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

I've scheduled a Facebook post and Tweet from the S4ME accounts for 9am tomorrow.

 

Well done @Natalie ! And I accept the new label, Graham – slave driver, with my usual modesty and charm.

 

Thanks very much for this, Natalie and Josh.

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

https://twitter.com/user/status/1286450076135694338


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

and some mailing lists

 

Thanks Tom. I've got an instagram account for it and will post on that too, later.

 

I'll tweet nurses in N Ireland.

 

https://twitter.com/user/status/1286571823174426624

 

And Charles S says he will pass on the link to the NICE severe ME/CFS subgroup he's working with....

 

Actually, it is not the whip I see in your hand, but the shiny fresh carrot, which you keep shifting a little further away as I get closer!

 

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...

 

https://twitter.com/user/status/1296708174309920768

 

https://twitter.com/user/status/1297081069385199616

 

This turned into a unplanned thread.
https://twitter.com/user/status/1297443458538303488

 

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.

 

https://twitter.com/user/status/1297805850615193608

 

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/

 

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.

 

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!

 

Natalie and team are now also on Twitter

Code:

https://twitter.com/DialoguesMECFS/status/1324984812646649857

https://twitter.com/user/status/1324984812646649857