support groups

Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: a mixed methods study. William U Meyerson; Rick H Hoyle Encephalomyelitis/chronic fatigue syndrome...

Highlights • Co-produced peer support can help people living with Long COVID. • Increasing the use of effective peer support may reduce health inequalities. • Inclusive peer support can benefit ‘hardly reached’ Long Covid cohorts. • Linking biomedical, relational and socio-political styles are...

ABSTRACT Background Fibromyalgia (FM) is a diagnostically controversial syndrome characterized by chronic widespread pain, fatigue, sleep difficulties, cognitive dysfunction, and mental health symptoms. Though online peer support groups (OPSGs) may help persons with FM access support and...

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 person https://www.wandabelisle.com/ according to her website " FEATURED on

Includes a section on PEM/Pacing and another on ME/CFS: (I've not read either yet). https://longcovidfamilies.org/learn-about-long-covid/research/

ABSTRACT Background: Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with...

Abstract Objective To explore the crisis of identity in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the lens of Communities of Practice. Methods A closed Facebook group was created to gather qualitative data from participants diagnosed with CFS/ME (n = 22). Data were...

Opinion piece in the BMJ Conclusion Going forward, we recommend: Acknowledging that patients with long term conditions may experience challenging forms of “identity loss” which may lead them to feel more vulnerable. Addressing stigma in healthcare as well as in communities and workplaces...

"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 create community with the aim of improving our wellbeing. The group will be led by our Darren, who will use his skills as a Community Builder to...

ABSTRACT Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition that can negatively affect physical and mental health [1,2]. People with ME/CFS report lower perceived levels of social support, which further exacerbate challenges with mental health and...

Abstract Objectives Health services to date have inadequately addressed the physical and mental health needs of patients with medically unexplained symptoms. This qualitative study evaluates a piloted facilitated support group (FSG) developed for patients with medically unexplained symptoms to...

(I haven't listened to it so cannot comment on content)

Abstract Objectives To examine the level of activity in online discussion forums for chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) compared to other disorders. We hypothesized the level of activity to be higher in CFS/ME online discussion forums. Design Observational study Setting...

Paywall, https://www.sciencedirect.com/science/article/abs/pii/S0399077X20307265 Sci hub, https://sci-hub.se/10.1016/j.medmal.2020.09.026

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 visiting members to give them advice and help them access services. Currently all our systems are very rudimentary and predominantly paper based, with...

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:

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. It is interesting that this sociologist is unquestioningly buying into the assumption that those with contested illness are not really ill at all...