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Sue J. Patient Expert

Wilmington, Delaware
I have had Chronic Fatigue Syndrome (CFS) since March 2002. Both of my sons, ages 10 and 14, have... Full Bio
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Movie Monday 6/3 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Another week gone by without much blog posting - so sorry for that! Things were crazy busy here last week. My oldest son came home from college (victorious after a great fre ... Read on »
Movie Monday 5/27 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Happy Memorial Day to everyone in the U.S.! I've been thinking a lot today about my grandfather, my uncle, and my great-uncles, who all served in the military at various tim ... Read on »
Watch CFSAC Live Today by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Better late than never....crazy week here. Yesterday and today is the Spring 2013 meeting of the CFS Advisory Committee to the Department of Health and Human Services in ... Read on »
Movie Monday 5/20 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Busy, stressful week last week for me, but it improved toward the end. I went out with four of my closest friends for dinner Thursday and came home feeling relaxed and happy ... Read on »
Post-Mother's Day Crashette by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome This is my new favorite word: crashette. A friend and I were e-mailing about lunch plans for tomorrow, and I warned her I wasn't feeling well today so would have to see how ... Read on »
International ME/CFS Awareness Day 2013 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I realize I am a day late, but I was away all weekend visiting my mom for Mother's Day and her birthday (I hate how Awareness Day always falls near Mother's Day weekend!). I ... Read on »
The Thrill of Victory and the Agony of Defeat by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Even after 11 years of living with ME/CFS, the emotional highs and lows that go along with the unpredictable physical symptoms still take me by surprise. I know intellectual ... Read on »
Videos from FDA ME/CFS Workshop Posted by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome The FDA was very quick to post videos from their recent workshop on Development of Safe and Effective Drug Therapies for CFS and ME (I was a little slow, but they were quick ... Read on »
Movie Monday 5/6 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Ahhh...a quiet and peaceful Monday. I needed that. My 15-year old son, Craig, was home sick all last week with a sinus infection that made his CFS flare-up, so it was a trea ... Read on »
Movie Tuesday 4/30 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Ah, yes, running behind as usual! We had a lovely weekend camping - very relaxing - but re-entry has been tough. More on that later. For now, I thought I'd tell you about th ... Read on »
Must-See Webcast! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I managed to catch a couple of hours of the FDA Workshop for ME/CFS this afternoon after my nap. Wow. This is truly an amazing thing happening - between the patient panel ... Read on »
Watch FDA's ME/CFS Workshop Live Webcast by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome The landmark FDA Workshop on Drug Development for ME/CFS starts Thursday afternoon and runs through Friday. This is a BIG DEAL for everyone with ME/CFS, all over the world. ... Read on »
Movie Monday 4/22 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Happy Earth Day! Whew - long and tiring week last week! My husband was out of town all week, so I was on my own. Plus, my mom came to visit, and she and I went to one of ... Read on »
How My Son Went From Couchbound to College by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I guess that post title is a bit misleading because the honest truth is that we really don't know exactly what caused such a miraculous improvement in our son that allowed h ... Read on »
Movie Monday 4/15 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Another busy week here but kind of a strange weekend. My husband went to visit his father in Oklahoma, so we missed having him around this weekend (and missed being able to ... Read on »
ME/CFS Charity Volleyball Fundraiser by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Want an opportunity to help ME/CFS research from your couch or bed? This lovely young woman from George Washington University whose aunt has CFS has set up a charity voll ... Read on »
Movie Monday 4/8 (on Tuesday) by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I really tried to get to this post yesterday, but severe allergies have me down this week. We went from snow 2 weeks ago and temperatures in the 20's one morning last week t ... Read on »
Last Day to Register for Attending OR VIEWING FDA Meeting by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Oops - I almost missed this. If you want to watch the webcast of the upcoming FDA meeting from home, you need to register online by midnight TONIGHT! Use this link to reg ... Read on »
Two Ways to Help ME/CFS Treatment Move Forward by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome On April 25-26, the U.S. Food & Drug Administration (FDA) will be holding its first-ever FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Ench ... Read on »
Post-Event Crash by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome As most of you know, I have generally been better in recent years, thanks mainly to beta blockers and Imunovir . I have more good days and fewer bad days. I can take walks a ... Read on »