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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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CFSAC Meeting Live Online Today and Tomorrow! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Just a reminder that the latest CFS Advisory Committee meeting is taking place today and tomorrow in Washington, DC. The meeting just started at noon today and will continue ... Read on »
CFSAC Meeting May 11 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Sorry for the delay in telling you abut the CFSAC meeting - Blogger has been down, in "read-only" mode for two days!  Very frustrating. So, yes, we did go to Washingt ... Read on »
CFSAC Meeting Online by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome The U.S. Department of Health and Human Services is hosting another Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting this week, Tuesday through Thursday, in Washi ... Read on »
CFSAC Meeting Scheduled for June 13 - 14 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome The US Department of Health and Human Services has announced dates for the "spring" meeting.  The details are reprinted below.  They are not yet accepting requests for pub ... Read on »
CFSAC Meeting Today in Washington, DC by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Happy (belated) Mother's Day to all you moms out there!  No Movie Monday today because we spent the weekend in Connecticut at my mom's house with my sister and her famil ... Read on »
CFSAC Proposes Name Change! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Sorry for not posting much this week.  I know you're all eager to hear more about the CFSAC meeting.  I've just been incredibly busy taking care of the kids and the house on ... Read on »
CFSAC Testimony and Looking for Parents of Kids with CFS by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Just a quick note. Here is a link to ALL of the testimony from the CFSAC meeting on Monday, both those were present and spoke at the meeting, as well as those like me who ... Read on »
CFSAC Testimony from A Teen with ME/CFS by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Another clip from the public comment period on Wednesday, May 11.   And very articulate and moving testimony from 15-year old Sophie Read on »
CFSAC Testimony From Two Mothers by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome OK, you better get the box of Kleenex out for this one.  Here are two more videos of testimony from last week's CFSAC meeting in Washington, DC.  Both of them are mothers, t ... Read on »
Changes in Lyme Treatment by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Once again, I'm sorry for the long silence.  Last week was another very tough one - Jamie missed another four days of school - and I had a mini breakdown Friday evening when ... Read on »
Christian Weight Loss Book by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I had all kinds of plans to write a thoughtful, in-depth post on a serious topic today (based on middle-of-the-night musings)....but I'm out of time and energy, and it's Fri ... Read on »
Christmas Joys by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I hope everyone had a wonderful Christmas! We enjoyed a nice Christmas at home.  Jamie and I weren't feeling good for some of it, but that's the nice thing about our quie ... Read on »
Chronic Fatigue Syndrome on the SAT! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Jamie took the SAT (college board test) today for the first time.  You won't believe what he saw in the Vocabulary section...a sentence about CFS!! He said it was somethi ... Read on »
Claim Your Illness Experience, Don't Let It Claim You by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I like to start my morning by listening to a TED talk while I eat breakfast - something funny or enlightening or inspirational. This morning, I cam across a talk by a cancer ... Read on »
Coming Back to Life by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome As you can see from this photo, many of the trees here are still mostly bare, but this one tree in our neighborhood is in full bloom, a sign that things are coming back to ... Read on »
Comprehensive ME/CFS Research Initiative at Stanford by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Cort Johnson has done it again - written a fascinating, complete overview on his blog of a critical initiative going on in the ME/CFS world. You can read the full article he ... Read on »
Contribute to ME/CFS Research While Shopping! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome With the holiday shopping season fast approaching, remember you can contribute to ME/CFS research WHILE doing your online shopping! Since getting sick almost 13 years ago ... Read on »
Corrections: XMRV Presentation by Dr. Mikovitz by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome It has been brought to my attention that I incorrectly implied in my conference notes yesterday that Dr. Mikovitz "discovered" XMRV.  She was not, in fact, the first researc ... Read on »
Craig has a 504 Plan!! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Sorry I haven't posted much this week.  Ken was out of town for most of it, so I've been on double-duty, including the early shift, getting up at 6 am each morning, with hec ... Read on »
Crash! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Whew, it's been a long dry spell for my blog. I've been sick for the past week and a half. I guess I picked up whatever my oldest son had Halloween week. I wa ... Read on »