Stacks Image 2755

Help get my letter to President Biden - a second plea

Last week I asked for help getting my letter to President Biden and only a few people responded offering to help. I’m sorry but this isn’t ok. Congress is currently debating a huge funding bill and this is a critical opportunity to finally get the funding for the cure we all dream of. If we can get $250 million dollars in NIH funding per year for ME/CFS, research will move forward at an exponential rate and we will find a cure soon.

I know some of you are too sick to reach out to your local representative, but there are many people following this page with mild ME/CFS, and many carers and supporters as well who could help with this. The amount of energy you all put into dealing with ME/CFS everyday is far more than the energy it would take to reach out to your local congressperson or Senator, ask them to hand deliver a letter and get one to them. I have put a huge amount of work into making and printing these binders. I need your help to finish the job and get them to Biden.

Please think about what is at stake and find the time to help with this initiative. I have 30 copies of these binders but they are very expensive to make due to high quality printed images, so I can only send one to you if you contact your representative and know they will deliver it to Biden. So start by contacting your representative and explain about ME/CFS, the lack of funding, and this binder and if they will deliver one to Bien please email me here.

I will ship one to you for free.

To make this easier for you, here are links to find your local representatives and an email you can copy and paste to send them.

Getting your Senator to deliver a Binder is best, but a Congressperson is wonderful too.

To find your Senator, go to this website, enter your state and other info in the drop down menus at the top of the page.

https://www.senate.gov/senators/senators-contact.htm

To find your local Congressperson, follow this link, enter your zip code and it will show you your representative with a link to their website. Phone is best, but you can contact them by phone or email, whichever is possible for you and available on the site.

https://www.house.gov/representatives/find-your-representative

Here is an example email to send, or use as a guide for what to say on the phone (a phone call is better if possible):

———————————————————————————————

Dear (representative’s name),

My name is XXXXX and I have a serious chronic illness called Chronic Fatigue Syndrome, otherwise known as Myalgic Encephalomyelitis (ME/CFS).

I have a letter written to President Biden by a prominent member of the ME/CFS community named Whitney Dafoe that is spiral bound into a binder and includes a graphic of the funding disparity, and 100 endorsements of the letter from ME/CFS researchers all over the world including many Nobel Laureates and world renowned, award winning scientists. I would like to meet with you or speak with you or your health legislative aide to organize getting you this letter. I would like to ask you to hand deliver it to President Biden to make sure he reads it.

ME/CFS affects 4 million Americans. Twenty-five percent are estimated to be severely affected, being bedridden with little to no functioning. Studies have shown this population to have the lowest functioning of any chronic illness, comparable to terminal illnesses like end-stage AIDS or end-stage renal failure. There is no known cause or cure, though researchers have found unique abnormalities in the immune system, circulation system, ATP (energy) production, physical response to exercise, and autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord. Some people improve with time but many are bed-bound for decades. It is estimated that only 4% of those with severe ME/CFS have any type of recovery. To die of this illness is unusual. To hover in an in-between state where one experiences a 'living death' for years or decades is quite typical.

Despite the ravages of ME/CFS, it is one of the least funded illnesses. Multiple Sclerosis is less severe in its impact on patients' quality of life, and affects half the number of people. Yet it receives $100 million per year from NIH for research. HIV receives $28 billion per year and affects one quarter of the number of people. ME/CFS research received $15 million last year. With so little funding, there is no hope for the millions of people suffering from this illness.

Here is a link to a graphic showing the funding disparity of ME/CFS compared to other illnesses.

https://www.whitneydafoe.com/mecfs/funding_graphic

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis is an extremely devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my career, my hobbies, everything that brought meaning to my life and all sense of humanity.

ME/CFS is defined by what is called post exertional malaise. This means that ME/CFS patients have a reduced amount of energy compared to healthy people. But most importantly, when an ME/CFS patient pushes themselves over this reduced limit, they don't recover like healthy people after some rest. The illness gets worse, often permanently. There are many more symptoms including inability to think clearly, muscle and nerve pain, poor sleep, sensitivity to colors, sounds, light, noise and other stimulus that forces the brain to use more energy than a severe ME/CFS patient has available, digestive problems likely caused by nervous system malfunction that controls the stomach muscles. And many more.

As a nation, we need to invest in ME/CFS. It costs America an estimated $25 billion per year in lost productivity and medical care. ME/CFS destroys millions of lives, tears families apart and shatters dreams as people are isolated in bedrooms, nursing homes or left homeless with very little medical or societal understanding or support. All genders, races, ages, and socio-economic backgrounds are affected. Anyone could wind up sick with ME/CFS and just drop off the map. And we lose everything that person would have become or contributed to the world.

As a nation, we need to invest in ME/CFS.

(Optional: add your personal story and experience with ME/CFS, for example how it has affected your life and what you have lost)

Millions of Americans are suffering horribly from this disease and with so little funding there is almost no hope for any of us to recover. With proper funding, researchers could find a cure. This is a curable disease, but we don’t even have treatments right now because there is so little research funding.

Please help these millions of suffering patients and hand deliver Whitney Dafoe's binder to President Biden.

Thank you for your time,

(Your name)
(Your email address)
(Your phone number)
(Your address)

———————————————————————————————

Please, please find the time to reach out to your local congressperson or Senator, to ask them to hand deliver a binder with my letter to President Biden.

This is our chance. Let’s act now and take advantage of it. Congress is currently deliberating a huge funding bill and if they know the grave injustice and suffering faced by ME/CFS patients it is within their power to very easily add $250 million per year for NIH funded ME/CFS research. Now is our moment.

Thank you for everything you do.

Love,
Whitney

Here are some example pages in my binder to President Biden…


me-cfs_2nd_letter_to_biden_2


me-cfs_2nd_letter_to_biden_3


me-cfs_2nd_letter_to_biden_4


me-cfs_2nd_letter_to_biden_5


me-cfs_2nd_letter_to_biden_6

There are many more pages of endorsements, these are the first two…

me-cfs_2nd_letter_to_biden_7


me-cfs_2nd_letter_to_biden_8

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








Blog Archives
Index

Year / Month