Another website I’m working on is less geared around my personal narrative and more geared toward specific activism.
It’s called https://openletteropenmedicinefoundation.com
An Urgent Action to Secure ME/CFS Research Funding
I need help with securing more commitments for research funding for ME/CFS, starting with our best congressional allies–in particular–Ed Markey from Massachusetts. While Markey has been one of if not the most vocal supporter of ME/CFS in the Senate, his legislative commitments have still been very small amounts of funding that are not close to what we need to get a cure soon. As a person with severe ME/CFS, I need help demanding better from our allies. While it seems counterintuitive to demand more from your allies than those who are indifferent, Ed Markey actually listens to patients and constituents, and so we have a better chance at getting through to him than we do with other people in congress. So I will provide a general phone script and then the contact info of his various offices. Please take a few minutes out of your day to do this:
BOSTON
975 JFK Federal Building
15 New Sudbury St
Boston, MA 02203
(617) 565-8519
SPRINGFIELD
1550 Main Street 4th Floor
Springfield, MA 01103
(413) 785-4610
FALL RIVER
222 Milliken Boulevard
Suite 312
Fall River, MA 02721
(508) 677-0523
WASHINGTON, DC
255 Dirksen Senate
Office Building
Washington, DC 20510
(202)224-2742
The Script:
Hello, Senator Markey. As a [patient] / [friend]/[family member]/[ally] of someone with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), I’m calling today asking for your help in securing large amounts of research funding for this disease. I know that you are the best ally to people with this disease that we have in Congress, however, even your recent bills asking for 15$million in funding for this disease, per year, are not enough to solve this crisis soon.
100$ million per year should be a bare minimum for ME/CFS funding. This is an amount that would start to give many patients hope. It’s also an amount that is justified by various metrics measuring disease burden and quality of life. One study measuring DALY (Disability Adjusted Life Years) found that the disease burden of ME/CFS far exceeded the money allocated toward it, and that the funding for ME/CFS should be over 100 million $/year. Another study (https://www.meaction.net/2015/08/01/me-patients-have-among-the-poorest-quality-of-life/) found that ME/CFS patients have the lowest quality of life among a number of common, serious illnesses. The suicide rate in ME/CFS patients is very high because of their untreated symptoms and low quality of life. However, most of us are too sick to make much noise with advocacy.
So, even if its difficult and doesn’t seem pragmatic, I’d like to ask the senator to commit to trying to fund ME/CFS at at least 100 million dollars per year, and hopefully more. I’d also like to ask the Senator to enlist progressive allies like AOC in this fight. If this public health crisis becomes more publicized, we will have a broader base of support to pass legislation benefiting sufferers of this disease. I think that it would also be helpful if the Senator continued to use his social media platform to promote awareness of this disease, such as materials by MEAction explaining the illness, and suggesting watching the film Unrest as an entry point into understanding the disease. Thank you for your time.