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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Completed CDC Study Documents... WHEW!!!!

Jacque

Senior Member
Messages
424
Location
USA - California
Well... I have a total of 6 1/2 hours invested in completing all the symptom forms for the CDC. Dr. Kogelnik has finally captured their attention, and they are now researching ME/CFS! FINALLY!!

After completing this mentally grueling task - I sit here "stunned" feeling. It was as if I had to put on the Wide Angle lens and look at my life from age 12 on. I am so used to having the ZOOM on and trying not to remember or focus on what this illness has ROBBED from me...and just deal with my symptoms from hour to hour...day to day, and find happiness in even the smallest of things.

The forms covered everything from Bowels, Depression, Sleep, Pain, Surgeries, Infections, and on!! After filling it all out I wonder how I even manage to put a smile on my face, or how I have survived 35 years with this BEAST gaining more territory each year...

HOPE is a very powerful thing!!! When life screams - JUST GIVE UP and GIVE IN... HOPE whispers in my ear and says "JUST TRY ONE MORE THING"!!

Puttin my ZOOM lens back on now.... maybe that will get me in a better mood and not so teary....
Love to all....
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Jacque, I hope the information will be helpful to future study, if so then the personal drain might be worth it. I understand what you mean by stunned, I think most of us do. I also agree about hope. Hope is what keeps many of us going I think. Hope is one thing we cannot live without. Best wishes, Alex