UK: 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."

https://www.wellversedink.org/me

 

Connecting Black People With ME And/Or Long Covid In The UK

https://www.meaction.net/2021/07/16/connecting-black-people-with-me-and-or-long-covid-in-the-uk/

 

This has reminded me to email Darren back!

 

I not that the opening blurb refers to paper by Alison Wearden and Caroline Chew-Graham. It goes on to cite:

Without a diagnosis, patients can experience more severe symptoms and develop unhelpful illness beliefs or management styles, which then become entrenched making any subsequent treatment more difficult (Phelby and Saffron,2004).

I am not sure that whoever is constructing this site has a clear idea of what is helpful and what is not when it comes to info on ME!

 

It looks like the second references really Saffron and Pheby, 2009? It may be good paper but the quote is a bit confusing.

 

I will have a look at the quotations and have a chat with Darren. He seems well meaning but is probably not a scientist.

TBH, I think most people won't even read all the text, as it's quite long.