Thursday, May 23, 2019

ME/CFS Community Update

“Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.' ” C.S. Lewis
I am still trying to catch up from my many travels the past two months. I finally cleared my e-mail inbox, but the list of things I want to cover here on my blog just keeps getting longer! I'm going to split the news I want to share with you into Community Updates and Research Updates.

Today's focus is on patients, with lots of exciting news from the worlds of patient communities and advocacy:

Our Own Local Support Group
The local support group I started nine years ago has grown to about 40 families in our region, with a variety of related conditions including ME/CFS, Lyme, EDS, POTS, and more - some with sick adults and some with sick kids, teens, or young adults. We had one of our local gatherings yesterday, meeting for lunch at a restaurant, with ten from our group able to attend. About half were mothers of sick teens/young adults and the other half were sick themselves, and two people were fairly new to our local group and had never met anyone else before. As always, the experience of meeting others with the same illnesses and experiences was reaffirming and helpful to us all. We talked for almost three hours (then I went home for a 90-minute nap!) about effective treatments, the best doctors in the area, our experiences, and more. It is always a very positive, supportive, and uplifting experience, even for someone like me who's been in the group since the beginning and sick for 17 years. As always, I highly recommend that YOU try to find others in your local community - it is life-changing. This article I wrote, Birds of a Feather - The Joys of Community, tells how our group started and provides tips for finding others in your area.

ME/CFS International Awareness Day and #MillionsMissing
This summary and photos from #MEAction of protests and activities held both publicly and online on ME/CFS International Awareness Day all over the world is truly inspiring. Take a moment to read through all the amazing events held on May 12 and to peruse the many photos of patients speaking up, in public and from their beds. Given how isolated and alone most of us were when we started on our illness journeys, it is stunning to see this evidence of patients coming together all over the world to be seen and heard. It gives me even more hope for a better future for all of us. If you didn't have a chance to take part in Awareness Day activities, in person or online, this year, maybe this moving sum-up will inspire you to get involved next year, if even from your couch or bed. After decades of isolation and ignorance, our voices are finally being heard, and it's a powerful thing to see.

Exciting News from Patient Advocate & Community Leader Jen Brea
It's been all over the internet this week - Jen Brea, co-founder of #MEAction and the filmmaker who created the ME/CFS documentary Unrest, is officially in remission. This blog post describes in her own words what happened and how she got to this point, and it's a remarkable story, given how severely disabled Jen was at various times and how well she is now (though still working hard at recovery and rehab). In her case, the underlying cause of her ME/CFS was several mechanical factors in her spine and neck that were corrected with multiple surgeries, something she and her doctors discovered entirely by accident. Although obviously, this will not be the case for every (or even many) ME/CFS patients, I do know others like her and it is likely behind some percentage of ME/CFS cases and so provides clues as to the wide variety of causes and factors in our very complex condition. In that post, Jen describes her elation at her remission, yes, but also her grief, trauma, guilt, and hope. Even if Jen's case is entirely different from your own, we should still be able to share in her triumph and learn from her experiences. There is still so much we have to learn about the various causes and factors behind ME/CFS for the millions of people suffering around the world - many of whom Jen has helped with her film, her advocacy, her activism, and her honest reaching out to others.

Jen Brea and her husband

Other ME/CFS Blogs
Finally, if you're looking to connect with others with ME/CFS online, Liz of the Despite Pain blog, put together a wonderful list of ME/CFS bloggers. Liz doesn't have ME/CFS herself, but she compiled this list for ME/CFS Awareness Day, in honor of her fellow chronic illness patients who do have ME/CFS and to help build awareness for our cause, which I think is a remarkable way to reach out. Check out her list (including this blog!) and go discover some new-to-you bloggers and other ME/CFS patients. It's a great way to begin building YOUR community!

Do you have any news to share from your local or online community? Leave a comment below to help spread the word and connect to other patients.


Seeking Serenity and Harmony said...

I absolutely love the quote you used “Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.' ” C.S. Lewis I had not heard that one before. I love it. Great post. Keep writing. :)

Sue Jackson said...

Isn't that a great one?? It just so perfectly captures what it;s like to "meet" someone online or join a group where everyone has similar illness experiences to you :)