UK: ME/CFS and Long Covid Group for Black Communities

[Andy]

"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

 

[Andy]

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/

 

[adambeyoncelowe]

This has reminded me to email Darren back!

 

[Jonathan Edwards]

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!

 

[Jonathan Edwards]

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

 

[adambeyoncelowe]

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.