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

Natalie said:
We've just put up the third Severe ME/CFS video: Hospital Admissions, Issues and alternatives for severely ill ME/CFS patients. https://www.dialogues-mecfs.co.uk/films/severeme/ Although I made a twitter account for the project it was suspended before I tried to use it and although I have asked asked repeatedly to have it unsuspended it hasn't happened, so I would be glad if people .. @Tom Kindlon? publicise it - maybe after this evening as Josh is still doing a bit of tidying up on the website. Thanks to people who have helped with photos and especially to @Graham, who kept me at it long after I would happily have given up! It was worth it in the end though.
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I've scheduled a Facebook post and Tweet from the S4ME accounts for 9am tomorrow.
 
Natalie said:
We've just put up the third Severe ME/CFS video: Hospital Admissions, Issues and alternatives for severely ill ME/CFS patients. https://www.dialogues-mecfs.co.uk/films/severeme/ Although I made a twitter account for the project it was suspended before I tried to use it and although I have asked asked repeatedly to have it unsuspended it hasn't happened, so I would be glad if people .. @Tom Kindlon? publicise it - maybe after this evening as Josh is still doing a bit of tidying up on the website. Thanks to people who have helped with photos and especially to @Graham, who kept me at it long after I would happily have given up! It was worth it in the end though.
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Thanks very much for this, Natalie and Josh.

I have now shared it to some of my social media accounts:



https://www.pinterest.ie/pin/174584923043833071

and some mailing lists
 
Carrots are not a success story in my household. I planted three rows of them, shortly before my excursions into exotic parts (the local hospital). The slugs ate every last trace of them, apart from one which landed inside a protective collar that I use for my runner beans.

On a previous occasion, I planted two rows of parsnips, and they grew. Something was wrong with the seeds though, and they turned out to be more like the sort of beet that you feed to cattle.
 
We've just made a few minor corrections to the Severe ME videos and added a postscript to the Hospital one - an idea mentioned to me recently, which I thought could do with a bit of an airing...Screenshot 2020-07-29 at 17.44.00.png
 

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Andy said:
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Just shared this GET page on FB. Two extremely good videos. As well as @Jonathan Edwards and @Brian Hughes, several other excellent contributors too. Especially pleased to see the contribution by Professor Mark VanNess, a Co Chair of Health, Exercise and Sport Sciences, who explains why the treatment of ME/CFS patients runs counter intuitive for most health professionals, but needs to be understood by them.
 
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Patients' experience

This collection of videos illustrates key symptoms of ME/CFS: important when making a diagnosis. Patients describe these symptoms themselves. They had been ill for between two to thirty five years when interviewed and their age at onset ranged from ten years to middle age. The interviews give an idea of both the range and consistency of key symptoms.

The videos provide a body of first-hand evidence. They can be just started, or dipped into, to get a ‘taste’ of the disease. They help recognition of the distinctive qualities of the symptoms in ME/CFS. Some supplementary information relevant to diagnosis is also included.

The films are: "Reduced Function" (Duration 19 minutes)
and "How does the disease start?" (Duration 27 minutes)

https://www.dialogues-mecfs.co.uk/films/patients-experiences/
 
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.
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Thanks @Kalliope. I'm really glad to have these up and the next ones nearly ready. I'm hoping they make quite a substantial body of evidence as a whole. Yes, it is always shocking to have it brought home how ill people have been for so long, and how in so many cases, it needn't have been like this!
 
Thank you so much for your work on this, @Natalie. And thanks to all the people, including some familiar names and faces, who participated. So many damaged lives. I hope these videos get a wide audience. They would be good to show to doctors and other health and care workers, and to friends and family members.
 
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