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. The whole point - as far as I am aware - is supppsed to be to get a debate in parliament. Nicky Morgan said there needed to be more time in debate. If I was an MP I'd rather my time used to sign an edm with a purpose. Is the MP even going to grasp the complexities of pace and we need more...

I don't see the point of an edm which was saying MPs recognise that buildings are lit up blue, the charities are doing great, agreeing pace needs is bad and to be overturned (many won't even if they know what you're talking of). I don't see why an edm saying ME is serious, extremely underserved...

It's very different from the descriptions in the letter to WHO. I myself had some success with very careful graded activity until I went too far too fast. I would like to see why this is so for some people, maybe it's simply that in tiny steps increasing strength allows the extra activity to be...

Exactly, AFAIC what can be done depends mainly on how much people in power want it On a practical level how does the government step in like this, where does the money they promise come from. And yes if they can do it here, and so speedily, why not for ME. Like when MRC say they can't ring...

Yes so am I, I'm not sure we are crossing wires

Many of the unrest screenings have had fundraising for MEA as part of it too, so it's not without personal interest

But why not promote it, if you believe you promote, if you don't why attend. Is about looking to do the right thing only, is it about exploiting it for a semblance of action, is it professional pride so they don't want to follow another group, is it about being too aligned to the CMRC to want a...

The virtual black out on the subject from the main charities is somwthing I've raised on here. I also raised it on Saturday , yesterday, on AFMEs page when they casually added that as well as Geneva they'd be in Bristol, no response. Before that on Wednesday I copied the millions missing post...

Yes it looked great. Maybe having one big rather than several smaller is the way to go, if people can travel. But it really well done. Bristol looked good too. London was thwarted by the rain and looked a bit cramped but I've still to see footage from that.

It's on channel 4 now They've started featuring a severe in bed which is good. They're saying what's she waiting for .... They now say we say it's underfunded, misunderstood and dismissed by NHS. The severe girls mum is very good at blasting the patient blaming Mentions the immune system...

I haven't seen anything on tv yet. There's been a massive TUC march covered, plus a knife crime march through London today Also covered. Our movement is equally newsworthy and Obviously our protests can't be marches but I think we are going to need to bump up the numbers attending, at London...

MERUK are posting on their page saying they support this organisation and the letter. I still find it odd to lobby from the outside in.

AFME are saying itv will be broadcasting. That's fantastic. Perhaps AFME can share why they haven't promoted the #MM in the uk generally on their Facebook, encouraging people to attend, or have they used other media to do this?

There's their letter here https://www.actionforme.org.uk/news/iame-letter-to-the-who-for-me-awareness-day/ It's a good letter but this is all news out of the blue with several important groups listed. What has the alliance been doing the past two years, have their been meetings I wonder?

This is what I love about the USA advocacy, it's not just vague awareness raising and saying more needs to be done to end the injustice etc as AFME Have said for years. It's specific demands of specific people with a time frame and attempts to bring a unified mass movement behind it. It's real...

To be honest I think that's a bit of a cop out Russell. We have general awareness raising year after year , MM offers the chance for something new and direct. "If #MissingMillions appears in any press then I will try and post it on our media" MEA social media is constantly posting all manner...

@Jen Many thanks for your reply Jen. The me action uk Facebook page hasn't updated since October 2017 which is why I got so confused as #MM approached. Thanks for the links. I'm pleased to hear you have been getting wide reach through your subscriptions in th uk, I still think we are being...

That's an interesting context - lunacy reigns

I think in comparison dementia is conplaining (justifiably ) of the £90/patient they get. But it's not even for biomedical research, they're not going to put in £10m for biomedical research if they believe, as they seem to still, that CBT and get or pacing or their variants are the low cost...

The thing is this isn't like the NIH recognising the nature of the illness and doing the right things and justifying themselves through that but doing it at just at a far too minor level This is a government unit , and I got the impression at the parliamentary debate too, that thinks largely...