http://cfsknowledgecenter.com/expert-assistance.php
This is nowhere near a transcription, but does have a few of the key points I caught, and, if you’re lucky, the slides. I apologize for any errors.
To me - this video is the best thing since the original science paper
XMRV Update
1:36 The NIH 2 weeks ago released true positive and negative samples that all can use
The science not established yet, but on its way.
In December, she sent 3 sets of the same GWI and ME/CFS samples to 3 different labs. 2 labs had different results for both, and the 3rd the same for GWI and different for ME/CFS
4:02 Only the first xmrv paper did all 4 types of testing
She’s setting up to look for it all 4 ways + look for active and latent virus
5:48 Pharma is interested, involved and sniffing around all the big labs looking for partnerships. The in vitro tests have been done. They now know which drugs will be good trial drugs. Expect clinical trials next 5-6 months
6:25 xmrv has energized the field. Applications and funding for grants are both up.
Rapid-response research is necessary as grant process takes minimum 1 – 1 years.
Grassroots funding has developed to make this happen.
Clinical Approaches
8:16 ME/CFS is interactive. The compromised immune system leads to problems with the autonomic systems and the neuroendocrine system. And they all affect each other. Are looking at that.
One of her studies did mild exercise + measure relapse at 3 points in time. For GWI they had better funding so could measure 8 points. Are getting funding to do the same for ME/CFS next month.
Advances
11:06 60% of people with ME/CFS get sleep apnea. Some from ME/CFS weight gain; some not
13:10 some supplements modestly helpful, well tolerated. She feels worth doing as any little bit more energy/lessen symptoms helps
She uses ubiquinol (active coQ10) with everyone
16:10 Linda Watkins doing neat work on pain (FM overlay side). Poor sleep and pain lead to more of the other. Looking at norepenephrin > neuron > 2 IL1s 9white blood cells beside it also signal pain. Opens doors to new treatments in brain inflammation. Doing cool animal work. Already done Phase 1 & 2 trials.
Normally with stress, cortisol kicks in. For us, it shuts off.
Most of us have about 1 litre of blood missing (+explains how tests normally do ratios so can miss this)
26:00 to volunteer for research
Zbarnes@med.miami.edu