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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...

hi I've just been listening to radio Solent at 7:40am BBC local radio. Great advocacy by local lady regarding millions missing but the main drive from her was lack of funding which was responded to at the end by the same statement from the DOH given to the newsbeat documentary about £3.5m...

In uk it would benefit from widestream networking at least if not central direction. For some type of unified activity and demands. If the main people at uks ME action can't operate due to ill health have they tried recruiting others or could the USA side, which seems so well organised, step...

Where I was possibly wrong was that she said IF you get diagnosis good treatment there's hope and it doesn't last, which can be true. Obviously many in the community missed that boat.

Let's hope the 22 year old can handle views on a forum and isn't too traumatised by a slightly critical comment. she said she went to a clinic which specialises in treatment of CF, not that she had CF as part of ME. I didn't feel I was being unkind. The name being reduced to CF is very common...

Bill I'm far more sick than Lizzie who clearly is better & expects to recover. I commented in a detached not nasty critical commentary way on a forum (about how I felt some of what she said wasn't optimally useful for the community) , where I doubt she frequents. I haven't attacked her...

The way cf is used like that is as an alternative name and a bad alternative name as it is reductionist. Most people aren't stuck in bed just with CF.

I personally donate mainly to smci this year, OMF have a lot of money at the moment and smci are funding great research.

And we dont all get better. To be fair calling it cf and her knowledge may have been formed by the fatigue clinic she was no doubt under - (Crawley?) so she probably has never looked beyond that and AYME for info to learn about ME and all it's stages, severities and prognosis

Great article, very useful too thanks I personally would have gone big on research funding in the media this awareness week but I suspect MEA & AFME are tied in with the CMRC on this and are waiting to see if the "respectable channels " route comes to anything now CMRC have moved, rather than...

The newsbeat program on this 12:45 wasn't so hot. One case study on there called it CF, suggested that there's hope if you really want to get better and it doesn't last for ever etc. And there was talk of getting people up and about and used to being mobile again ( sounds so easy) with GET and...