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

Trish said:
Thanks for the update, @Natalie. You should be very proud of your achievement with this whole project.
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Thanks Trish. I shall feel happier when I get to the end of the Wellcome form and can get the final money to pay Josh for his work on the last film! There are some difficult questions like listing the key findings from an evaluation of the project - including impact/benefit to the audience involved in the project..and to the team members including the researchers/scientific experts involved..and or the area of scientific research!
 
Snowdrop said:
It really is a good video. It was quite poignant to see Graham in the film and photos of Bob and Alem.

And I apologise how this might sound, I have little tether ATM and this is important to me so while seeing the video is all well and good and it is well done I would like very much for us to have information shared that would make it even better (in terms of being hopeful about it's impact) -- like what are the plans for getting this video into the hands of people who don't know what we know and how might we be able to help (for those of us on social media)?. I'm sure it will play just as well in countries outside the UK.

Anybody know the plan? Unless it gets press and lots of people watching (and some of those people being in a position to help) . . .

I'm sure this has been addressed and thought through I'm just saying that us knowing what the plan is could be useful and or encouraging.
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I'm afraid that how much it gets seen is entirely up to others. I have worked flat out on this project for the last four years, including working completely unpaid on the Tangled Story for the last year, to save the remaining funding for paying for the final professional editing work to turn it into a good quality film (under covid conditions).

As a carer for a very vulnerable and generally housebound ME patient, needing a lot of help for the last 30 plus years, I have a lot to do to catch up on everything I haven't managed to do over the last 4 years. My family needs me now.... and I can't manage much more ME advocacy at the moment. The project has been hosted or linked to by major Uk charities and is referenced by many websites around the world, as well as being referenced in education and training materials for students and doctors.

There are some people who share it with other significant people, and many who regularly try to get it noticed via twitter where it has been particularly noticed by physio groups and Long Covid patients, many of whom are medical professionals.

So I think it will get noticed more and more. It has actually reached a much bigger audience than I originally envisaged when planning the project. I have been preparing the subtitles for the Tangled Story, but Josh has too much work on over the next few weeks to be able to add them, in any vanishingly small amount of free time he might have with a small child to look after and both parents working.

He will add them when things cool down again. So it is up to charities and patients to share the video and the project as best they can. I can't do more than I am doing. I actually find what I need to consider now, the future for our daughter, extremely stressful to the point of being almost impossible to face!
 
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Natalie said:
I can't do more than I am doing. I actually find what I need to consider now, the future for our daughter, extremely stressful to the point of being almost impossible to face!
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Natalie, you're a super hero who has achieved so much. Thank you from the bottom of my heart. I also feel for you as I'm also the parent of a daughter with decades of severe ME. Take care of yourself too. :heart:
 
@Natalie you have done the 'fair share' of several thousand people with this project. I am profoundly grateful to you, particularly because of all you and your family have sacrificed to produce all the vids. They are an outstanding resource and it is wonderful to be able to direct people to the site, it's so professional and credible to refer anyone to, regardless of who they are.

Like so many people who have worked so hard & sacrificed so much, we owe you a huge debt :heart:
And in the years to come, when we are in a different position, as the balance changes in favour of truth, it will be thanks to people like you.

I hope for peace for you as you turn your attention to your family.
 
Trish said:
Natalie, you're a super hero who has achieved so much. Thank you from the bottom of my heart. I also feel for you as I'm also the parent of a daughter with decades of severe ME. Take care of yourself too. :heart:
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Thank you very much, to all of you.. My family usually sighs a sigh of relief when we get to the end of February, but this year there is not much to be relieved about in the world at the moment, and it makes our daughters' futures all the more perilous.
 
Natalie said:
I'm afraid that how much it gets seen is entirely up to others. I have worked flat out on this project for the last four years, including working completely unpaid on the Tangled Story for the last year, to save the remaining funding for paying for the final professional editing work to turn it into a good quality film (under covid conditions).

As a carer for a very vulnerable and generally housebound ME patient, needing a lot of help for the last 30 plus years, I have a lot to do to catch up on everything I haven't managed to do over the last 4 years. My family needs me now.... and I can't manage much more ME advocacy at the moment. The project has been hosted or linked to by major Uk charities and is referenced by many websites around the world, as well as being referenced in education and training materials for students and doctors.

There are some people who share it with other significant people, and many who regularly try to get it noticed via twitter where it has been particularly noticed by physio groups and Long Covid patients, many of whom are medical professionals.

So I think it will get noticed more and more. It has actually reached a much bigger audience than I originally envisaged when planning the project. I have been preparing the subtitles for the Tangled Story, but Josh has too much work on over the next few weeks to be able to add them, in any vanishingly small amount of free time he might have with a small child to look after and both parents working.

He will add them when things cool down again. So it is up to charities and patients to share the video and the project as best they can. I can't do more than I am doing. I actually find what I need to consider now, the future for our daughter, extremely stressful to the point of being almost impossible to face!
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Ah Natalie, that's me too.......
Life with it's twists and turns is almost impossible atm.

