Request for help with possible TV documentary on ME

I wouldn't be sure how to link the Millions Missing into a documentary on poor research around ME and CFS. It would start off with some footage from a demo and then head into another area unless the part of the Missing Millions demo directly addresses research?

That said, your friend will know that the first few minutes will need to hook the viewers in and get them watching the rest of it. They should be able to find something visual around ME to do this and still pull it all together. There may be something out there already.

 

you could use #MM to illustrate the false narrative of 'a small vocal group' being opposed to the highjacking of the disease by psychiatry and subsequent dodgy research (eg PACE).
A South African news team (Carte Blanche) did a good sum up of the situation a couple of years ago

although please don't use 'chronic fatigue'.

 

The top item on the flyers handed out at the Millions Missing events, under

"WE DEMAND THE FOLLOWING (is)

Parity of resesearch funding:
The government must urgently invest in biomedical research after years of neglecting people with ME. Funding of research must reflect the severity of ME and its prevalence in the UK."

Could @chicaguapa or @Gecko maybe upload the whole flyer sometime for info - maybe under the MM 2019 thread, thank you from tech illiterate oldie.

 

Other good people to interview. Dr Nina Muirhead and Dr Nigel Speight.

Countrygirl from PR has extensive info on youngsters being threatened in South West and has herself been ignored at A and E for serious heart problems because of her ME diagnosis.

@Gary Burgess who has done the ME show, would also be a good person to get in touch with.

Friend may want to be in contact with Invest in ME research whose annual International Research Conference in London happens on 31 May.

There were a couple of people filming/doing interviews at the London MILLIONSMISSING event who may be happy to take some footage interviewing speakers there if that's of interest...

 

Many of the posters at these events echo the "we need more biomedical research" message

 

First of all, you have to decide upon your theme and the target audience, or the workload will overwhelm you! Even then, trying to pull everything together is really difficult. I try to keep my videos short, and it's a terrible task dumping all the good stuff just because there isn't room for it all.

 

Thanks again everyone. It's all good stuff.

 

Here's the playlist with videos I used for the two posted earlier in thread with a few more.

https://www.youtube.com/playlist?list=PLlwajdBpPc4vOHykt4Ma8YXsQyK2A792e

If they are after anything specific I can try and point them to specific videos.

As for the documentary its so hard because there is so much, here's my 2 cents...

I think it's important to show the crashing side of me and thats what makes it unique and so disabling.

Hannah did a great video diary which shows what happens and how long it takes to get back to baseline. I think some visuals would help people to understand, like a battery icon charge %, lists of symptoms etc or better still some animation. A calendar with days being scratched off would be good to illustrate time passing.

https://www.youtube.com/watch?v=lnAzwtw7gS0

The unrest educational vid has a good section on PEM/crashing too.

https://www.youtube.com/watch?v=RC9TjgE_PlU

And this is why patients and experts are so opposed to Graded exercise. It just doesn't make sense, you can't keep pushing past your limits and ignoring symptoms.

some interviews with patients harmed by Graded exercise would be good too, like Emma in my videos.

And research problems, an interview with Keith Geraghty, Tom kindlon et al, the most shocking and easiest to understand things would be preferable, the steering minutes saying that the actometers were dropped because a Dutch study had null results. Dropping the recovery threshold so you can be classed as recovered at the start. Exagerated claims of harassment in the tribunal would be good to include too if possible.

Ps. Well done on getting your friend interested its great to hear.

 

Thanks for the tag. Our global demand this year was very specifically more research funding, so every single one of the 90+ cities and many more virtual actions were asking for this.

The toolkit for #MillionsMissing 2019 is here, and includes everything from the leaflets (UK, US and Global) to posters specific to countries across the world, to press releases and more.
Check it out: https://drive.google.com/drive/folders/1RiMkTOtmET_rT_NSC41sBKgcp5m6W1_O

2 of our new UK posters this year focused on research funding, as did our leaflet. I'll attach them as images but they're in the above folder as PDFs.


It's great you've got someone with such experience engaged @Lidia Thompson!

We definitely have professional quality footage from events in Sheffield, Glasgow and London, as well as other places that we could look at sharing with your friend. We'd need you or them to get in touch on uk@meaction.net
And, capacity allowing, could also be interested in working with yourself and this film maker to produce something high quality if they'd like the support of an international organisation. So please do reach out to the above email address.

 

I would pitch for a short series, with each episode focusing on one aspect of ME; eg. daily life, lack of research, wrong treatments leading to deterioration, children and threat of FII and school attendance.

 

There was a thread about this, i remember posting in it but don't have the link handy.
I would also support much more media being created but we don't have the energy, cognitive functioning or money to sustain such an endeavour.
If we could find a way i'm all for it.

 

Hi again everyone.
I have just been interviewed by a journalist/producer. It look like a documentary on ME is looking possible after all.

Some questions from her:
1. Do you know of anyone who has not spoken publically about their experience with ME before who has been recommended GET as a treatment?
2. In terms of key people who are speaking out against the PACE Trial but aren't being listened to, who would you say are the most prominent voices?
3. Are there any members of the NICE Guidelines review panel who are also authors of the original PACE Trial?

Help with the answers to these questions would be most welcome.

 

1. I often see people commenting on this on forums, social media but have no specific recommendation.
2: While he can seem embarrassed at being the default choice and often point to others who have done a lot of valuable work, I think Tom Kindlon is the best example of a patient who has been raising concerns about PACE trial problems. David Tuller was obviously central in getting patient concerns listened to by a wider group of people. I think Carolyn Wilshire's papers are the best academic work published on PACE.
3. Yes, Gabrielle Murphy. https://www.nice.org.uk/guidance/gid-ng10091/documents/committee-member-list-3

 

Thank you for your answer.

Yes I think the article you have suggested is excellent and is one of the ones I gave her to read in order for her to be able to put everything in context.

 

Thanks for the response. I think it makes good sense.

And I KNEW there was someone who was involved with the PACE Trial who was also on the panel for the NICE guidelines, but the name had escaped me! So thanks.

 

@Gecko can you think of anyone who has followed GET and got worse, who hasn't yet told their story?

 

@Lidia Thompson, I'm a lay member on the committee.

After December, I'll no longer be under NDA and could discuss the process with your friend, if that would help?

It might be useful to get an insider view on the thought processes that have gone into the guideline, why people wanted a new guideline, and what the experience was like for lay members.

As a fellow writer/journalist, I have experience with TV also.

 

Would you be up for a video Q&A on the subject once you are free of the NDA as well? Being involved in the GWAS is going to limit the number of Q&As that I will be doing for a while but I think it would be really good to do this one if possible.

Sorry to hijack your thread Lidia.

 

Jen's focus is now very much on CCI.