Richmond and Kingston
ME Group
Richmond and Kingston
ME Group
Richmond and Kingston
ME Group
Richmond and Kingston
ME Group
Richmond, Kingston &
West London M.E. Group
Aiming to reduce M.E.'s impact on our lives
Stuff Happening
You may be interested in these upcoming ME related events run by other groups & organisations
Click the name of the event you're interested in to jump to further information
OMF - PEM: Your Lived Experience
15th July 10pm - Zoom
ME/LC in South Asian Communities
22nd July 6-7pm - Free live online event
AfME PRIME PEM Webinar
30th July 2-5pm - Zoom
____________
OMF - PEM: Your Lived Experience
15th July 10pm - Zoom
The Open Medicine Foundation (OMF) are a highly regarded ME Research organisation, but US based - which is why this event is at 10pm our time, suitable only for night owls! The OMF's recent Patient & Caregiver Survey indicated their members want PEM symptom worsening to be a priority for treatment research. In order to trial treatments on post-exertional symptom worsening and crashes and properly measure the success of those treatments, they need to better understand what the terms really mean to the people who experience them.
LIVE EVENT
Open Medicine Foundation and Renegade Research are hosting a live session on July 15 at 10pm UK time focused on crashes and post-exertional symptom worsening in ME/CFS. The session will bring together patients and researchers, with the goal of addressing the following questions:
Definition and presentation: What are crashes vs post-exertional symptom worsening? What are the different experiences of them? What are the different triggers?
Measurement in research: How do we measure crashes? How do we measure post-exertional symptom worsening?
This webinar will help shape their treatment trial priorities and design. Help them translate your lived experience into trial-ready information by participating in the conversation. Register for the webinar
_______
We are grateful to #ThereForME for the following information:
ME/LC in South Asian Communities
22 July 6-7pm Free live online event
“You’re Not Imagining It: Long Covid, ME and invisible illnesses in South Asian communities”. Hosted by BBC radio presenter Asma Younus, the event brings together leading clinicians for a conversation about Long Covid, ME and other invisible illnesses.
And why is this so important? Research shows that white individuals are approximately five times more likely to be diagnosed with ME than those from South Asian, Black and other minority ethnic backgrounds — a disparity greater than for many other common diseases. These communities are not only missing out on diagnosis, but are also underrepresented in the research that will shape future treatments. Register for free on Eventbrite to find out more.
____________
_______
AfME PRIME PEM Webinar
30th July 2-5pm - Zoom
PRIME stands for building infrastructure for Patients, Researchers and Industry for ME/CFS.
Key to generating relevant ME research proposals is ensuring potential researchers understand the fundamental importance of PEM! This webinar includes presentations from Maureen Hanson and Todd Davenport among others. The webinar will ask various questions about PEM, including: what it is, what causes it, and how can it best be explained and defined?
AfME have told us that the webinar is primarily aimed at researchers, but people with lived experience are more than welcome to participate. It will be recorded so you will be able to pause/rewind/rewatch/revisit it once it is uploaded to their YouTube channel
If it helps, you can also see the programme to see what time each talk is on and then fast forward or join the live webinar at that section. They aim to have presenters talk for 20 minutes each, followed by a 10-minute Q&A.
More info here. Click here. to register