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Transcript ME is the biggest cause of long-term sickness absence in schools (51%). Survey of over 330,000 pupils. Dowsett, Colby 1997. (Slide) 1 in 5 parents of children with ME are threatened with child protection proceedings. Action for ME Survey 2017. (Slide) Stephen Pound MP, Ealing...

ME is the biggest cause of long term sickness absence in schools [1]. 1 in 5 parents face child protection proceedings [2]. ME is not taught in medical schools and 80% of doctors think its psychosomatic [3]. Because healthcare professionals don't understand ME they start blaming the parents. ME...

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...

Forgot to ask, does this mean all the data has been released now?

Excellent!

Thanks Andy!

Thanks, I was trying to convey how long people have been asking for action with a bit of humour, and the age of the clip kind of says that but see what you mean. Ive already shared it, but will bare it in mind for next time There are links charities in the youtube description to get involved...

Thanks. Agreed, the video was aimed at non ME people, I'm not sure the best way to get it out there, I've emailed a few charities and I'm going to share it round a few groups, I hope that if pwme share it, their friends might watch it. Other options are targeting people with large profiles who...

Ive just emailed a few of the charities. Hopefully they will share it.

Transcript ME has a lower quality of life than HIV/AIDS, Stroke, Parkinsons, Multiple Sclerosis (slide) ME patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” ~ Prof. Mark...

ME is one of the most misunderstood diseases. 1 in 5 parents face child protection proceedings, patients have been sectioned and abused, NHS treatments make over 50% of patients worse, biomedical research has been pitiful. A global health scandal that has been ignored for over 30 years. ME has...

I rejigged the ending from 4.00 mins onwards. Still need to think about how to handle new versions.

Does the 18.9% serious adverse events in the placebo group suggest that adverse events in PACE were not properly recorded?

Thanks that makes sense. I know which clip youre referring too. Unfortunately I can't edit the video and keep the URL. I will have a think about uploading a new version. I was unsure of that whole section tbh and considered cutting it out along with his interview at the start as a more general...

@JoanNI Id be happy to edit the video if you want anything specific, sadly I don’t think the quality would be good enough for TV though.

It's a tricky one, producing a TV quality video would likely need a 3rd party and would be expensive and the cost would need to be factored in. Personally I think the money maybe better spent on a PR consultant to come up with an overall strategy across multiple channels. It's such a complex...

Sure I’d be happy for you to use it. Im not 100% but shouldn’t think it’s a problem to show during a conference.

First clip was from ME and me bbc doc. The rest are from parliamentary debates and a petition meeting in Scotland. I don't think there are copyright issues on parliamentary clips, maybe the BBC doc but they don't seem to enforce much. Also I'm how not sure if copyright applies to legitimate...

I think Facebook, YouTube or Twitter ads would be better than TV because you can have additional links and actions. Might be able to get more visibility if people with high profile, or large following to share. It also might be worth tailoring the vid to focus less on Sharpe so it's a bit more...

YouTube description Michael Sharpe was an author of the controversial PACE Trial that has been widely discredited. On 17 March 2019 he was interviewed on the BBC Today Show about the claim he was leaving the field because of online harrasment, this video provides some wider context, including...