I attended the five-day IACFS conference, January 9-14 in Ft. Lauderdale, and in many ways it was amazing. I am attempting, in general terms, to describe what I heard. I can no longer take notes and listen, so I will miss important things – plus I show bias for my own personal interests. Additionally, it is impossible to attend five days of presentations. So please look for other conference summaries that will be extensive. You might consider ordering the IACFS conference syllabus for $15, or purchase an audio and/or video recording. [See details below.*]
Research Findings, Ideas, Issues, and Impressions
In general terms, many studies looked at exercise intolerance to try to define what happens in the body. The researchers and clinical scientists are developing methods to measure cardiovascular and cardiopulmonary health in CFS patients. This relates to oxygen consumption. Several papers in the main session and in the poster sessions showed that CFS patients’ ability to do work (bike, treadmill) is impaired if one measures how much oxygen is used for the task. It's a mathematical computation based on (age?) and body weight.
Control groups varied. Normal, deconditioned, and patients with primary depression were compared to CFS patients. One interesting study showed that CFS patients will show extreme abnormalities in a next-day second session of exercise. CFS patients do not recover in 24 hours, equaling intolerance.
Patients understand ‘overdoing’ and ‘payback,’ but in research it is wonderful to see U.S. and international scientists defining methods to show what we experience. Over and over again, I heard…THIS is a very abnormal finding. In addition, one study showed that both mental and physical energy expended can cause impairment.
What to do about it? Graded exercise therapy is ill advised. If a patient has abnormal oxygen consumption, muscles will not have enough oxygen. If you push yourself, this will start a cascade of events that lead to relapse. Yet, any kind of movement helps the body maintain some activity tolerance and allows those chemicals recycled in muscle contraction to be stimulated.
Cardiac Involvement & CFS
Along the same lines, it was hopeful to see several studies on cardiac involvement and CFS. This would include work on viruses that seem to target heart tissue (presented by A. Martin Lerner, MD), inflammation and arterial stiffness in patients predictive of cardiovascular risk (Vance A. Spence, PhD), and the complex lecture by Paul Cheney, MD, on “Evidence for Diastolic Dysfunction in the Chronic Fatigue Syndrome Enhanced by Tilt-Echocardiography.” [Full presentation titles are included under “agenda” at the IACFS site (http://www.aacfs.org/).]
Immunology/Infectious Disease Studies Are Back!
One researcher new to CFS presented a wonderful explanation of MD training and the infectious disease model. Jose Montoya, MD, Stanford University School of Medicine, said that traditional training wraps around a short course disease model. A person gets very ill, is treated if possible, then lives or dies. Disease with an infectious onset resulting in long term, chronic illness is not common and is not emphasized in medical school training.
So why chronic illness with infectious onset? Scientists need to look at gene variance and to try to find abnormalities and commonalities in CFS patients to see the disease process.
Montoya also discussed the changing view of viruses. It was thought that one virus equaled one type of illness. (Epstein-Barr virus causes mononucleosis.) Apparently, with much more study on viral infection, viruses in general, and the discovery of new viruses, we know that several kinds of viruses or a combination can cause very similar illnesses. Viruses mutate, and viruses adapt to the host. (That would be you and me.)
How is the variability of the host reaction to viral infection related to genetics? Again, investigations in this area surge forward in all countries. Because the information is very technical and I have no background, I cannot address this. However, the surge represents keys unlocking doors for people with CFS.
Proteomics focuses on the structural and functional properties of proteins and their expression. One investigation poses that a specific CFS-related proteome (like a profile) suggests a common pathophysiology for CFS, FM, and Persian Gulf War Illness. This research is a collaboration among three academic institutions – the Federal Institute of Technology, Zurich, Switzerland; the University of Michigan, Ann Arbor; and Georgetown University (principal investigator Georgetown’s James Baraniuk, MD).
I want to emphasize that thinking about fatigue in scientific terms is changing and is cutting edge. One session was called “New Methods for Evaluating the Fatigue State.” A patient might think “Oh no, here we go again.”
However, the presentations that followed showed a leap in how to think about fatigue – “Spectroscopic diagnosis of Chronic Fatigue Syndrome by visible and near-infrared spectroscopy in serum samples.” This complex presentation from Japanese researchers at the Fatigue Clinical Center in Osaka, Japan, concluded that “Vis-NIR spectroscopy for sera combined with chemometrics analysis could provide a promising tool to objectively diagnose CFS.”
The team was able to determine, through blood analysis, a "complete separation" of 77 CFS patients from 71 healthy controls.
You Knew You Were Sick!
New methods in viral studies using refined technology show further abnormalities in subsets of CFS patients. I missed an entire session on Sunday afternoon devoted to this, but smaller sessions from Wednesday through Sunday highlighted the work. With the support of the HHV6 Foundation , its founders, Kristin Loomis and Annette Whittemore, and their scientific advisor, Dr. Dharam Ablashi, who discovered HHV6, interest is renewed and generated in viral CFS investigations.
