Government and healthcare systems around the world fail to classify myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Diagnoses are often delayed for years, disability qualifications are complicated, and our health care is at risk. ME receives far less funding for research relative to disease burden (only 3-7% of comparable illnesses), despite massive economic costs.  Over and over again, people with ME and Long COVID are asked to prove their medical frailty - how sick we really are.  

This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is. We ask you to share your story on social media, once again, about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve.

 
In the U.S., our community risks losing their government health insurance (Medicaid) unless they can prove they have a "serious or complex medical condition” in order to get a "medically frail" exemption.  

 

In the UK, individuals are at risk of starving in hospitals because ME is still not taken seriously.  Doctors and researchers still psychologize ME, despite the updated NICE guidelines. 

Globally, ME is severely underdiagnosed, and there are still few ME clinicians available. We often face the danger of being misdiagnosed and admitted for psychiatric care in some countries. 

All of these injustices happen because ME is not taken with the seriousness we deserve. It’s why we are asking you to amplify the medical frailty of ME. We are frail and furious and we need you to join this fight!