Today, August 8th, is Severe ME Awareness Day. In this special episode, we hear directly from eight people living with severe Myalgic Encephalomyelitis (ME/CFS): Fran, Nevra, Adrienne, Malaika, Niko, Quella, Annika and Annabelle (a 10 year old girl with very severe ME). ME/CFS is a complex, chronic, multisystem disease affecting an estimated 17-24 million people worldwide. Its hallmark symptom is post-exertional malaise (PEM), a worsening of symptoms after physical, cognitive, emotional, or sensory exertion that can leave patients significantly worse for days, weeks, or longer. Despite affecting millions of people, ME remains one of the most neglected diseases in medicine. There is still no diagnostic biomarker, no approved disease-modifying treatment, and research funding has historically been disproportionately low compared with the illness's prevalence and burden. Around 25% of people with ME are severely affected, meaning they are mostly or completely bed bound and often unable to tolerate light, sound, touch, or movement. Many require full-time care, yet remain largely invisible to society and are frequently failed by healthcare, disability support, and home-care systems. Our guests describe bedbound routines, constant symptom burden, the loss of independence, creativity, relationships, and any certainty about the future. They speak about the reality of living in dark, silent rooms; the misunderstandings surrounding exertion and "rest"; and the systemic failures that leave many people with severe ME without adequate medical care, disability support, or the assistance they need to survive with dignity. If you are in a position to help financially, please consider supporting ME/CFS research and organizations working to improve care for people with this disease. Donations to the Open Medicine Foundation, Bateman Horne Center, or the 25% Group can make a real difference in the lives of people with severe ME. There is also an urgent need for mutual aid within the severe ME community. People living with severe ME are unable to work and often struggle to afford essential medications, care, support, equipment, and simply to cover everyday living costs. They rely on regular donations just to meet their basic needs. Nevra, who we spoke to for today's episode, depends on such community support. You can support her here. Timestamps: [00:00] Introduction [01:02] What is ME/CFS [04:44] Life with severe ME [08:22] Experiences of people with severe ME [08:51] “ What does a typical day with severe ME look like for you?” [14:17] “ what has been the most difficult loss or change caused by very severe ME?” [18:53] “ What's something people almost always misunderstand about severe ME?” [24:15] “ If everyone listening could understand just one thing about severe ME, what would you want it to be? [28:41] “Severe ME is…?” [30:11] Call to action and closing A written version of this episode and the full transcript are available on our Substack, along with a glossary to help explain commonly used terms. If you enjoyed this episode, please subscribe so you don’t miss future episodes of the COVID Longhaulers Podcast. You can also join our Discord server to connect with the community, and find all of our other links here. Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team.
