Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long...
Highlights • Co-produced peer support can help people living with Long COVID. • Increasing the use of effective peer support may reduce health...
ABSTRACT Background Fibromyalgia (FM) is a diagnostically controversial syndrome characterized by chronic widespread pain, fatigue, sleep...
Does anyone know of papers exploring online ME patient communities? Don't know quite where to start..
See also News from Scotland _________________ Moved from the News from the MEA thread. not news from MEA as such; but anyone know about this...
Long Covid Families collects relevant research & helpful resources for our community via AirTable databases to allow for search and sorting. Our...
ABSTRACT Background: Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged multifaceted...
Abstract Objective To explore the crisis of identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the lens of...
Opinion piece in the BMJ Conclusion Going forward, we recommend: Acknowledging that patients with long term conditions may experience...
"This is an online group for Black and Black-mixed adults living with ME/CFS or Long-Covid in the UK. It is a safe space to share experiences and...
ABSTRACT Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical...
Abstract Objectives Health services to date have inadequately addressed the physical and mental health needs of patients with medically...
Having a chronic illness as a young adult can be isolating. Healthy peers don’t understand and the medical world feels designed for older people....
Abstract Objectives To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME)...
Objectives: To describe the role of the internet and cognitive biases in the controversy surrounding chronic Lyme disease. The attribution of...
I've become involved with a regional patient support group. A very good nurse was employed about 6 months ago whose part-time role includes...
Halp. Looking for a resource on this? I'll start the hunt through Phoenix Rising, but if someone has it handy, I'd really appreciate it.
Something to be aware of for anyone who makes use of support groups on Facebook: Huge groups of vulnerable people looking for help are a rehab...
Hey everyone! The Facebook group can be found Hope to see some of you there :)!
One for those who enjoy being wound up by this stuff. The main example they discuss is fibro, not ME, but that's unlikely to reduce your outrage....
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