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

Hi @Natalie ... I’m so sorry I didn’t reply to this earlier in December when you tagged me. I’m not sure what happened, I seem to have “liked” some of the posts below that but didn’t realise it was relevant to me ... my head must have been very fuzzy that day or I might have been dealing with doctors. Of course I’m happy for you to use that paragraph in your videos. I haven’t watched the video so I’m not sure if you included it. Anyway, thank you! :)
 
I sent the severe ME films to a friend (without ME) - he has always been very understanding of ME,but doesn’t know a lot about it. he watched all 3 on severe ME and said:

“I saw all the videos and they are really very informative. I feel like all doctors need to see this because they may have to deal with ME patients and actually learn to listen carefully and provide care at the right level. There was Dr Nina Muirhead who's a pateint and a clinician on it. That's great to hear from her and would be great for other doctors to really bring home what all the patients are saying

It's also important for the general public to see and raise awareness. (Lunarainbows), it's such a awful awful way to live . I wish I could give all patients a hug and just wish they don't have to live like that

Are you going to send the videos to the doctors who care for you and the ones who might do your surgery? Cos they REALLY need to see it, especially the last vid

usual hospital wards are just the completely wrong environment. And all that horrendous CBT and graded therapies you had to go through are all wrong”

And He’s going to send them on to two other mutual friends. :)

I also sent the severe ME page on to legal team, As too ill to explain much about situation now. The films explain everything and I’m so glad.
 
Hi @Natalie I was just wondering if you were planning on doing any more films in the Severe / Very Severe ME series? I was just thinking that a film about Care - that is, social care, care needs and care homes, would be just as important as a hospital one.

My biggest fear, even more than going into hospital, is one day being left alone without my mum (and also then if my boyfriend is unable to provide care for me, if he needs to work full or even part time, which is likely), which I know will come one day - although I hope with all my heart that I will be much much better by then. Severe and very severe ME patient’s experiences in care homes are harrowing. Social care is extremely inadequate and harmful and causes deterioration. Our care needs are so so different to the rest of the population - and if we had a video, that could be a really important resource to show to social workers, care workers, those who work in care homes, people who come into the house etc.
 
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lunarainbows said:
Hi @Natalie I was just wondering if you were planning on doing any more films in the Severe / Very Severe ME series? I was just thinking that a film about Care - that is, social care, care needs and care homes, would be just as important as a hospital one.

My biggest fear, even more than going into hospital, is one day being left alone without my mum (and also then if my boyfriend is unable to provide care for me, if he needs to work full or even part time, which is likely), which I know will come one day - although I hope with all my heart that I will be much much better by then. Severe and very severe ME patient’s experiences in care homes are harrowing. Social care is extremely inadequate and harmful and causes deterioration. Our care needs are so so different to the rest of the population - and if we had a video, that could be a really important resource to show to social workers, care workers, those who work in care homes, people who come into the house etc.
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Hi @lunarainbows, I sympathise with that, because I worry about my daughter's future too. But I'm afraid there is no way I can make the Wellcome funding stretch to cover everything we want to cover. There's a wider context for ME/CFS video underway at the moment - just arranging to talk to Mike VanElzakker and then Carol Monaghan - for the start of it. Then if at all possible, later in the year it would seem a good idea to try and edit the 'Diagnosis' footage we already have, in order to highlight changes in the NICE Guidelines - but that will be after we've run out of Wellcome funds and we may need to look for some other help with it.... Then I really will have had enough of doing this for a while and will need to catch up on all the jobs accumulating at home!!
 
Hi, I've lost track of where i should be posting comments about the Dialogues project and requesting help. https://www.dialogues-mecfs.co.uk
I've been working on editing a longer 'wider context' video and have all but one of the contributors' interviews roughly edited.
Soon I'll be working with Josh on finishing it off, but for that stage we need more images.
I've seen someone somewhere put up a list of nasty media coverage of ME and PACE from the last 20-30 years! Please could someone point me towards them?
I also need images relating to the Royal Free and newspaper coverage, other ME epidemics, and Incline Village and media coverage and CDC references to it.
I need images relating to claiming benefits too but I think I can use some paperwork from past claims.
And we could always do with more pics of people who are ill with ME!
We have a short 'Prologue' video which was intended to be used to point people towards the project - to go on youtube as well as the website. However it was doubling as an update on NICE changes, so I have to keep re editing it! I hope we can get it out soon, even if it is only a temporary version. Josh has been inundated in other work and they all seem to get ill rather a lot since having covid, but he has booked in time to work on Dialogues soon, to get the videos finished.
 
Natalie said:
Hi, I've lost track of where i should be posting comments about the Dialogues project and requesting help. https://www.dialogues-mecfs.co.uk
I've been working on editing a longer 'wider context' video and have all but one of the contributors' interviews roughly edited.
Soon I'll be working with Josh on finishing it off, but for that stage we need more images.
I've seen someone somewhere put up a list of nasty media coverage of ME and PACE from the last 20-30 years! Please could someone point me towards them?
I also need images relating to the Royal Free and newspaper coverage, other ME epidemics, and Incline Village and media coverage and CDC references to it.
I need images relating to claiming benefits too but I think I can use some paperwork from past claims.
And we could always do with more pics of people who are ill with ME!
We have a short 'Prologue' video which was intended to be used to point people towards the project - to go on youtube as well as the website. However it was doubling as an update on NICE changes, so I have to keep re editing it! I hope we can get it out soon, even if it is only a temporary version. Josh has been inundated in other work and they all seem to get ill rather a lot since having covid, but he has booked in time to work on Dialogues soon, to get the videos finished.
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I have now shared this on Twitter

and Facebook
Code: 
https://www.facebook.com/TomKindlonMECFS/posts/2046658568815591
 
Natalie said:
I've seen someone somewhere put up a list of nasty media coverage of ME and PACE from the last 20-30 years! Please could someone point me towards them?
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I don't know if I have many but I have a playlist on Youtube with several videos, in case it's useful: https://youtube.com/playlist?list=PL8qTy5IVF1mfRapX_lImGA7sXbu_ttQeS.
I also need images relating to the Royal Free and newspaper coverage, other ME epidemics, and Incline Village and media coverage and CDC references to it.
Click to expand...
Do you mean other than the twitter account posting Royal Free Hospital documents? They seem to have it all, probably in a shareable document somewhere.
 
The last video "The Tangled Story of ME/CFS: Controversy, Denigration and Ignorance" is nearly finished. We just recorded some voice-over sections for it and for the revised Prologue video, and now I can pretty much leave it to Josh to work on the audio quality, as all the content is in place. I so wanted to be able to show it to Graham! it feels such a loss. There are sections with him in it, from when we interviewed him a couple of years ago. I'll send preview links to charities, organisations and relevant individuals next week, in the hope that some of them can help get the release of the video (and the end of the project,) a bit more noticed - rather than just put it up on the website in a rather unobtrusive way. It is over an hour long, in six chapters which can be accessed individually, and it covers a awful lot. I still have to hear back from a couple of contributors, but don't envisage any big changes being necessary. The revised Prologue for Dialogues is now called A dangerous model is abandoned - as NICE seeks to reform care for ME/CFS patients in 2021
 
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