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Thanks for your feedback @Andy and @Trish !! Taken into account. With regards to Unrest feeling "very American" I do think that the film helped (and continues to do) a lot back in the UK and remains a great learning resource. That paired with UK experts plus David Tuller in the panel, should be...

Thanks Nellie! We are updating all our databases and working on next steps to lobby MPs and engage the community and local advocates. As has been said before, there are key points we need to take into account, including the upcoming NICE guidelines, funding from MRC/NIHR -GWAS study hopefully...

Huge congratulations to Evelien and Francis, this is a huge achievement. Evelien, your speech was amazing and the committee's response is at least hopeful! Thank you for representing people with ME in the EU and your hard work on this over so many months. Thank you so much, Tom and Michiel for...

Yes, exactly as @Gecko said. Thank you all!

Thank you ALL for the support, encouragement, organising, volunteering and everything in between in the lead-up and during #MillionsMissing and the support S4ME has given to this campaign <3 We have had soooo many demos and amazing protests across the UK, a record number (over 30!) this year...

Appreciate all comments and the discussion here. As @Andy put it, we are "giving a platform for anybody with ME to tell their unique individual story". We are a patient-led, grassroots organisation and as such, we try to give a voice to everyone. If you have any ideas re content, we are open to...

That would be good and something I think Tymes Trust can help us all with.

Quite right. Our latest info clearly states that recovery is rare, in the context of all pwME. See more here and here

If you liked our article, please send big thanks to Adriane Tillman and @JaimeS l!!

NO worries at all Trish, I didn't take as a criticism :) No coordinated plans behind the scenes as of now, I am afraid. Have a good weekend and thank YOU!

Hi Trish! Noted, we are working, very very hard, on additional things. As a patient network organisation, we would welcome anyone that wants to volunteer with us to change all of these damaging strategies. We are: 1 staff person in the UK and a few volunteers, most fellow pwME, so you can...

OH I wish Adam but we don't simply have the capacity. We look like we have 20 people on staff but it's not like that :S But thanks for the input, it's really valuable!!

Hi! Yup, I am the UK Coordinator for #MEAction. The rest of the team in the UK is volunteer-based :) We are doing the best we can and we have been sending letters to every single outlet that's picked up the story (our original article needs to be updated to reflect all that we have done, but...

Noted @Sly Saint ! Though if I'm not mistaken Mental Health awareness week is a week before ME awareness week. That does not mean that the press will care about this difference though, so will take that into account!

Thanks so much Andy!! <3 Better, bigger and with the focus in the UK & Scotland on increasing funding on biomedical research! Please do join us or email uk@meaction.net if you have any questions ;)

Hi there Hi there @obeat! We are working on this, will have some news in the next few months, hopefully! This is something we'd very much like to see happening in the UK!! So yup, in short, we are working on it with the accrediting bodies :) Thanks for following up, doing as much as we can...

Hi again, Yes, they were briefed on this, either by us, constituents or other charities. We targeted MPs based on their level of support to ME (high, medium, low, no support, etc, what type of support -EDMs, previous debates, etc) and hence, tailored our messages to them based on their...

Heya! The MPs were fully briefed and even while we cannot foresee what sort of discussions might take place during a HOC debate, we tried our best to brief them on these aspects. As you can see from our briefing, we were very very clear on the necessary definitions and distinctions re BPS :)...

Hello! Noted. I am not sure Brine's response would have been any different if we have added that. Agreed it would have been useful, but all MPs and the minister had plenty of resources to answer and highlight this (including our briefing and many others that were sent by various charities!)...

It might go for up to 3 hours starting from 2/2.30pm (parliamentary business allowing that starting time!). Last WOW debate was delayed by several hours but let's hope this is not the case! We will be live tweeting and posting on social on the day to provide the most accurate info as we can...