Day One: Patient Conference (March 12, 2009)
Today's agenda was the "Patient Conference," intended to provide an overview of the current state of research and treatment of CFS. Current and former IACFS/ME Board members were the speakers and sessions ranged from broad to quite specific. At the end of the day, all the speakers returned to the podium to address questions that members of the 220-person audience had submitted on note cards. A documentary now in production, "Invisible," was shown and a patient reception and dinner followed.
Suzanne and I wished to return the warm hospitality shown to us last spring by the CFS research group in Japan, so we hosted a small dinner in honor of the five members of the group who travelled across the ocean to participate in the meeting. It was an enjoyable evening and a good way to catch up with colleagues who had travelled so far to attend.
I hope you'll look at the photo album we've assembled and take note of the captions to put faces to names you might recognize.
Although today's presentations were not peer-reviewed, and therefore the content didn't have to pass "muster" with any authoritative group, I thought you might like to read a few tidbits shared by those who took the podium today (Thursday). I present them here in no particular order, from my notes. I tend to think in "threes" so you'll notice that grouping:
- Subgrouping patients by symptom clusters and positive findings (infection, autonomic problems, etc.) is the way forward for CFS and will help to make treatment more effective
- Evidence pointing to problems with energy metabolism is "hot" again
- Infections with viruses and other agents (like Lyme) are important, but the science is still not "mature"; tissue culture tests are more meaningful than antibody tests, but are harder to get done well
- Learning how to find your "energy envelope" is one of the most important coping strategies you can employ in living better with CFS
- Although it's tough to do, resetting expectations for what activities you can manage is an important aspect of healing
- Finding low-energy enjoyable activities can contribute to an improved sense of well-being
- Try very, very low doses of the drugs recently approved for fibromyalgia pain (Cymbalta, Lyrica and Savella); most CFS patients can't tolerate the doses used for patients with FM only
- High dose vitamin C (4000 mg per day) and CoQ10 (100 mg per day) can be helpful for relieving fatigue and brain fog
- Almost every patient will find some benefit to regular massage therapy -- if you can afford it!
- There are lots of opportunities for patients to participate in research. Check www.clinicaltrials.gov.
- Many of the imaging techniques being used in CFS studies right now (MRI, SPECT, MRS, fMRI, PET, CT) are still only useful in research and individual patients should not seek a certain doctor just because they can order these studies -- it's still too early to know what they mean for you
- Genomics, microarray studies, Genome Wide Association Studies and newer imaging techinques all hold tremendous promise in uncovering more useful information for the diagnosis and treatment of CFS
Real world advice:
- "You are still the same wonderful person you used to be before you got sick!" -- Dr. Gudrun Lange
- "Every person in this room can get better" -- Dr. Nancy Klimas
- "Don't drive in rush hour traffic!" -- Dr. Gudrun Lange
Please click through the Facebook photo album for more highlights from today.
Good night from Reno!
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