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

Hi, this is Lunarainbow’s mum. She’s still not feeling well enough to type. She has dictated into the voice to text app and I’m editing:

Thank you so much for doing this today. It gives me so much hope things are changing for the better.

The videos are really wonderful and very professionally done and with so much thought and knowledge in them.

@Natalie I just wanted to say that my boyfriend works at the London School of hygiene and tropical medicine's library and he knows quite a lot about severe ME because he is also my carer. I was thinking that when the School of hygiene and tropical medicine is ready to host a screening of the film, maybe my boyfriend would be able to work with his supervisors and the others in the library to put up some posters or to just spread the word and bring more publicity to ME around that time. I am sure he would want to help. When I told him about the Cure ME Biobank, surprisingly he had not heard of it at all and I don't think that other people in his team have as well.

So I think this would also be a good opportunity because I know that quite a lot of academics and students visit the library often. I thought this might be a good way to raise awareness of ME as well and get more people to attend the screening. If you think this is a good idea please let me know.

 

This is wonderful. Just watched one video so far, I usually struggle but I can manage the odd 10 minutes. It was wonderful, moving as well and it will be such a useful resource. After Simon Wessely at LSTMH last week or so, this is a lovely alternative. Thanks to all involved.

 

Will watch later. Looking good!

But it would be a good idea to publish on Youtube as well. It sucks that this one platform is a near monopoly but it would increase the chances of being viewed and shared. So whomever has the rights to those videos, please consider.

 

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 something to the videos that will be already available online. There will be a longer video looking at various aspects contributing to the wider context for ME and that will probably be the best one to screen and the last to make. I hope to also have a talk and discussion and am looking to see who might be able to provide input not normally available here, and which will add to the collection of videos. Do please get in contact in year or a bit less to see what is planned and how you could help. Thank you very much.

 

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 that the videos will all remain together as a project. They are not to be copied and distributed separately or in sections. There aren't many patients who are willing to have their accounts made public online. I very, very much appreciate their input and want to take as much care as I can to make sure both that no individual is over-exposed in the videos and that their contributions are not hacked and abused, as happens all too easily on youtube.

 

Excellent videos. Thanks so much to all who contributed.

Starting the video on GET with saying that of course no doctor wants to harm their patients is a masterstroke. Subtext: we're all on the same page. Warm fuzzies. Nobody's prior knowledge that exercise is helpful in many conditions is questioned. More positive affirmation. And then they slip in a little exception to the rule. And repeat it over and over, from different angles, so many times it surely must stick: in ME aerobic activity causes harm; in ME aerobic activity causes harm; in ME aerobic activity causes harm; in ME ...

 

Not just aerobic activity surely.

 

Merged thread
I saw this on Tom Kindlon's twitter page. The people who have made the documentary Voices from the Shadows are now working on another project called "Dialogues for a Neglected Illness"

They have released two short video's: Understanding Graded Exercise Therapy for ME/CFS. Part One and part Two.
http://voicesfromtheshadowsfilm.co.uk/dialogues-project/

The first part interviews researchers of the Workwell foundation, the second part interviews Brian Hughes and Jonathan Edwards on the PACE trial.

I've watched both video's and they seem professional and useful.

 

I'm not sure if the theory of the researchers of the Workwell Foundation on the aerobic energy system being damaged in ME/CFS is correct, but I think it's still useful to document their perspective given how different it is from how European researchers tend to approach the illness.

The second interview is also very useful for explaining the problems with the PACE-trial. Just two smart scientists, calmly explaining the issues with the trial.

I personally think the instructions given by GET/CBT on how patients should interpret symptoms in a more benign and optimistic way, played an important role in explaining the small improvements seen on subjective outcomes. Brian Hughes explained this quite clearly when he said:

Edwards said:

PS: This is also the first time I saw Jonathan Edwards on video! You remind me a bit of Hugh Laurie, very British. I can very much imagine you taking tea breaks with Leibniz biscuits.

