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Transcript: BBC Today Programme March 2019 (clip) An Oxford professor has stopped his work on chronic fatigue syndrome also known as ME because he says he's faced a barrage of online abuse from patients and campaigners. Some context… (slide) Over 80 Charities are opposed to his treatments...

I made a video response to Sharpes interview.

@EspeMor A few suggestions, sorry they may involve considerable effort/cost which I know is in short supply. Just thinking out loud. Some short explainer videos 5 minutes max would really help get the message out. The topic is complicated and difficult to explain especially when people can't...

@dave30th Is there anyway of incorporating the MPs that have signed up to MAIMEs? Over 30 have signed up now. http://drmyhill.co.uk/wiki/Medical_Abuse_In_ME_Sufferers_(MAIMES)

The original link was from Twitter I think. There are links to the public comments at the bottom of the document but I don't think they've been verified as trial participants.

Thanks

It’s a collection of 19 public statements from participants collected for the tribunal in a pdf. There’s too many to post unfortunately.

Is this any use...

Are any of these press releases available?

Thanks for the info Jen. Great to hear about the video content, looking forward to it. I had a look at the groups and wasn’t sure which one to join, is there a general one for creative/digital/marketing? If not would it be possible to create a new one?

Agree we need a slick and coordinated campaign, ME Action are possibly best placed to do this, or a number of skilled volunteers(designers, video production, animation, marketeers, branding, social media, copywriters, health messaging, Etc) Millions Missing shows there’s a lot of talent out...

Gary showed an interest in doing a podcast on twitter. I think a series of podcasts would be a great medium to show the enormity of the problem and theyre quite popular. It’s a lot cheaper to make than a tv documentary, media coverage only ever touches the surface. Could be patient led, no...

This is also a concern

Were there any other major holes in the govt response?

They refused data to Keith Geraghty and 3 of them sat on the cochrane review. They also cited that the authors have published responses to criticism, but were not able/didn’t manage to publish anything meaningful in the PACE special edition JoHP. Can’t remember their reason though.

If original data was stored in MS access then having no expertise is even more ridiculous. Are there any more FOIs planned? Asking for confirmation it’s in MS Access and the DB schema.

Is this any use? details of who was responsible for database design and management Seems to confirm it is a database, and looks like they have a database administration team (see job vacancy below), they should have all appropriate skills in house. My guess is they should be able to copy the...

This is horrendous. I hope Esther Crawley and TV/Radio Dr Phillip Hammond (I think he works there) are both asked for public comment and are made accountable. And I hope Tedx Bristol, Ted Talks, Uni Bristol and NICE are made aware especially after the NICE response to the request to remove the...

Just heard they received a $1 million donation, thanks to everyone who posted. https://pineapplefund.org/

Great to see them engaging with patients. They’re also taking suggestions on their Facebook page. Good shout on the Biobank.