I am not sure how old your daughter is but my son is approaching his 38 year..... and has been unwell all his teenage and adult life.

I find I need time to be less 'busy'- often done as a distraction to avoid the inevitable grieving process we all feel for trying to cope with the sense of the lives lost, for the quality of lives lost and for the sheer iniquity of it all.
So thank you for your exceptional efforts. It has been really appreciated.
x
 
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Natalie said:
I can't do more than I am doing. I actually find what I need to consider now, the future for our daughter, extremely stressful to the point of being almost impossible to face!
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Try to make some time for yourself too @Natalie ?
My heart goes out to all of you in the same situation, ensuring that your offspring continue to be kept safe & well away from COVID-19. Best wishes x
 
My cognitive fatigability, including from watching videos, has worsened so haven't watched the 'Dialogues' yet but look forward to reading the transcripts when they will be available.

I'm sure the 'Dialogues' are a very valuable source, though, and would like to add my thanks to Natalie.

Ten years ago, when I gave a presentation on my voluntary work at that time to a group of students in the scholarship program I attended, I included the "Voices from the Shadows" film trailer. We all were involved in different voluntary work and we had talked about our involvement before.

The feedback I received after the presentation was clear. The film trailer made a difference. I remember especially one attendee saying: 'Only after having seen the film trailer I realized what this disease is about.'
 
MSEsperanza said:
My cognitive fatigability, including from watching videos, has worsened so haven't watched the 'Dialogues' yet but look forward to reading the transcripts when they will be available.

I'm sure the 'Dialogues' are a very valuable source, though, and would like to add my thanks to Natalie.

Ten years ago, when I gave a presentation on my voluntary work at that time to a group of students in the scholarship program I attended, I included the "Voices from the Shadows" film trailer. We all were involved in different voluntary work and we had talked about our involvement before.

The feedback I received after the presentation was clear. The film trailer made a difference. I remember especially one attendee saying: 'Only after having seen the film trailer I realized what this disease is about.'
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That is great to hear that the trailer for Voices made such an impact. There are transcripts for some of the Dialogues videos already up: The Prologue, two PEM ones and Activity Management/Pacing. There are links or download buttons under the videos. I will prepare others at some point... especially the Severe ME ones. I have the subtitles/ close captions for The Tangled Story prepared, but Josh has too much other work on to add them for the moment. He does all the website work. I don't have a clue about how to do it!
 
A link to the Dialogues website was provided to the PSP facilitators, who were new to ME, as background information on the disease. I will ask them re whether they've looked at them after the last workshop.

One of the Patient Advisory Group members also joined a preparatory meeting and was able to explain the cognitive issues and how to be more inclusive. I was also there and provided some input on background to some of the questions raised etc

ETA: PSP
 
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https://meassociation.org.uk/2022/08/howes-goudsmit-prize-awarded-natalie-boulton-josh-biggs/ The ME Association announces they have awarded me and Josh the Howes Goudsmit prize for our work on Severe/Very Severe ME/CFS. I'm sad that Graham has missed this, as he gave me a lot of help and encouragement. I started the Hospital Admissions video from scratch three times over as he and Rob were not happy with the first two attempts! I can't use Rob's surname as his son didn't want to be identifiable. I'd only intended to make one short Severe ME video... but as usual, they grew! I recorded a bit for MEA on my laptop, as it gave me a chance to say a bit more about what particularly concerns me now. There are two sections with me speaking in their video.
 
Natalie said:
https://meassociation.org.uk/2022/08/howes-goudsmit-prize-awarded-natalie-boulton-josh-biggs/ The ME Association announces they have awarded me and Josh the Howes Goudsmit prize for our work on Severe/Very Severe ME/CFS. I'm sad that Graham has missed this, as he gave me a lot of help and encouragement. I started the Hospital Admissions video from scratch three times over as he and Rob were not happy with the first two attempts! I can't use Rob's surname as his son didn't want to be identifiable. I'd only intended to make one short Severe ME video... but as usual, they grew! I recorded a bit for MEA on my laptop, as it gave me a chance to say a bit more about what particularly concerns me now. There are two sections with me speaking in their video.
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Now Natalie... , have a well earned rest, respite and a little 'me' (not ME) time!?
 
Natalie said:
https://meassociation.org.uk/2022/08/howes-goudsmit-prize-awarded-natalie-boulton-josh-biggs/ The ME Association announces they have awarded me and Josh the Howes Goudsmit prize for our work on Severe/Very Severe ME/CFS. I'm sad that Graham has missed this, as he gave me a lot of help and encouragement. I started the Hospital Admissions video from scratch three times over as he and Rob were not happy with the first two attempts! I can't use Rob's surname as his son didn't want to be identifiable. I'd only intended to make one short Severe ME video... but as usual, they grew! I recorded a bit for MEA on my laptop, as it gave me a chance to say a bit more about what particularly concerns me now. There are two sections with me speaking in their video.
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Thank you Natalie and Josh for what you have done. So much appreciated. X
 
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