About #MillionsMissing 2021

#MEAction started #MillionsMissing 6 years ago after the suggestion of a passionate volunteer and we can’t believe how far we’ve come.

#MillionsMissing has always had a great impact virtually. Once again this year, #MillionsMissing will be virtual with many different opportunities for the community to engage with each other and take action.


This year #MEAction will highlight the strength and power of our community. Whether you have had myalgic encephalomyelitis (ME) for many years, are recently diagnosed, or are wondering if you might have ME, #MEAction is a place for you to find answers, find others going through similar situations, and find a way to take action. For many in this community, dealing with a chronic illness means spending a lot of time in isolation. At times, this can feel very lonely, especially when there are times you have been let down by the medical community and your country’s government.

This year’s #MillionsMissing is an opportunity to come together and recognize that we are stronger together. No matter where you are on your journey with ME or other chronic conditions, #YouAreNotAlone. The #MillionsMissing are missing with you.

  • If you have been living with ME for many years, you are not alone.
  • If you have been living with ME for a few years, you are not alone.
  • If you were just recently diagnosed with ME, you are not alone.
  • If you are wondering if you have ME after COVID, you are not alone.
  • If you have a chronic condition like ME and have been lost for years, you are not alone.
  • If you have long COVID, you are not alone.
  • If you have not been able to access compassionate, effective medical care, you are not alone.

Due to COVID-19, there will be #MillionsMore who will be joining the #MillionsMissing, whether by getting diagnosed with ME or other chronic conditions. So many people with ME develop the condition after an infection, up to 80% in fact, and evidence is mounting that a significant percentage of individuals will go on to develop ME after having COVID-19. Some viral infections have triggered ME at a rate of 10-12%.

#MillionsMore being diagnosed with ME highlights the the importance of the work #MEAction and the rest of the ME community have been doing for years. Now more than ever we must come together to bring about awareness and create change for people with ME. We have to let our health providers know we can accept nothing less than excellent clinical care and knowledge. Our lives can be made better by them.