 

Merged

Voices from the Shadows are producing a series of videos supported by an award from the Wellcome Public Engagement Fund 2018-2021.

The first two have been posted on their site already. (There are more on the way.)

Understanding Graded Exercise Therapy for ME/CFS. Part One.

Understanding Graded Exercise Therapy for ME/CFS. Part Two: The PACE Trial

The series will be made available on other websites: Cure ME at the London School of Hygiene and Tropical Medicine and the ME Research UK website.

Here's a link to their page:
http://voicesfromtheshadowsfilm.co.uk/dialogues-project/

 

Putting out HQ educational material to counter the rubbish from the other side is a good idea. Getting a welcome grant for it is great. The video I watched was short but very to the point.

I’m surprised there hasn’t been more interest in replicating the workwell foundation research or more hasn’t been done to do so in the UK. I used to think it was because it wasn’t done here but then we have had threads where certain individuals on this forum have been able to arrange personal tests for their own use/interest at UK universities. Someone, a researcher, from New Zealand the other day said on Facebook that she was involved in lots of CFS CPET studies over there but I think that getting This type research done over here to counteract the push to exercise pwCFS within physio circles etc would be really helpful.

 

The videos were truly excellent. Many thanks to everyone involved, this is professional work and very relevant. The PACE dementors must be seething with impotent rage.

The first video was good, but the second was GREAT. Superb summary, clear and concise, and perfectly laying out the massive flaws in not only PACE itself but the Cochrane review, harking back to the broader context of loose standards responsible for the crisis of replication and confirmation bias bubbles.

It's truly absurd how blatant and self-evident the facts are and to still have people insist that it is perfect and all criticism of it is invalid sour grapes. I don't understand how such an important institution as medical research can be so derailed by a blatant mix of deceit and incompetence. It reveals massive blind spots at the heart of medicine, so easily led astray by a small bubble of ideologues whose primary skills are marketing and manipulative politics.

I noticed on the page that it says many more videos are coming. Looking forward to seeing more, this is excellent production, editing and the substance is easy to grasp for anyone unfamiliar with it. IIRC the funding came from a grant. I would gladly chip in some money if it means either more videos or publishing them to a wider audience.

 

I too am delighted to have these short sharp and snappy.... pithy too!

Will suggest that Suffolk GP 'Down Day' and Training consider applying for use of them to be shown.
Natalie, can you let us know how we may arrange that?

 

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' videos and the 'Introduction to ME/CFS'.

 

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.

 

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 stretch it to make more, including a longer 'Context' video, which I am looking forward to! I am unable to accept donations towards the project by Wellcome's conditions - so it remains a project wholly funded by them, but we can put in as much work as we feel able to.... I would be glad of help with publicising the videos, making use of them and also helping to get people to the event to be held at the LSHTM next autumn, which they will organise. It will take a little while to get a new website made for the videos and other material. I feel the priority at the moment is just to get on with filming patients for the symptoms videos and editing the Severe ME videos and the Introductory video.... as fast as possible. I will need to collect feedback on the project and evidence of it reaching people and being useful - to comply with the award requirements and be able to receive the final proportion of the award!

 

Thank you for tagging us - thanks to others on this forum we have just been sent these. I have just looked at the first one which is fab - off to watch the next one now. I have shared with the others

 

I have just forwarded the link to my eldest daughter for her to forward on to her friend who us currently training to be a GP.

@Adam pwme ' s paediatric video shocked her.

Just the right length and detail to engage with. Hopefully a better informed new generation of medics is feasible.

 

That particular video is about the potential harms of GET. GET is about increasing aerobic activity. So the video focuses on the harmful effects of aerobic activity.

You're right of course that aerobic activity isn't the only thing that causes trouble in ME but I expect some of the future videos will address this. For example, sensory overload would fit in with the proposed video on severe patients and cognitive exertion with a PEM video - of course I've no idea what exactly the producers are planning, just saying they are planning to cover other aspects of ME, and based on the first two examples of their work I'm confident they'll do so very well.