A Pause Before Severe ME Day 2021

Our community is fighting every day to bring hope, health and justice to people with myalgic encephalomyelitis (ME). In August we especially take time to honor the 25 percent living with the most severe form of this disease and remember those who have died from ME.

August 8th marks the Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance, which was started in 2013 by the 25% ME Group as a response to the death of Sophia Mirza from the UK.

Over the years the community has marked this day in different ways. #MEAction has shared stories of those with Severe ME to shine a light in those darkened rooms. We have shared a virtual choir and offered special spaces for people with severe ME to try and come together. This year we are honored to share art from people with severe ME. 

Before we begin the sharing we want us all to take a collective moment together to send our love and our promise to remember and to keep up the fight as long as we are able to those out there with the most severe form of the disease. We hold you in our hearts and minds as we show up and build this global movement so that all people with ME will have support and access to compassionate and effective care. 

We know the extreme isolation endured due to this illness leaves some unable to communicate back to us. We hope that those who cannot be online or maybe only rarely can hear news from the community feel our determination and commitment to them. We see you in a way that many cannot. You are just as much a part of our community as those more able to participate. You are valued and worthy. We are holding space for you and cannot wait for the day you can join us again. We are fighting for you to get that day. 

We also remember the far too many that we have lost. We grieve together. We remember together. We hold all who grieve in love. 

At the beginning of our time marking Severe ME Day we want to pause to remind you to take care of yourself. The stories shared are moving and hit us deeply. Some of us grieve because we can no longer share our stories with the world through art or otherwise. Practice true self care now. That might mean a break from social media at times. It might be reaching out to talk to a therapist or trusted friend or reaching out in a support group. It might mean that you share your story but you do your best to let go of the results of that share or maybe it means holding someone else’s story close. 

We remember and honor those in our community with severe ME and those we have lost and we hold space for all of our experience with ME. Let’s lift one another up when able. Know that each of us has an international community where you belong and where we work together to ignite a revolution in ME care. We are stronger together. 

For some extra help practicing self care we would like to refer to this helpful article by Jo Moss, a person with severe ME, on her blog A Journey Through the Fog.

Finally if you or someone you know is dealing with suicidal thoughts please reach out to one of the resources listed here.


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