Discussion in 'General ME/CFS News' started by Sasha, Feb 17, 2018.
3am on Wednesday UK time, apparently - what's that, 7pm on Tuesday Pacific Time or something?
Good panel (details from Eventbrite, here), and good to see that @dave30th will be the moderator.
Lily Chu MD, MSHS has a background in internal medicine, geriatric medicine, and health services research. She is currently co-vice-president for the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. She is interested in all aspects of ME/CFS ranging from pathophysiology, diagnosis, and treatment to epidemiology, healthcare provider education, and access to quality medical care.
Ronald Davis, PhD is a world leader in the development of biotechnology, especially the development of recombinant DNA and genomic methodologies and their application to biological systems. He directs the Stanford Genome Technology Center, where he and his research team develop new technologies for the genetic, genomic, and molecular analysis of model organisms and humans with a focus on clinical medicine, diagnostics, and biosensors. After his son became severely ill with ME/CFS in 2011, he shifted his research focus: he also directs Stanford’s Chronic Fatigue Syndrome Research Center where his team applies an array of technologies to improve the understanding, diagnosis, and treatment of this debilitating disease.
José G. Montoya MD, FACP, FIDSA is originally from Cali, Colombia and completed his medical degree with honors at the Universidad del Valle. For the past 13 years, his research endeavors have included building a multidisciplinary team at Stanford University focused on elucidating the central pathogenesis of CFS. He has been able to centralize efforts of several Stanford and nationwide investigators in an attempt to understand the role of infection and the immune system in CFS. He is also the founder of the Immunocompromised Host Service (Infectious Diseases) at Stanford University Medical Center.
Allison Ramiller is a Master of Public Health candidate through the Online MPH program at UC Berkeley. She has always been passionate about working for the public interest and advancing public health, particularly for disenfranchised populations. Prior to joining SMCI, a leading organization focused on ME/CFS community engagement in research and treatment, she served as special assistant in the Washington office of the Brennan Center for Justice. Allison has a bachelor’s degree in psychology with minors in neuroscience and sociology from the University of California, Davis.
David Tuller MPH ’06, DrPH ’13 is a senior fellow in public health and journalism at the Center for Global Public Health at the School of Public Health. He was a reporter and editor for 10 years at the San Francisco Chronicle, and his work has appeared in The New York Times, The Washington Post, Health Affairs, and many other publications. Over the last two years, he has reported extensively on ME/CFS in his investigative series, “Trial By Error”, for the well-regarded science site, Virology Blog.
This is hosted by the UC Berkeley School of Public Helath and co-sponsored by the International Association for CFS/ME, Open Medicine Foundation, Stanford ME/CFS Initiative, Solve ME/CFS Initiative, and Workwell Foundation. Registration is recommended to attend.
Tuesday at 10(am) PST?
The livestream panel discussion starts at 7 PM PST on Tuesday.
Bumping this thread ... not sure if I'll watch but some might be interested.
Thanks to @MErmaid for including the information in the previous post.
Bump. It's starting.
Thanks for the reminder because i had forgotten about it
Currently someone asking a pro-homeopathy question... how will they respond?!
Montoya talks about the benefits of double-blind trial.
Chu talks a bit about how to design trial. Then they move on.
No-one pointed out homeopathy is nonsense! I wish they had tbh.
I also wish they had but i think they want to be as friendly as possible.
I want them to go savage!
I do too, i'd like to see them say don't waste resources, money and time chasing stupid quack treatments. They probably want to say something stronger but fear alienating believers.
I liked how Tuller mentioned how activism as theatre was an AIDS pandemic tactic.
I'm all in for making a big scene to get media and shame politicians. We'll get no where without big provocative in your face advocacy (to go along with the inside strategy). It is theatre, it is performance, just like the politicians do.
Interesting that Dr. Montoya said when he started at Stanford, medical staff received a letter telling them not to see ME/CFS patients. This sort of marginalization is what psychologists should be studying when it comes to this disease, not hypothetical false illness beliefs...but the actual impact of being stigmatized and medically neglected while being in extreme health distress.
I agree though i don't see it as theater/performance (beyond the world is a stage as the Bard wrote), i see it as politics is run by propaganda to make lies palatable and the gullible falling for it. That said your correct, we need a high profile and determination to not take no for an answer.
Random mixed bag of questions pity the audience didn’t ask much about the research these guys are currently working on rather than what do you think about a thing I’ve been hearing about It was interesting to hear that both Lyme and toxic mould are being looked at/potentially being looked at but I’m sure there were more interesting things they could have been talking about eg Montoyas work on brain abnormalities.
I agree. It was frustrating to have time taken up with a homeopathy and EMF question. Montoya is doing follow up research based on Japanese studies. The just published studies, but I haven't seen them translated from Japanese. In another talk, Montoya said that they have an improved tracer that they can inject to see if there is inflammation happening in glial cells...would have loved to learn more about this.
I suspect this is also part of being polite, they want to find the disease mechanism and how to treat it. How it starts is important but...
I am curious if tests patients have had done elsewhere would be illuminating at all, they mentioned a specific brain area, i wish they had said what it was because i've had an MRI and constast spect scan, i would love to know what to look at.
The right arcuate fasciculus and the right inferior longitudinal fasciculus.
ETA: I got left and right mixed up.
Sometimes it's best to...
Separate names with a comma.