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@lunarainbows , Sorry I'm a bit slow at spotting things... That would be great - perhaps nearer Easter 2021 would be OK.

I just re-noticed the earlier posts about the MEA and Charles Shepherd and wanted to say that we had a very good and long session interviewing Charles last month - with different degrees of input intended for various videos under construction. I've also had some chats with Russel, who I already...

Yes, as Chris Snell pointed out, Aerobic exercise for a person with ME is not aerobic! - "For many ME/CFS patients aerobic exercise is not aerobic, so if you’re using a – for example a 60 % of their peak heart rate, as a measure of aerobic energy expenditure, that’s unlikely to be accurate, so...

Hi @lunarainbows , I now have a better idea of when the event at the LSHTM will be. We can't get the videos all ready for this May's ME Awareness week, but the plan is to hold the event as near to ME Awareness 2021. In the meantime we will get the videos online as soon as each is finished, so...

Not really. I am really stuck with the research side of things and putting it off for now. I recognise bits of Jonathan's paper as similar to something he spoke for a video session about 17 months ago. I've used little bits from it in the GET video. His reservations about the research made me...

Ed Scully seemed astonished that people could die from ME when he was talking to Nina afterwards, at which point I gave him a dvd of Voices and asked him to also look out for the Dialogues project on the Voices website - videos that should be suitable for GPs. I also gave a dvd to Ben Howlett...

I think that when the film came out - 2011 - people really didn't know so much about very, severe ME and the abuse of patients. The film was really shocking, too shocking for people to want to show it much. I certainly had no idea how bad things were before I did the interviews. I didn't chose...

Thank you for taking the time to transcribe the videos. As I mentioned in a post I have transcripts of the videos already, which I try to keep up-to-date was we edit and make changes. I can't check these at the moment - just become a Granny and editing the Introductory video while I have it all...

I'm editing the Introductory video at the moment - starting from scratch again, now I have some more really good material to draw on. The main problem is keeping it short enough! I will probably contact CS again, but for now I am not working on a section where his input would be most useful...

Thanks. Do please do that. I haven't looked at this site for a couple of days as I became a Granny on Sunday night!!!!! Sonya C has told me that she has "circulated [ the GET videos] to all our trustees and staff. I have also included the links to the films in our revised induction plans so...

MEA do not seem interested. I contacted CS about being filmed, a couple of times, but had a very unenthusiastic response - very busy - and I emailed the charity to tell them about the project when I was awarded the funding. I am working with Nina who we have been to film and is in different...

Ah, yes! I remember. Please can you sen me your email address by using the website form, though. It only goes to me. I'd rather email, as I don't generally have time to use this forum much. You can certainly use any videos we have that are finished and suitable for what you want to do. That...

The project as a whole, or most of it, is to be shown on those sites. It is not ready to be put there yet, because it isn't made! - although MERUK may possibly put these GET ones up before too long... I didn't really want the GET videos up without other videos giving a better sense of the...

Thanks @rvallee That is very generous of you and I'm glad you specially like the second part. I do too. It was a substantial award from Wellcome which enables me to pay Josh's standard professional rates as costed in the application. It was calculated for about 10 short videos. I think in fact I...

Can you send me the details of the event/day. I would be very glad for it to be used for the purpose for which is was made. You can contact me through the contact page on the 'Voices' website. Thanks.

Yes, I agree. I've got the video material for a demonstration of doing a CPET in another video. The exercise bike clips are from the demonstration which Jarred did for us and Mark described. However, there are other videos I want to get on with first that seem more urgent - like the 'Severe ME'...

This Wellcome project and funding is for a website with a group of videos and links to supporting material, not for individual videos. We will make the project website when more of the videos are ready. Some of the videos will include a lot of input from patients and our commitment to them is...

I'm sorry I only just realised there was more feedback over the page! Thank you very much. That sounds as though it would be wonderful to have others at the LSHTM helping publicise the event. I'm not sure quite what it will be best to have happen at the School next year. I think it needs to add...

The first two short videos for "Dialogues for a neglected illness " -" Graded Exercise Therapy for ME/CFS" - in two parts - is now available to watch http://voicesfromtheshadowsfilm.co.uk/dialogues-project/ Many thanks to Graham McPhee, John Peters and Tom Kindlon for help with sorting out...

I think I should run it past Caroline first as she is selecting and contacting patients for the project. Thanks Linda.