Search results

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...

It's newsbeat radio 1 on about 12:50

The newsbeat program on this 12:45 wasn't so hot. One case study on there 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 Michael Sharpe...

My thoughts and I just want to say it's great seeing severe ME cases getting tv attention which I think is the greatest gift of this documentary. To me it was good to see severe ME stories covered well and very sensitively and movingly, well done to all those filmed. It should certainly...

I think BBC are capable of producing establishment defending stuff on their own.

Not by calling them leading. It just allows them to sound authoritative when theyre not.

In uk I'm lost as to if it's been promoted. I think I've found the right Facebook page now for it but have hardly seen it mentioned let alone promoted on the MEA & AFME pages I mainly frequent. There's not been much discussion on here either. I can't see discussion on Facebook just the odd post...

I've never seen anything by Chalder treating the illness as largely biological or acknowledging any biological underpinnings addressing fears and beliefs as CBT for CFS does is psychological treatment. She doesn't understand why patients don't like her trials- I'm sure tuller has written to...

I personally don't see why Jen breas film is the window for opportunity,it's just an awareness film, the need was there years and was being expressed by patients years. For me Jen breas film and #MM movement is just exerting a pressure and scrutiny which is making it harder for the...

This seems an example of how the MRC " ring fenced funding not what we normally do' which we have been fobbed off with since 2012 is just an excuse for CFS . They're now calling for proposals for MH treatment research with £5m up for grabs...

So who's fault is it, who should have done more and hasn't not making more of that failure to step up been part of the problem