The U.S. National Institutes of Health (NIH) has posted the agenda for its two-day State of the Knowledge Workshop on ME/CFS Research taking place on Thursday and Friday this week (April 7-8). It's two days chock-full of presentations by the top ME/CFS researchers - should be a great overview of the latest findings.
The entire two-day conference will be broadcast live via the web - click on the link at this page to access the webcast on the days of the conference. I will certainly tune in for some of it - should be enlightening!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
I was really excited to see the names on the list like Dr. Kamaroff, Dr. Mary Schweitzer, and others.
ReplyDeleteI was also very pleased with how many organizations are already using ME/CFS.
I am really feeling anticipation to the outcome of this meeting.
The conference agenda is definitely a Who's Who of CFS research and treatment, Dominique! It's a great line-up. Looks like a very full schedule.
ReplyDeleteSue
Hey Sue,
ReplyDeleteThanks for this info, I'm really excited about tuning in. I've been reading your blog for a while now, and I really appreciate how it's both a positive and optimistic (and realistic) account of your life, and also a source for all kinds of ME/CFS activism, advocacy, and information. All the negativity on the Internet about CFS is overwhelming, and as a person who is just starting to get into the online patient community and trying to stay positive, your blog is inspiring. Keep it up!
Take care,
Lee
www.wecanstillblog.blogspot.com (which I'd be honored if you checked out, of course.)
Thanks so much for the kind words, Lee. We try hard to stay positive and optimistic!
ReplyDeleteI know just what you mean. When I was first diagnosed, I was excited to find others with CFS on the web, but some of my first interactions - with people angrily ranting about politics - really scared me off!
The way I look at it, anger and other negative emotions just make me feel sicker. I'd rather put my limited energy into finding joy in our own lives and helping others when I can. The move into activism has been gradual, as I've learned more and gotten to know more people.
Welcome! Though I'm sorry this is a community you have to be a part of. You can find a lot of support and encouragement and even friendship in the online CFS community.
Sue