Health knowledge made personal

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
› Share page:

Posts

Sort by: Most recent | Name
Update on Our Gluten-Free/Dairy-Free Diet by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome This post is long overdue, but things have been very busy around here.  Way back in July, I wrote that my son, Jamie, and I would be trying a gluten-free/dairy-free diet on ... Read on »
Movie Monday 11/12 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Ah, sorry for the long stretch of silence last week!  I drove to Connecticut and spent the week taking care of my mom who had hip surgery recently.  It was tiring, as ... Read on »
Movie Monday 11/4 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I thought we'd spend our time inside during Hurricane Sandy, watching movies with the kids and reading aloud once the power went out.  Ha!  We never lost power - which was v ... Read on »
The Joys of Support by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome We got together again last night with our local group of families affected by ME/CFS (you can read about how our group got started here ).  This is mostly families who have ... Read on »
Still Here! All is Well... by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Sorry for not posting in a while.  Hurricane Sandy kept us busy for a few days, then Halloween, and life is just now returning to normal. We were very lucky with the stor ... Read on »
Getting Nowhere by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I am feeling overwhelmed today about how much I need to do that isn't getting done.  This is pretty much a constant source of frustration for me, but some days are worse tha ... Read on »
In-Office Testing for Orthostatic Intolerance by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome (NOTE:  If you don't know what Orthostatic Intolerance (OI) is or you have CFS but think you don't have OI, then please read this introductory OI post first.  Briefly, OI ... Read on »
Movie Monday 10/22 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome A major sick week here at our house last week.  Jamie, 18, was home from college for 4 days - a cold triggered a bad crash - and now all 4 of us have caught the virus!  So, ... Read on »
Talking to School Personnel About ME/CFS by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome My son, Jamie, was home from college this week with his first bad crash of the school year.  Fortunately, he started to feel bad on the weekend, so he ended up missing only ... Read on »
Movie Monday 10/15 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Still struggling a bit here.  Craig finally went back to school today, three weeks after his knee surgery!  I know I said the same thing last Monday, but that was short-live ... Read on »
Fall 2012 CFSAC Videos, Day 2 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome So, scroll down to see the video clips form Day 1 of the recent CFSAC meeting in Washington, DC.  And here are the clips from Day 2 Day 2 Opening Remarks and Agency Updates ... Read on »
Video Clips of CFSAC Meeting, Day 1 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Last week (was it only just last week?), I attended the Fall 2012 CFS Advisory Committee Meeting at the Department of Health and Human Services.  I was only able to be there ... Read on »
The Daily Battle by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I was thinking (again) today about how every single thing I do every single day is such a struggle and requires such a huge effort of will.  No one else - not even the peopl ... Read on »
Movie Monday 10/8 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Well, we had another loooong week with Craig stuck at home, trying to recover from his knee surgery.  He finally returned to school today - woohoo!!  Not sure if he will mak ... Read on »
Today's the Day I'm Not Doing Anything by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Don't you just love Bruno Mars' The Lazy Song?  It could be an anthem for ME/CFS (without "lazy" in the name of course), and it perfectly describes how I am feeling today ... 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 »
Movie Monday 10/1 by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Still struggling here.  I am feeling better, but our son is still in bad shape from his knee surgery last week .  He felt better on Saturday - enough to manage without the p ... Read on »
Respected and Beloved CFS Advocate Dies by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I have written here before about Dr. Rich Van Konynenburg's Simplified Methylation Protocol .  This tireless researcher devoted years of his life to taking a complex treatme ... Read on »
One Day At a Time by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome Once again, sorry for being absent so much lately.  It has been a difficult week, and I have had no time or energy for blogging (so, also sorry I haven't been visiting blogs ... Read on »
Mourning Losses by Sue J. Patient ExpertHealth Maven Posted in: Blog Posts in Chronic Fatigue Syndrome I have had ME/CFS for ten years now.  You would think that I would be past all the disappointments and be done mourning the life I once had, that I would have adjusted by no ... Read on »