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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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Nothing against Lupus!

jimbob

jimbob

ME/CFS84-XMRV+
Messages
321
Location
myrtle beach, s.c.
Two nights ago local news had coverage of a fundraising event in our city. It was for Lupus and there were hundreds of people walking. At the end of the piece they announced they had raised $20,000.00! I thought would'nt that be nice if I could do that for me/cfs, but then reality set in when I realized that 99% of the population doesn't have a clue what cfs/me is! It's a crying shame, that after all these years, we are still hidden in the shadows!
 
Frickly

Frickly

Senior Member
Messages
1,049
Location
Texas
I feel the same way when ever there is an MS bike or walkathon. My symptoms are almost identical to MS but there are no walkathons for us. we are invisible and it took alot of work by many people to make sure we stay invisible.
 
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