Whitney Dafoe Yesterday at 8:00 AM · Merry Christmas from bed!
Santa was unhappy this year because he has a chronic illness that NIH refuses to fund or take seriously and so there are no real treatments and he has to be fed liquid food via a j-tube. Milk and cookies can’t be blended and put into the Jtube so he’s a bit grumpy this year. He put a lump of coal in Francis Collins’ stocking and the stockings of all the directors of NIH institutes.
On a more serious note, this can be an extremely lonely time for isolated ME/CFS patients. The holidays are all about getting together with family and many of us including myself will be alone this Christmas. But you are not actually alone. We are all connected and in this together. If you feel sadness taking over feel the connection to all the other millions of ME/CFS patients who are also alone today. We may be alone but we are alone together.
I will be wishing/thinking/praying for all of you today. Let’s all hope for a cure in 2021!
And on that note I have a small gift of hope for you for Christmas. I’ve been allowed to share some vague information about one of the many breakthroughs Superman has made at Stanford. They have studied the affect Abilify has on ME/CFS patients at a molecular level and figured out some ways to possibly accomplish some similar things in a much more effective way. I wish I could say more it is really exciting stuff. But it needs to be released to the public at the right time or it could negatively impact what is best for ME/CFS patients including future funding.
You just opened a box of HOPE for Christmas!!!
<3
Wasnt sure if it should go here or someplace else but wanted to post. Hope we get to hear the news soon. Aching for it, thanks whit and the fam. Merry christmas hope yall are best as possible.
Santa was unhappy this year because he has a chronic illness that NIH refuses to fund or take seriously and so there are no real treatments and he has to be fed liquid food via a j-tube. Milk and cookies can’t be blended and put into the Jtube so he’s a bit grumpy this year. He put a lump of coal in Francis Collins’ stocking and the stockings of all the directors of NIH institutes.
On a more serious note, this can be an extremely lonely time for isolated ME/CFS patients. The holidays are all about getting together with family and many of us including myself will be alone this Christmas. But you are not actually alone. We are all connected and in this together. If you feel sadness taking over feel the connection to all the other millions of ME/CFS patients who are also alone today. We may be alone but we are alone together.
I will be wishing/thinking/praying for all of you today. Let’s all hope for a cure in 2021!
And on that note I have a small gift of hope for you for Christmas. I’ve been allowed to share some vague information about one of the many breakthroughs Superman has made at Stanford. They have studied the affect Abilify has on ME/CFS patients at a molecular level and figured out some ways to possibly accomplish some similar things in a much more effective way. I wish I could say more it is really exciting stuff. But it needs to be released to the public at the right time or it could negatively impact what is best for ME/CFS patients including future funding.
You just opened a box of HOPE for Christmas!!!
<3Wasnt sure if it should go here or someplace else but wanted to post. Hope we get to hear the news soon. Aching for it, thanks whit and the fam. Merry christmas hope yall are best as possible.
