The #MillionsMissing Global Petition for ME Equality
Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a systemic neuroimmune condition that causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.
An estimated 15-30 million people around the world are suffering from ME. Approximately 75-85% of them are women and 80-90% of them are undiagnosed.
The human cost of the current medical and policy neglect is tremendous. At the “mild” end of the spectrum, patients who still work may lose 50 percent of their previous function. Others are forced to abandon careers they loved - and the ability to support themselves and their families. Twenty-five percent of patients are shuttered in their homes or trapped in bed. At the most severe end of the spectrum, patients may live the rest of their lives in darkened rooms, unable to tolerate light, sound, or human touch. Only 4-8 percent fully recover.
ME medical costs and lost productivity result in an estimated US $20 billion each year. In the US and the UK, there have been numerous cases of children being taken away from their parents and placed in foster care. In Europe, some severely ill patients have been forcibly institutionalized.
Despite this incredible social cost, research is severely underfunded by governments across the globe.
That is why we call on every government in the world to formally recognize ME and sufficiently fund research at the levels needed to treat and, ultimately, find a cure.
ME Research Funding Statistics Around the Globe:
1) In the US, ME research funding is between $3-8 per patient per year. A similarly disabling disease such as multiple sclerosis receives about $242 per patient per year.
2) In the UK, MS has received 20 times the funding as ME.
3) In Canada, where 1.9% of the Canadian population have been diagnosed with ME, funding for ME patients averages around 11 cents per patient.
4) In Australia, approximately AUD 110,000 is allocated to ME/CFS each year.