MECFS by the Numbers. Statistics About Myalgic Encephalomyelitis You Might Not Have Known.
15 to 30 million people worldwide have ME
An estimated 20 million people worldwide have not recovered from Long Covid.
(ME Action 2021)
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10-12% of people who experience a severe viral infection in their lifetime will go on to develop ME.
25-30% of Covid patients continue to have symptoms months after initial infection.
(ME Action 2021)
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There are more than 60 confirmed symptoms of ME. Some of the most common are
- Extreme fatigue
-Sleep disruption
-Brain fog
-Post-exertional malaise
-Muscle and joint pain
-Headaches
-Irregular heartbeat
-Digestive issues
-Shortness of breath
-Tender and swollen lymph nodes
-Reduced immunity
-Increase chemical sensitivity
-Light and noise sensitivity
(Mayo Clinic 2020)
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75-80% of people with ME are female.
(Emerge 2021)
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25% of people with ME are severe meaning they are virtually or completely housebound and mostly bedbound.
(25% ME Group 2021)
An estimated 70% of people with ME are too sick to work.
(Open Medicine Foundation 2021)
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MECFS has an economic burden of 36-51 billion dollars per year in the US alone.
(Open Medicine Foundation 2021)
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Only 5% of people with ME recover.
(Health Rising 2021)
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The NIH provides ME with 14x less funding than necessary to be funded equally to its disease burden.*
ME has a Disability Adjusted Life Years or DALYs burden 2x higher than Multiple Sclerosis (MS).
*According to a calculated estimate based on DALYs for NIH-funded diseases.
(Health Rising 2021)
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Sources
ME Action Website
https://www.meaction.net/learn/what-is-me/
Mayo Clinic 2020 MECFS Guidelines
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
25% ME Group Website
Emerge Website
https://www.emerge.org.au/what-is-mecfs
Open Medicine Foundation Website
https://www.omf.ngo/what-is-mecfs/
Health Rising Article "Study Finds ME/CFS Most Neglected Diseasd Relative To Its Needs"
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Please click through the link in my bio to vote for Open Medicine Foundation @openmedf in Project for Awesome Nerdfighteria.
MECFS is funded at 1/14th the amount proportional to its disease burden. Only 5% of pwME recover and 70% are unable to work.
Today is the first of 2 days of the Project for Awesome a charity live stream event by Nerdfighters around the world. I have been a member of Nerdfighteria since 2013 and have never felt more passionately about a worldsuck issue as I have about severe ME. But because of being bedbound due to Myalgic Encephalomyelitis, I have been too ill to produce a video about ME the way I did in the past about Behcet's Disease.
This illustrates the exact issue with trying to raise ME awareness and create ME Action and ME Research. Breanna the creator of this video is part of 5% of pwME who recover. But so many of us do not, and our loved ones are too focused on caring for us to raise awareness. Imagine if charities like This Star Won't Go Out had only volunteers who were actively caring for the cancer patients they help in the last few months of their lives. It would make doing the amazing work they do so much harder. That is the dilemma we face in helping raise awareness for ME.
We do not die. But our living death will never end until research is done. Open Medicine Foundation is a crucial central point coordinating and creating that research for me and for the millions missing with MECFS and millions more with long covid.
So please click a link and vote, and if you can afford go to @openmedf and donate directly.
The link to vote for this video and the open medicine foundation will be in my bio until voting closes in about 48 hours.