Case Definition and Epidemiology
Several sessions were devoted to the various research and clinical case definitions of CFS. As with new medical equipment that enables researchers to look more carefully at donor samples to find a biological marker for CFS, establishing criteria that work in the doctor’s office is a much needed diagnostic tool.
Unless MD's use the Canadian ME/CFS criteria or use their own, gleaned from years of clinical practice, they have no standard to use when trying to discover if a patient has CFS. So, with much lively discussion about including this or that symptom, scientists are trying to find something practical, so we will not have to go to 10 MD's before finding a diagnosis.
A new Pediatric Case Definition was introduced by a panel of international researchers. This is in the development stages, but it looked very good to me. The longer document includes the definition and a preliminary questionnaire that can be used for parents and for a child who might have CFS. My thought was THANKS to Dr. Leonard Jason [director of the Center for Community Research at DePaul University in Chicago], who spearheaded this effort, and to all the MD's who have been seeing kids for 20 years.
AND IT IS ABOUT TIME. How can we begin to look at how common CFS is in kids unless we have a way to define what the beast looks like in this population?
Seven investigators presented in this two-hour session. (I missed the entire session.) As I look at abstracts, I see that increased use of instruments like MRI, SPECT, PET and fMRI, and use of these in an innovative way, show some of the abnormalities in functioning that patients experience on a daily basis.
These may not have practical application if a patient cannot have this testing done, but there are other ways to find loss of functional abilities.
In one study, by Elke Van Hoof, PhD (Belgium), patients performed a standardized exercise stress test, completed neurocognitive tests, and filled out a questionnaire on their functional abilities. The results showed that functional status could be predicted by both the exercise stress test and by testing cognitive abilities. This Belgium team concluded that use of these very common tools to define occupational disability seems valid.
Years ago, a study by John Deluca, PhD [at the UMDNJ-New Jersey Medical School] showed that CFS patients have deficiencies in speed of information processing. At the time, it was one of a few studies confirming what patients say about their loss of thinking skills. At this January 2007 conference, several studies furthered our understanding. The Japanese and Swedish research teams collaborated in a comprehensive look at a neuro-molecular mechanism leading to chronic fatigue. They conclude that CFS is not only a functional disorder, but also an organic disorder.
Not to Mention Presentations on Advocacy Issues
Now that I am looking at the abstract book, I find many interesting studies. Perhaps I will write a second summary. I did not even mention the advocacy issues that were addressed for two days and simmered for five days. You know, after I returned from the first Ft. Lauderdale conference in 1994, I devoted a 90-minute support group meeting to summarizing the research. We had 40 people attending! Now, I could not do that because there is far more research in many more areas and the Wisconsin CFS Association no longer has a Madison support group. The dynamics are so different…
The Question of NIH Funding
I know I will post about NIH [National Institutes of Health] funding. I have two new FOIA's [reports issued on request under the Freedom of Information Act from the Office of Management and Budget]. The bottom line on these is, YES, we have 7 new CFS grants. This equals the possibility of renewing 7 grants, so the situation is better. The downside is that the NIH budgeted $6 million, and the ‘new money’ offered the possibility of $4 million, so one would think that we would have $9 million to $10 million spent on CFS in 2006. (I would take $8 million.) However, it appears to be the same $6 million we have had for years. The FOIA documents are on the WI CFS website at www.wicfs-me.org.
Dual Patients and Professional
The conference was delightful and perplexing:
n PANDORA people worked many long hours and far into the morning the night before the patient conference, which had about 300 attendees. For me, meeting patients cements my commitment to work on CFS issues as long as I am able. What a joy!
n The scientists and MD's (about 300?) are committed to CFS research. It's neither a high profile career in science, nor do they gain great wealth from researching an underfunded, misunderstood, cutting edge illness. When the MD's go home, they do not have support circles of colleagues who admire their work and share stories. The ICONS in our community show wear and tear, and holes in their shoes just like us.
I am pleased to have been a part of the 8th IACFS conference and I am looking forward to the next event.
We still have few treatment studies for CFS. Several companies [including ProHealth, Inc.] exhibited products, and their studies showed the positive effects of supplements in CFS and FM patients.
– Pat Fero, MEPD
* On ordering recordings of the conference: The recent 8th biennial conference of the International Association for Chronic Fatigue Syndrome (Ft. Lauderdale, Florida, USA, January 10-14, 2007) was the first to be professionally taped. The taping was done by Insta-Tapes Media, based in Idaho.
If you are interested in purchasing a recording, five are available: one for each day of the three-day professional conference and one for each day of the two-day patient conference. The recordings are available in two optional formats:
1. Mp3 audio (sound only), and
2. DiGiVision DVD Rom. NOTE: This option requires a computer with Windows Media Player. It does not play on TV. It is a video that shows the speaker on half the screen and the Power Point slides used on the other half, and of course includes the audio.
To check on the prices for these options and to order (mention order code CFS-061/062), you may go to the Insta-Tapes IACFS website at http://www.instatapes.com/IACFS. You may also phone 1-800-669-8273, or fax 1-888-346-8273. Their physical address is Insta-Tapes Media, P.O. Box 908, Coeur d'Alene, Idaho 83816-0908 USA.