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

Fantastic. And fantastically done. As always.

So invaluable. Thank you @Natalie

 

As I've said earlier, these are great videos and a great resource for the community. Well executed, good quality, good content. Bravo!

 

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

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.

 

*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

 

Excellent videos. Again. Of course.

Thanks to all involved, and especially for stressing how much patients' families are affected, too.

 

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

 

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.

 

Hi @Natalie yes i have seen that and thought how wonderful it was, gorgeous drawing.

 

The third in the collection of Patients' Accounts of Symptoms is now up - Post-exertional malaise or Post-exertional symptom exacerbation... as NICE refers to it. There is also a transcript for the Pacing video which was put up last week. https://www.dialogues-mecfs.co.uk/films/patients-experiences/

 

https://twitter.com/user/status/1332020566648377345

https://twitter.com/user/status/1332020566648377345

 

The forth of the Patients' Accounts of Symptoms videos - 4. Cognitive Impairment - is now up..https://www.dialogues-mecfs.co.uk/films/patients-experiences/

 

And another two videos uploaded - Sleep Dysfunction and Orthostatic Intolerance. I think teh OI one is worth watching and thinking about in relation to the NICE Draft which doesn't pay much attention to it.
..https://www.dialogues-mecfs.co.uk/films/patients-experiences/

Attached Files:

 

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..

 

Thank you very much for all your efforts with getting these videos out Tom. It was a while before I saw you were posting the first ones separately on twitter with encouraging comments. Thanks.

 

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.

 

I think these videos are terrific. Thank you.

Whoever decided on the music to break up the talking - thank you too. I felt unusually calm watching them.

 

Includes 10 interviewees: Dr Nina Muirhead (Dermatology Surgeon); Anna; John Peters; Joan McParland; Vera Kindlon (Irish ME/CFS Association chairperson and mother of Tom); Lydia; Dr Ben Marsh (paediatrician); Linda; "R"
https://twitter.com/user/status/1335643934622707724