October 2020

Welcome to our #MEAction Colorado newsletter.  We hope you find some valuable information in these newsletters.  If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 

Sincerely,

Lara Heisler, Editor   heisler.lara@gmail.com
Jim Lutey, Editor       jimlutey@gmail.com 
 


Sue's Story, a Member of MEAction Colorado   

I was an airline Captain for a major carrier when in the fall of 2007 I fell ill with what would later be diagnosed as ME.  After seeing numerous doctors, I wound up seeing an infectious disease doctor at the University of Miami who diagnosed me with post viral fatigue.  He recommended I see Dr. Nancy Klimas also at the U of Miami who specialized in Chronic Fatigue Syndrome as it was then called.  Eventually I was able to get in to see her and she diagnosed me with Chronic Fatigue Syndrome.

I went on sick leave with my employer and when that ran out, applied for Long term disability (LTD) which was approved with me only missing one month of pay.  I have been on LTD since and do not expect to be able to fly again.  This was extremely difficult for me as this was my chosen profession and I loved flying.  I ended up getting counseling for about a year and a half to help me adjust to not being able to fly and being chronically ill.

I follow a regimen from Dr. Klimas that includes some prescription medications and quite a few supplements. For the non-restorative sleep that is a part of this illness, I take Xyrem in an off-label use.  The neurologist (sleep specialist) I see in Miami, worked with Dr. Klimas as a resident and is very familiar with ME and prescribes it for me.  I also have used Ashock Gupta's Amygdala retraining technique with good success and at one point thought I might be able to return to work.  As I prepared to send my paperwork into the FAA to see if I could get my medical back, I had a CFS crash, followed by another, and another etc.  You folks know the drill!

My symptoms are orthostatic intolerance, brittle nails, hair falling out and primarily PEM.  PEM symptoms include achiness, feeling like I have a fever, brain fog, ringing in my ears and overwhelming, I can't move anymore at all, type of fatigue.  For awhile I could not tolerate alcohol and frequent headaches are also a symptom.   I do feel better here in Colorado, the cooler, dry weather is much better for me, but I'm careful to not over do anything in the heat of summer.  Although I do feel pretty well most of the time now, I monitor my activity levels, rest more than a well person and try to keep a handle on my stress level with meditation.  I was never bed bound but have spent plenty of time on the floor with my feet up on a chair, resting until I felt good enough to get up and be vertical again.

I have found one other thing that helps me that I am not willing to put in the newsletter.  But if anyone wants to know about that, perhaps they can contact me through the folks that provide this newsletter.
Wishing you all felt well.

~ Sue Cunningham

 
Post COVID-19 Care
 
In the above article by Sue Cunningham, Sue talked about her consultations with Nancy Klimas, M.D. in diagnosing and treating her ME.  HERE is a great video of Dr. Klimas on Post COVID-19 Care.
 
Nancy Klimas, M.D. has more than 30 years of professional experience and has achieved international recognition for her research and clinical efforts in multi-symptom disorders, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Gulf War illness (GWI), fibromyalgia and other neuro-immune disorders.  She is immediate past president of the International Association for CFS and ME (IACFS/ME), a professional organization of clinicians and investigators, and is also a member of the VA Research Advisory Committee for GWI, the NIH P2P CFS Committee, and the Institute of Medicine ME/CFS Review Panel.  Dr. Klimas has advised three Secretaries of Health and Human Services, including Kathleen Sabelius, during her repeated service on the Health and Human Services CFS advisory committee.  Dr. Klimas has been featured on Good Morning America, in USA Today and the New York Times. 

 
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Disclaimer:  
 
Newsletter volunteers are NOT medical professionals; we are patients, allies and caregivers sharing our own experiences. What you do with the information offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. The opinions expressed in this newsletter are those of the submitter and not of the newsletter volunteers or MEAction.