Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

Kalliope said:
I have watched both films now.

Another high quality job! Informative and educational, but so heartbreaking. Thank you everyone behind and in front of camera for doing this! I hope the films will reach many people.
Click to expand...

I shared the films with my Dr Niece today.

The response

"3 GP friends already responded with thank yous. One is currently recovering from COVID and says she has a new found respect for people with ME xx"

= me :cry:

eta: emoji
 
I sent the dialogues for neglected illness videos - the Severe ME page of the website - to the doctors I’ve been dealing with (who have so far been causing much harm / stress to me). I asked them to watch the videos on that page including the hospital admission one.

I was so glad and it was really a relief that I had this resource to send to them :) videos and seeing individuals and doctors talking, is often so much more hard hitting and understood by others, than just reading text.
 
Andy said:
Natalie and team are now also on Twitter

Code: 
https://twitter.com/DialoguesMECFS/status/1324984812646649857
Click to expand...

*Quick list of interviewees for "Reduced Function" in order:
Dr Ben Marsh
Dr Nina Muirhead
"R"
Grace
Lydia
Linda
Graham McPhee
Naomi Whittingham
John Peters
Anna
Tom Kindlon
Vera Kindlon
Joan McParland

Planning on watching the other one tomorrow
 
Andy said:
Natalie and team are now also on Twitter

Code: 
https://twitter.com/DialoguesMECFS/status/1324984812646649857
Click to expand...

List of interviewees for "How does the disease start?" in order:
Dr Nina Muirhead
Grace
R
Lydia
Dr Ben Marsh
Linda
Catherine Hale
Joan McParland
John Peters
Anna
Naomi Whittingham
Edna (GP who first became ill during the time of the Royal Free outbreak!)
 
Activity Management – Pacing. https://www.dialogues-mecfs.co.uk/films/pacing/
A new Dialogues from a neglected illness video released. Pacing has become an important subject for some people following covid 19, so we interrupted the Patients’ Accounts of Symptoms series to edit Pacing. Then the NICE draft was published and Pacing became even more significant!! Patients’ Accounts of PEM and then Cognitive Difficulties, to follow soon.
Contributions from Mark VanNess and Todd Davenport from Workwell, interviewed in 2019, and also from Charles Shepherd, Luis Nacul and two biobank donors.
 
Cant wait to watch it. @Natalie these videos are amazing.

Just to let you know that the severe ME one helped me recently in a discussion with my carer & to give to neighbours who were making too much sound. I'm sure you know they are helping people but just wanted to let you know they making a difference to my life thank you for all your efforts with them
 
JemPD said:
Cant wait to watch it. @Natalie these videos are amazing.

Just to let you know that the severe ME one helped me recently in a discussion with my carer & to give to neighbours who were making too much sound. I'm sure you know they are helping people but just wanted to let you know they making a difference to my life thank you for all your efforts with them
Click to expand...
Hi Jem, Thank you very much. I'm so glad it was useful for you. I saw your post yesterday? about a video to show neighbours and was wondering about it... Did you see this animation - https://voicesfromtheshadowsfilm.co.uk/2018/animation-for-severe-me-day/ a friend of my youngest son made it after interviewing him. He had an ME like condition after Giardiasis and has been very sound sensitive at times. It is very watchable. Lovely drawings and a very nice animation. She won quite a few awards with it. It might be useful sometime.
 
Kalliope said:
Yet another great film. Thank you so much to everyone who has contributed to this project!

Interesting to see problems with facial recognition getting mentioned. Hadn't linked that one to ME..
Click to expand...
Yes, I picked up on that one, too. Some years ago I participated in a study on face blindness and turns out I am. Just mildly, the least blind of the blind, but definitely face blind. I'd never connected it to ME though. Of course it may have nothing to do with ME. Amongst the millions of pwME there must be handful of face blind people just by coincidence, face blindness is quite common. But if there's a significant number of people who definitely were not face blind before ME and now are, that could be more relevant. Face blindness is a cognitive dysfunction which can be measured. Unfortunately I've had ME too long to remember how I remembered faces before ME.
 
You must log in or register to reply here.
Back
Top Bottom