Dr. Jamie Deckoff-Jones is starting an informal study of ME/CFS and related illnesses in families. She works for WPI and writes a blog about her and her daughter's experiences with CFS. They are both XMRV positive and have been trying anti-retrovirals. Her blog is very interesting and always enlightening, but be forewarned: there is often a lot of mud-slinging among the commenters.
Whether you have family members who are ill or not, please take a moment to visit her blog and answer the survey questions (via e-mail and confidential). Obviously, possible transmission of CFS among family members is a subject of great importance to my family. This is long overdue, and anything that helps to shed some light on the mechanisms of ME/CFS is a good thing.
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.
Wow! Sue! So this blog you recommended is where the action is. What a firestorm. My current doctor (Dr E) is even commenting on a lively discussion about Ampligen. Yeah, I'm sitting that one out too; too rich for my blood (pun intended!) Boy, have I been missing out. Too much to read; makes my head spin. Thanks for sharing ; ) Be well(ish)…Martine
ReplyDeleteHa ha - excellent pun, Martine!
ReplyDeleteYes, I sometimes read the blog but try not to get too involved on the commenting. I just don't have the emotional energy for all that anger and ranting.
I'm happy to stay in my quiet little corner of the blogiverse.
Sue
I loved the idea of the informal study and did it right away.
ReplyDeleteAnd I agree with you about her blog. She is a wealth of information and shares with us so freely.
As for the mudslinging...I duck and depart! :-)
I finally had time and energy to do the survey today. I got a nice email from Dr. Deckoff-Jones thanking me for participating.
ReplyDeleteJust catching up on your posts. Nice job summarizing the CFS conference. I hope to watch some of the video this weekend.