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It is DecodeME yes, with Prof Chris Ponting being interviewed.

Unfortunately it's much less powerful, and can't dim phone screens nearly as much as Twilight can on Android, but still worth using if you have an iPhone.

I have found the Twilight app on Android to be hugely helpful for managing dimming. This is not available on iPhones. Twilight allows you to make the screen extremely dim, and take's out most of the blue light, which has allowed me to use it even in a darkened room when I have been more...

Could someone DM me the full PDF too please? Thanks! (Edit: received thank you)

Hey @NelliePledge - always okay to tag me :) Sheffield ME and Fibromyalgia Group will be asking Sheffield Healthwatch to share with other Healthwatch groups and the national team. Sounds like a great idea to approach your local healthwatch and ICB with the results. I'm sure the Sheffield team...

All stuff we're working on

Heya @Milo - the team is just finalising some things to try and make the most out of the launch so that it creates some real waves - hopefully shouldn't be too long!

Final call for applications. Deadline is midday tomorrow (Tuesday 11th Jan). psp-me.co.uk/take-part

I'll add it there, makes sense to be in both places tbh!

There's a button just above the survey that allows you to do this! Here's the direct link to PDF of questions. https://www.psp-me.co.uk/wp-content/uploads/2021/10/The-Long-List-of-ME-CFS-Research-Questions-MECFS-PSP.pdf Let me know if you were looking on another page and I'll update the...

Yeah I think we're in a weird situation. I doubt most illnesses have to counter the crap research we've been subjected to, and the James Lind Alliance process is set up to be replicable in many different disease areas. If we wanted to put out a charter of what our community defines as...

On a more personal note - really looking forward to seeing the discussion of these questions here. There are a couple I will definitely choose for my top ten, but don't have all sorted in my head by a long way yet. Realise they are in the plainest English we could manage, which may seem overly...

Survey now live! Take part here: https://www.psp-me.co.uk/take-part/ Three ways to take part: Online: Visit the website to take the survey now: psp-me.co.uk/take-part Paper: If you can’t participate online, we’ll send you a paper survey. Phone or write to us with your name and address...

Next survey launching this coming Monday 25th Oct.

Hmm yeah not sure if "Title and operational definition" means that is the actual language they use in the instrument or another title they've created for each point..

Can anyone find the actual list of questions for the final instrument? Can't tell if I'm just brain fog failing to find or if they've chosen to withhold?

Yes, petition has been sent to the ones we have contact with. And I did chat to Mark before we launched this petition, he's an excellent advocate and all round great guy and was happy to support both petitions.

Checking with our social team - probs easier to contact on twitter but if they can't will email. And yes I'll contact Sten.

Have done already :) Good suggestion though, they're a great org. Any more ideas feel free to tag me and will send more emails!

Aimed more at individuals but if you want to sign as an org more than happy for you to put in the organisations name and if so I'd email uk@meaction.net to let us know - doubt we're gonna manage to comb through all signatures to find the orgs.