Thanks to Pat Fero for this report. This new information again proves that CFS is a very real, complex medical (not psychological condition) that needs serious research.
An informal IACFS conference summary - first take.
Pat Fero, MEPD
I attended the 5 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 5 days of presentations. Please
look for other conference summaries that will be extensive. You might
consider ordering the IACFS conference syllabus for $15 or choosing audio
and/or video options. Call Insta-Tapes Media at 1 888 346 8273 for
ordering and pricing information.
Research findings and ideas:
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
those 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 = intolerance.
Patients understand "overdoing" and "payback," but in research it is
wonderful to see US 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 O2. 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
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 (Martin Lerner), Inflammation and Arterial stiffness in
patients predictive of cardiovasular risk (Vance Spence), and the complex
lecture by Paul Cheney on "Diastolic Dysfunction in the Chronic Fatigue
Syndrome enhanced by Tilt-echocardiography."
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, 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 = one type of illness.(EBV
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.)
Genetics/Proteomics. 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, Federal Institute of Technology, Zurich,
Switzerland, University of Michingan, Ann Arbor and Georgetown University
(PI James Baraniuk).
Medical Technology. 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, a "complete separation" of 77 CFS patients from 71 healthy
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, the 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 a criteria that works in
the doctors 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 do 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
questionairre that can be used for parents and for a child who might have
CFS. My thought was THANKS to Dr. Leonard Jason 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?
Brain Function. Seven investigators presented in this 2 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, the Van Hoof Elke (Belgium), patients performed a
standardized exercised stress test, 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 Deluca study 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
2007 conference, several studies furthered our understanding . The Japanese
and Swedish research teams collaborated on 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.
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
advocacy issues that were addressed for 2 days and simmered for 5 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 we no longer have a Madison support group.
The dynamics are so different.....
I know I will post about NIH funding. I have 2 new FOIA's. The bottom line
on these is... YES, we have 7 new CFS grants = the possibility of renewing
7 grants, so the situation is better. The down side is that The NIH
budgeted 6 million dollars, the "new money" offered the possibility of 4
million dollars, so one would think that we would have 9 to 10 million
dollars spent on CFS in 2006. I would take 8 million. However, it appears
to be the same 6 million dollars we have had for years. The FOIA documents
are on the WI website at www.wicfs-me.org.
The conference was delightful and perplexing. 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 a long as I am able. What a joy!!!
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 that
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.
Dietary supplements/prescriptions. We still have few treatment studies for
CFS. Several companies exhibited products and their studies showed the
positive effects of supplements in CFS and FM patients.
After all these studies showing major compromise of bodily systems, it should be clear that if anyone needs their heads examined, it's the doctors who continue to deny CFS is real, and not the patients.
One of my doctors claimed he didn't take me seriously because "nothing she said made sense". In fact, everything I told him made perfect sense in the context of CFS. He just couldn't make it fit his desired diagnosis of depression, and rather than considering that his diagnosis might be wrong, it was easier to put the blame on me for confusing him.