CFS Funding: Cut COMPLETELY From CDC Budget

One of My Bed-bound Years (2010)

I have spent 17 years with CFS and Dysautonomia. I have spent endless minutes, days, weeks and months in bed or reclining, unable to leave my house except for brief outings or appointments. I have suffered more than I ever thought imaginable. I still spend a lot of time in bed. It's hard to look at these photos of myself from years past, but it's a stark reminder of how this illness has affected me and my family.

People with CFS have a lower quality of life than those with many other chronic illnesses, and it is estimated to affect at least 1 million Americans, many of whom get sick during adolescence. 

Research is already limited and mostly relies on philanthropy. Precious few doctors have the knowledge or willingness to treat CFS patients. 

It's incomprehensible to me that, to begin with, federal funding for CFS in the current CDC budget was set at only $5.4 million. 

Now, CFS funding has been completely stricken from the Senate's 2016 version of the federal budget.

Really? No money for CFS? At all. 

It's the only disease for which funding was cut completely.

If you feel compelled to try to change the situation, please do so this week by participating in this email campaign to ask that federal funding be reinstated. 

I realize that we are all overwhelmed and busy, so I don't want to pressure anyone to do this. I do want to make people aware of the lack of funding, and give you the opportunity to participate if you are so inclined. 

Thank you in advance!

All of the details are below.

Blessings,

Emily

Smiling, but Still Mostly Reclining and Homebound (2012)

Please address your email to the following four staff members that serve the Senators on this particular budget committee (just copy and paste):

Laura_friedel@appro.senate.gov; Chol_pak@appro.senate.gov; Alex_Keenan@appro.senate.gov; Lisa_bernhardt@appro.senate.gov.

Here is a sample email for you to send. You can choose to/not to add to it.

Dear Senator:

I am writing to urge you to reinstate the $5.4 million for Chronic Fatigue Syndrome funding. This is included in the CDC budget under Emerging and Zoonotic Infectious Diseases, on Page 59 of the Senate Budget.  
I understand that the $5.4 million in funding submitted by the Centers for Disease Control for Chronic Fatigue Syndrome has been stricken from the 2016 appropriations bill by the Senate Appropriations Committee. This is an appalling act of inhumanity, and I urge you to reinstate the $5.4 million amount into the 2016 budget without delay.

As you may be aware, the prestigious Institute of Medicine of the National Academies published a landmark report on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Feb. 10 of this year. The IOM committee unequivocally and scientifically established that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a physiological, not psychological, illness. The IOM stated firmly that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is “a serious, chronic, complex, multisystem disease... In its most severe form, this disease can consume the lives of those whom it afflicts.”

The IOM committee further established that between 836,000 and 2.5 million Americans suffer from this devastating disease, which carries with it an economic burden of $17 to $24 billion to our country annually.

I am one of those Americans who has had their life and livelihood stolen by this illness, which renders 25 percent of us house- or bed-bound at some point. While the vast majority of us are not well enough to march on Capitol Hill to demand equitable funding from our government, rest assured we are still able to vote via absentee ballot.
As a member of the Senate Subcommittee, I urge you to reinstate this $5.4 million CDC funding immediately. You have an opportunity to be on the right side of history.

Sincerely,
Name
Email address
USPS address

Here is a link to the page where I am getting my information:  http://solvecfs.org/cdc-letter. 

The Solve ME/CFS Initiative is an excellent organization. Dr. ANS has worked closely with them for many years and received funding from them. The Solve ME/CFS Initiative was the first organization I had available to me when I first got sick.