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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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CFS Column in Huffington Post by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome A friend (Thanks, Martine!) sent me a link to a new column in the Huffington Post written by a columnist "coming out of the closet"with his ME/CFS.  It's an excellent column ... Read on »
CFS Doctors by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome A quick request - Anyone out there know of a doctor in Minnesota who understands CFS? Even better if the doctor has experience in pediatric CFS and Orthostatic Intoleran ... Read on »
CFS Genetic Study by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome My older son, Jamie, and I are participating in a new research study that aims to identify some of the genetic markers associated with CFS. This is exciting stuff! It's a la ... Read on »
CFS Grief by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome It's been a long time since I've cried over CFS (yes, it does get better over time), but I cried this morning.  Not about myself but my son.  There is no worse experience in ... Read on »
CFS in Redbook by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Hey, guess what? Our family is featured in an article in the July issue of Redbook about happy families (page 174)! Isn't that cool? I responded to a request from the a ... Read on »
CFS In the Local News! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Last night, I was flipping through our little town weekly newspaper. I got to the editorial page and was surprised to see the headline"CFS Misunderstood, Debili ... Read on »
CFS In the Local News! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Last night, I was flipping through our little town weekly newspaper. I got to the editorial page and was surprised to see the headline"CFS Misunderstood, Debilitating Disease ... Read on »
CFS In The News by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome While it's good to see CFS showing up more often in the mainstream media, it's also disheartening to see silly-sounding, over-simplified reports of miracle cures, l ... Read on »
CFS In the News Again! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Saw a couple of interesting articles on CFS in the mainstream news this week - a good sign that word is beginning to spread to the public and the broad medical community tha ... Read on »
CFS Moms Lunch by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Our little local group of moms whose kids have CFS, OI, and/or Lyme got together for lunch again yesterday!  It was lots of fun again and great to talk to everyone.  We all ... Read on »
CFS Webinar on Orthostatic Intolerance by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Busy, busy week - sorry I haven't had much time for blogging!  The good news is that I'm busy because I've been feeling pretty good AND I have a new writing assignment.  The ... Read on »
CFS-Retrovirus Link Confirmed! by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I'm sure by now most of you have heard the big news...the FDA/NIH study confirming the presence of a retrovirus in CFS patients has finally been published!! Although the ... Read on »
CFS/FM Treatment Webinar Thursday by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome The CFIDS Association is sponsoring another webinar this Thursday Treating CFS and FM: The Stepwise Approach by Dr. Charles Lapp Thursday, May 20 12:30 - 1:45 pm Eastern ... Read on »
CFSAC Meeting - My Testimony by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome The U.S. Department of Health and Human Services' CFS Advisory Committee (CFSAC) will be meeting tomorrow and the next day, October 3-4, 2012, in Washington, DC. I will b ... Read on »
CFSAC Meeting June 16-17 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome The 2014 Spring Meeting of the CFS Advisory Committee (CFSAC) will be held on Monday, June 16, 2014, from 12:00 p.m. until 5:00 p.m. (ET) and Tuesday, June 17, 2014 from 9 ... Read on »
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 »