should be determined. Some of Bell's patients who reported themselves well still had significant symptoms. The same seems to be true in Catherine Rowe's group. In the study of adults that I did with Mette Marie Andersen and Henik Permin (see above) we found that our longitudinal data (based on asking exactly the same questions at diagnosis and five years later) was often inconsistent with self-reported improvement. In other words, a person who said "I am better now" might actually be worse in terms of functional ability or symptoms severity as measured longitudinally. The same was true of persons who said they were worse now: some of them were actually better on the repeated measures (at 0 and five years) in terms of activity, social life, and so forth. So simply asking people if they are better or worse may not be a good way to get a picture of how they are doing.

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III. Treatment for CFS from the AACFS

Several studies reported symptom improvement using Ampligen. Ampligen, a controversial experimental drug, is an unstable form of RNA that has to be delivered by IV infusion at least twice a week for many weeks. In some cases it has produced long lasting improvement. But it is not yet an approved drug in the United States so it is available only to persons participating in clinical trials being conducted by its maker, Hemispherx Biopharma. It is more readily available in some other countries, but the treatment is both protracted and very expensive.

Modafinil (also known as ProVigil) is a drug designed to combat excessive daytime sleepiness and approved for treatment of Narcolepsy. A study by KW Rammohan of Ohio State University reported that the drug reduces fatigue in Multiple Sclerosis. This leads one to think it may do the same in CFS and other fatiguing illnesses.

Etanercept is a tumor necrosis factor (TNF) receptor, approved for use in Rheumatoid Arthritis. It blocks TNF from binding to its natural receptors. (TNF is a pro-inflammatory cytokine suspected of playing a role in CFS. Cytokines are the immune system messengers that make you feel ill when you have the flu.) K Lambrecht of the University of Minnesota Medical School presented a pilot study of Etanercept in CFS, showing significant improvement in fatigue, lymph node pain, and headache. There were trends toward improvement of other symptoms. Patients should not rush right out and try to get some of this stuff, because Lambrecht's study had only six patients and no control group. You can be sure, however, that placebo controlled trials will follow. This is a very exciting development.

Finally, Nancy Klimas of the University of Miami provided the only national news story to come out of this conference (so far as I know, at least). Klimas extracted lymph node calls from CFS patients. She then grew the extracted cells from 11 patients in her laboratory, culturing them in a way that reduced the presence of pro-inflammatory cytokines. After 10 to 12 days the cells were infused back into the patients who had donated them. These patients were then monitored for 24 weeks and did show significant improvements both in cognition and in functional level.

That's pretty amazing, I think. But it's not going to produce a practical treatment anytime soon, so don't hold your breath.

There were also reports of functional improvement following Cognitive Behavior Therapy (CBT), intensive inpatient rehabilitation, and other such methods. Several people in the audience tried to say that these approaches should be termed "management" rather than "treatment" because they alter ways of coping rather than altering the illness. One very annoyed woman, whose name I have unfortunately forgotten, tried to point out to a CBT researcher that she improved quite a bit after she took a community college course in coping with CFS -- and was they going to call that "treatment?" The presenter didn't seem to get it, but I agree with her. CBT and other methods of psychological and educational management are very useful in all chronic illnesses, including cancer and heart disease, but aren't usually thought of as a treatment for those conditions.

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IV. Theory of the Illness

I'm going to be short and dogmatic on this topic. This is how I see it right now.

Papers presented at the AACFS leave no doubt that CFS involves extensive biochemical abnormalities, considerable imbalance in the immune system, reduced responsiveness in the sympathetic nervous system, reduced ability to use of oxygen when exercising, and blood flow problems. We do not know what is the underlying cause (trigger) for the illness, but we do have some hints as to how these problems are connected. We also have indications from twin studies that the illness is substantially heritable.

Biochemically there are abnormal proteins and abnormal RNAs. Of particular importance is abnormal cleavage of RNase into a low weight form, RNase-L. This in turn is associated with a cascade of biochemical abnormalities which are just beginning to be explored. It appears, however, that these changes are linked to reduced ability to use oxygen and to excessive production of inflammatory cytokines. Also seen in the illness, and certainly somehow related, is a reduction in responsiveness in the sympathetic nervous system, leading to problems of blood flow, heart rate and blood pressure, to chronic stuffy nose and sinus problems (with resulting sore throat), and to low levels of the neuro-hormones we need when coping with ordinary physical stress.

There abnormalities work together to produce (depending on the individual constitution) flu-like feelings, problems in body temperature regulation, excessive fatigue and especially post-exertional fatigue, difficulty dealing with the physical stress that comes with upright posture, sore throat, sleep disturbance, cognitive problems, a variety of kinds of pain, and other symptoms whose presence and severity varies with the individual.

Now all we have to do is fix it.

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V. The Name -- Again!

The National Institutes of Health Change the Name Workgroup held an open forum at the AACFS Seattle conference. In addition this issue was discussed in the private, clinician to clinician meeting. I attended both these events.

Almost all the clinicians believed the name is a problem and that it should be changed. A smaller number but still a majority thought the change should be made this year. Those who thought it should not be changed this year seemed to think no acceptable new name is available.

At the name change forum everyone changing the name right away, if not yesterday. A clear majority favored the old name, ME. A smaller number favored other names, the most common being Neuroendocrine Immume Disorder (NEID). Bryon Hyde of the Canadian Nightgale Foundation suggested taking a vote but the chair did not pick up on that suggestion.

ME currently stands for Myalgic Encephalomyelitis, a British name that is also used in many other countries. ME is a much older name than CFS and has its own entry in the International Classification of Diseases.

The problem with ME is not all cases have myalgia (muscle pain) and the disease has nothing to do with inflammation of the brain (encephalomyelitis). That is an old theory that was wrong. As a result a lot of people favor changing ME to mean myalgic encephalopathy, meaning a brain pathology with myalgia. Dr. Shepherd of the British ME association suggested we instead use Myo-encephalopathy, muscle problems with brain pathology. I thought this was a good idea, because certainly there are always muscle problems, whether pain or weakness or both, in ME/CFS.

There, I did it! ME/CFS! That's what I think we should call it, for now, starting now. Everyone should do that, immediately!

What I said at the Forum was that I do not believe any name but ME can be sold at this time to the world-wide stakeholders . Neuroendocrine Immume Disorder (NEID) is a reasonable name from the point of view of current science but I don't believe it is likely to gain general acceptance. Even if there is an "official" change only some people would use it. Some would use CFS or CFIDS and many others (especially outside the US) would stick with ME. I think we'd end up worse off than we are.

But just ME would hard to sell in the US, where almost no one has ever heard of it. So ME/CFS seems to me to be the way to go, for now, for everyone, as a transition while we wait for the Name Change Work Group, the CFS Coordinating Committee, the NIH, and the new administration to agree on an official change--which could be years from now. Till then let's do it ourselves: ME (Myo or Myalgic (take your pick) plus Encephalopathy)/CFS.

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Copyright © 2001 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 Frank Albrecht.
Other uses are free but require permission. [Note: it is reprinted here with permission.]

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franka@bluecrab.org

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