Doctor visits and the medication (or lack thereof) are the tip of the iceberg.
Again, how did any disease get eradicated without research and support? This is an epidemic disease way more than anyone realizes. Again, just watch Unrest. God bless this woman Jennifer Brea for making this. No amount of medication or treatment or experiment on oneself is of lasting consequence with ME/CFS. My wife's and my life have been drowned by it -- but we have to think big picture.
If it is any help, Solve ME/CFS Initiative has a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.
Finally, read this story. Warning: it is depressing. But the only way this illness sees light is to show everyone what it can lead to ... some of which is absolute darkness, but sometimes greatness in the form of the saints in your life. http://lobel.nu/anne.html
For ME/CFS to end, 1) people have to learn about it and 2) people with power have to be forced to address it. Just like everything else we are struggling with in this day and age.
Respectfully yours and grateful for anyone taking 20 seconds to even read about ME/CFS,
Classy move by ScruffyTheJanitor in posting this. A couple of Michigan alumns I know sent me Ace's story today and it hits home, as my wife has been dealing with ME/CFS for years. IT SUCKS. You almost would rather have something else.
It's important people learn about ME/CFS -- it has been appallingly ignored, dismissed, ridiculed and under-funded for research. But thanks to the film UNREST, we are at a critical point in history where this illness is turning the corner in public awareness and acceptance. We need for this also to happen in the medical community and with our government and insurance industries. Imagine the financial toll on top of the physical and emotional devastations an illness like this can have.
So, two things for now:
1) Watch UNREST (free on PBS site through 1/23) and see firsthand what Ace and his dad and scores of people deal with while learning about ME/CFS: http://www.pbs.org/independentlens/videos/unrest/
2) Scruffy posted the perfect org to donate to, since Solve ME/CFS is pretty much one of the only organizations devoted to pushing for an ME/CFS cure on top of education and -- most importantly -- RESEARCH FUNDING. The US spends more money on hay fever research than something like this. So to directly donate, go to https://donate.solvecfs.org/
(Shameless plug: did a small campaign for that same Solve CFS/ME Initiative in honor of my wife if anyone would like to help me meet my goal, which is 3/4 done. https://www.crowdrise.com/o/en/campaign/putmecfstobed)
Or go to Crowdrise and connect a new campaign in honor of Ace like I just did for my wife. That would probably be appropo for this Wolverines community.
Ace if you are reading this, don't give up ever and let the people around you love and help you to no end.
Recent Comments
Great piece, man.
If Solve ME/CFS is acknowledging your campaign, both you and the Money Cannon are to be commended.
Godspeed in Alabama! Stay in touch.
Yes, Ace is right.
Doctor visits and the medication (or lack thereof) are the tip of the iceberg.
Again, how did any disease get eradicated without research and support? This is an epidemic disease way more than anyone realizes. Again, just watch Unrest. God bless this woman Jennifer Brea for making this. No amount of medication or treatment or experiment on oneself is of lasting consequence with ME/CFS. My wife's and my life have been drowned by it -- but we have to think big picture.
If it is any help, Solve ME/CFS Initiative has a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.
Finally, read this story. Warning: it is depressing. But the only way this illness sees light is to show everyone what it can lead to ... some of which is absolute darkness, but sometimes greatness in the form of the saints in your life.
http://lobel.nu/anne.html
For ME/CFS to end, 1) people have to learn about it and 2) people with power have to be forced to address it. Just like everything else we are struggling with in this day and age.
Respectfully yours and grateful for anyone taking 20 seconds to even read about ME/CFS,
Uncle B
Hey all,
Classy move by ScruffyTheJanitor in posting this. A couple of Michigan alumns I know sent me Ace's story today and it hits home, as my wife has been dealing with ME/CFS for years. IT SUCKS. You almost would rather have something else.
It's important people learn about ME/CFS -- it has been appallingly ignored, dismissed, ridiculed and under-funded for research. But thanks to the film UNREST, we are at a critical point in history where this illness is turning the corner in public awareness and acceptance. We need for this also to happen in the medical community and with our government and insurance industries. Imagine the financial toll on top of the physical and emotional devastations an illness like this can have.
So, two things for now:
1) Watch UNREST (free on PBS site through 1/23) and see firsthand what Ace and his dad and scores of people deal with while learning about ME/CFS:
http://www.pbs.org/independentlens/videos/unrest/
2) Scruffy posted the perfect org to donate to, since Solve ME/CFS is pretty much one of the only organizations devoted to pushing for an ME/CFS cure on top of education and -- most importantly -- RESEARCH FUNDING. The US spends more money on hay fever research than something like this. So to directly donate, go to https://donate.solvecfs.org/
(Shameless plug: did a small campaign for that same Solve CFS/ME Initiative in honor of my wife if anyone would like to help me meet my goal, which is 3/4 done. https://www.crowdrise.com/o/en/campaign/putmecfstobed)
Or go to Crowdrise and connect a new campaign in honor of Ace like I just did for my wife. That would probably be appropo for this Wolverines community.
Ace if you are reading this, don't give up ever and let the people around you love and help you to no end.
Thank you,
Uncle B