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Sue J.
Health Maven
for the
Chronic Fatigue Syndrome Community
Top HealthBlogger
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Chronic Fatigue Syndrome Community
Wilmington, Delaware
Blog:
http://www.livewithcfs.blogspot.com/
I have had Chronic Fatigue Syndrome (CFS) since March 2002. Both of my sons, ages 10 and 14, have...
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Post-Mother's Day Crashette
by
Sue J.
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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 ...
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International ME/CFS Awareness Day 2013
by
Sue J.
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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 ...
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The Thrill of Victory and the Agony of Defeat
by
Sue J.
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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 ...
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Videos from FDA ME/CFS Workshop Posted
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Sue J.
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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 ...
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Movie Monday 5/6
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Sue J.
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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 ...
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Movie Tuesday 4/30
by
Sue J.
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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 ...
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Must-See Webcast!
by
Sue J.
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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 ...
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Watch FDA's ME/CFS Workshop Live Webcast
by
Sue J.
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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. ...
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Movie Monday 4/22
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Sue J.
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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 ...
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How My Son Went From Couchbound to College
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Sue J.
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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 ...
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Movie Monday 4/15
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Sue J.
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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 ...
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ME/CFS Charity Volleyball Fundraiser
by
Sue J.
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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 ...
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Movie Monday 4/8 (on Tuesday)
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Sue J.
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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 ...
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Last Day to Register for Attending OR VIEWING FDA Meeting
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Sue J.
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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 ...
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Two Ways to Help ME/CFS Treatment Move Forward
by
Sue J.
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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 ...
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Post-Event Crash
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Sue J.
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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 ...
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Movie Monday 3/18
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Sue J.
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We had a long and tiring weekend. My dad and his wife were visiting, and we spent all day Saturday at my uncle's funeral nearby. Visiting hours in the morning, church servic ...
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Exciting New ME/CFS Research Looks At Infections
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Sue J.
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I am way behind in reading up on recent ME/CFS research, just like I am behind in everything else these days! So, this update was posted on Phoenix Rising back in February, ...
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Movie Monday 3/11
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Sue J.
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Craig finally went back to school on Friday!! Hurray! Even better, he didn't crash afterward, worked on make-up work all weekend, and went to school today, too! He seems ba ...
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Movie Monday 3/4
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Sue J.
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Yet another long week of being mostly housebound with my son, but we are finally seeing signs of improvement. He did perk up a bit, starting on Friday, and had a decent week ...
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