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Help Me Get My Letter To President Biden

I’ve written what I think is an excellent letter to President Biden asking him to allocate the proper $250 million in NIH research funding per year for ME/CFS.

I tell my personal story, I relate to him by telling him about working for his campaign for Vice President in 2008 (my last full time job), and I explain some of the devastating information about ME/CFS, its impact on patients’ quality of life, and the lack of funding.

My letter has been endorsed by 100 ME/CFS researchers from around the world. (This is huge)

Along with my letter, I include a beautiful graphic that was custom made by a fellow ME/CFS patient showing the number of people afflicted vs. the funding from NIH compared to other illnesses, a brief half page Bio, 4 captivating images of myself, the first of which is a collage of images of me before ME/CFS, the last 3 post-ME/CFS, all printed professionally on 8.5x11 photo paper. Then there is a list of the ME/CFS researchers endorsing my letter with quotes from some of them. All of this is spiral bound into a binder with a clear plastic cover and a blue plastic back. PDF versions of all of the contents of the binder are included on an attached CD which has a printed color label on it. The whole package looks professional and compelling.

I would like to post the letter here to share it with you all, but I want to show Biden the respect of letting him read it first. So I’m only sharing some images so you get an idea of what it looks like.

I am looking for people who either have personal connections to Biden and can get him a copy of the binder, or people who can reach out to their local Congressperson or Senator and have them agree to hand deliver a copy of my binder to Biden. A Senator is best but a Congressperson is good too. Anyone can do this. You just need to contact them, explain what the letter is and make an appointment to get it to them. It’s important that they hand deliver it, not just mail it. I have already mailed copies to the White House.

This is really important and a huge opportunity to get everything we have ever dreamed of. Please consider helping if you can.

I have mailed two binders to the White House and given a binder to a local Congressperson and one to a Senator to be hand delivered to President Biden. I have 35 more. They are very expensive to make due to the high quality images, so I can only send them out to people who can definitely get one into Biden’s hands. So please look into whether you can, either via personal connections or your local Senator or Congressperson (again, anyone can do this) and send me an email to whitney@whitneydafoe.com if you can get a copy to President Biden. Or use my contact form here

I have put a lot of work into making this binder as good as I possibly can for maximum impact. But I can’t do it alone. It will take people in this community stepping up and getting their local representatives to deliver a binder to make sure Biden reads it.

Contact your local representative. Ask for constituent services, and ask for the contact of the HLA (health legislative aide) in the office of your local representative. Explain to them about ME/CFS, the lack of funding, and the letter, and ask for them to hand deliver a copy to President Biden.

Please share this post and try to help if you can.

This is our moment. Together, we could finally get the funding for research that we all deserve.


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Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.








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