Reflections of ME/CFS | FM | LC

The purpose of this video is to shine a light and bring awareness to the often unseen and debilitating nature of ME/CFS, fibromyalgia, Long COVID, and their co-existing conditions.
Background: We asked the lived-experience community and BHC staff to share reflections of their disease experience in the form of a picture, art, or poem. The poems can be found on the BHC blog.

[@qglamartelle3899]

Thank you for sharing your stories, thoughts, and art. You are not forgotten 💕

[@ryanholsapple5179]

My wife has been utterly bed bound for 10 months. She struggles to eat or even get up with my assistance to use bedside commode. This video was touching, thank you.

[@paigezuckerman572]

Y'all are doing truly amazing work. This is such an intractable illness, and it takes wholeness of courage to live with it AND treat it. Cheers to you all.

[@swfrances]

As one featured in this presentation, it is heartbreaking that so MANY people suffer from Myalgic Encephalomyelitis and now Long Covid. It is heartbreaking how much of our lives is lost to this illness. On a “good” day with M.E., I can be up and moving around doing small household chores, maybe going for a short shopping trip. After one of those “good” days of exertion, I usually have Post Exertion Malaise (PEM) and am usually bedridden not sure if I can even turn over in my bed or get up to use the bathroom or get something to eat. Nonetheless, I will continue to take advantage of “good” days and likely over exert. The feeling of near normalcy is wonderful even if the payment is gut wrenchingly horrendous.

[@erikjohnson4275]

It has been surprising to see that "The MORE raising awareness" the LESS willingness to ever look into the incident and evidence that actually started the CFS syndrome. Totally inverse reaction to what people say would happen.

[@brentparks8524]

Too bad I can't just call and make an appointment to get in to the Bateman Horne Center. 😡