ME/CFS and Long Covid Group
for Black Communities
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 facilitate these conversations.
Other group members will be invited to share their skills and lead too. There is no pressure to do so though; contribute as much or as little as you are comfortable and able to.
This isn't a creative writing group, so don't feel pressured to be creative.
An extract from an article published by the Cambridge University Press in 2013 highlights:
“Studies in the United Kingdom and United States have shown that ethnic minority groups have a higher prevalence of CFS/ME than White groups, but are less likely to be diagnosed (Dinos et al., 2009; Horton et al., 2010; Bhui et al., 2011).
This suggests that these groups may face additional barriers to the diagnosis and treatment of CFS/ME.
Despite these findings, relatively few studies have investigated the problem of CFS/ME in BME people (Torres-Harding, 2002).” And this is still the case.
Darren's diagnosis of ME took 13 years to come about after suffering from Glandular Fever at the end of 2000, at age 15, and presenting symptoms of ME in 2001.
Diagnosis was crucial to dealing with the physical and mental impacts of the condition. Getting support during COVID-19 was heavily delayed, which exacerbated his symptoms during an already difficult period.
These findings and experiences resonated and motivated him to find other Black people living in the UK with ME to hear their stories around diagnosis and treatment and build a community of support for one another.
This is especially important in this era of COVID-19 where it has been widely reported that people from minority ethnic communities have been disproportionately affected and with Long Covid patients set to add to the 250,000+ people living with ME in the UK.
The group will begin summer 2021 and will be shaped by its members. We feel this is important as it takes energy levels and other potential barriers into account. The shaping will include, but is not limited to, the day and time the sessions occur, as well as the duration.
The group is open to anyone aged 18+ of Black or Black-Mixed ethnicity living with ME/CFS or Long Covid in the UK. You will need Internet access and a computer/phone/tablet with Zoom installed.
We understand privacy is vital, so everything discussed in the group will be confidential, as will the identity of members, unless authorisation is given to share such information.
To register please fill in the short form below.
To learn more about ME/CFS, see ME Action's MEpedia.
For resources and other groups, please see ME Action's List or the ME Association, which also has information around diagnosis of ME/CFS for young people.