BedFest

#BedFest is a virtual festival organised by #MEAction to highlight the experience of living with (severe) Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (C.F.S.) through creative contributions. #pwme were invited to depict aspects of their lives through song, poetry, spoken word, painting and photography. The festival premiered on Saturday, May 6th 2017, building up towards #MEAwareness Day, May 12, 2017.

#Bedfest was inspired by a meeting with musician and M.E. sufferer Kaeley Pruitt-Hamm, who had recorded her EP Hi From Pillows from bed (debuted in May 2017), and by Bedstock, a virtual concert where musicians performed from bed to honor sick children who are stuck in theirs. As part of #Bedfest, Kaeley re-released her music video, Believe Her. This powerful version shows the faces of people from three continents who want to raise awareness about the doubts and disregard they face regarding their illness.

The #BelieveME project hopes to address misconceptions about the disease (i.e. the focus on psychological and denial of physical causes) by encouraging people with M.E. to photograph themselves in their daily reality and spread those images worldwide.

As part of the festival, #Meaction hosted a community call where participants discussed their work and what it meant to be creative while living with M.E.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

PwME Acronym for a "Person with ME" (myalgic encephalomyelitis).