Ok.....so I am a bit in awe.....
Thank you JaimeS for all this work.....
ZIKA Virus, HIV, Ebola, are all serious life threatening diseases......they in a matter of years and some in months recieved $Billions in research.
I really dont know what to say the disease burden is at least 17 to 22 milliom worldwide.
It involves Neurology, Immunology and every other facit of the human body.....
They figure roughly on average that this 1,625,000 million people have this disease. In the US.
25% of those house bound or bedridden which 406,000 Americans stuck inside.
I am just speechless about this request for:
$10million yr 1
$20million yr 2
$25million yr 3
I personally believe this grossly miscalculated considering your amount of beddridden, housebound dieing ME patients is equal too or more than MS that produces the same amount of studies per year than ME has in its entire existence....
Thats right MS considered very serious though still is said to have higher QOL Scores than ME releases 5,000 papers per year!!!!!
A great point was made Davis and lipkin both need 5 mill this year.....
What about Simaron Research, Jarred Younger, Bateman and Horne Center, and others.....
The 10 mill is gone immediately.....with others having to raise money....
I know this is how things work....
Was the $ Figure not taken into account that The NIH sends funds worldwide for research?
MEAction I dont understand? Please explain it to me???????
Good, intelligent, experinced, researchers are drawn to study illness that are funded did we forget Male Pattern Baldness gets more money then we do.....yet:
- Over 400,000 in the US cant leave their homes
- These 400,000 have been linked to more comorbidities then I can count
- What about the other 1,200,000 with varying levels of disability
- More cant work, the economic burden is huge
- There has been years of neglect
- Families ruined...lives ruined
Im sorry but I feel this disease like many others do in a severe way an knowing how many sit inside all day or are confined to beds common....
I am upset, shocked, and not happy
If I am missing something please fill as I am open to things that I may not fully understand me in cause I am reasonable person but was a negotiator/businessman and this seems sideways...