May 12Th International Awareness Day- Me/cfs, Fibro

[Chaos]

May 12th has been designated as International Awareness Day for ME/CFS, Lyme and Fibromyalgia. There is a facebook link here

https://www.facebook.com/may12th.awareness

for anyone who wishes to participate by "lighting up the night" with colored light bulbs, ribbons, trying to get articles in local papers, on air or in any other way trying to help raise awareness of these devastating diseases.

May 12 has been chosen as it was Florence Nightengale's birthday and it is believed that she suffered from ME/CFS after she returned from nursing in the Crimean War in the 1800s.

It is estimated that 70% of ME/CFS patients have POTS/NMH/OI so there is a huge overlap in patient populations here.

ME/CFS and Fibromyalgia are also very frequently seen to occur in the same patient.

There is extremely poor funding for research for these diseases currently. This year only $3 Million is budgeted in the US compared to $18 Million for male pattern baldness. On the other hand, it costs the US economy Billions in medical and disability costs according to Elizabeth Unger of the CDC. Nancy Klimas MD (a well known AIDS and ME/CFS researcher) stated that if she had to chose between the two, she'd rather have AIDS than ME/CFS. That's how bad the situation is for those of us with this disease.

Unless patients, their families and friends start making some serious noise, we are going to continue being at the very bottom of the barrel when it comes to getting research money. There are good studies being done now, but much more needs to be done and without funding, it's going nowhere.....and neither are we.

Edited April 12, 2014 by Chaos