peer support

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...

ABSTRACT Background: There are around 1.3million people in the UK living with the devastating psychological, physical and cognitive consequences of Long COVID. UK guidelines recommend that Long COVID symptoms are managed pragmatically with holistic support for patients’ biopsychosocial needs...

Does anyone know of papers exploring online ME patient communities? Don't know quite where to start..

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...

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...

Free full text: https://bmjpaedsopen.bmj.com/content/2/1/e000299 http://dx.doi.org/10.1136/bmjpo-2018-000299

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...