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To be honest, as a bitter old cynic I'd rather uk me action worked more independently as the other charities imo can have a dampening effect and simply aren't as outspoken, radical in vision, on some issues, as many of us want. Example last year when AFME attended the MM event and told the press...

They can stick ideas of wait and see Thanks to these advocates, we simply can't accept this. This is not the way to make up for decades of neglect, you don't turn up to a starving town and offer the occupants seed, Walter asks us to stay the course - does he have any grasp of what surviving...

http://www.meassociation.org.uk/research/current-research/pathology-of-cfs/ Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases International Science Symposium 3-4 – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Queensland, Australia: Population Health and...

Yes see post above

Sjogrens is mentioned in above and I believe the DRG stuff in both illness was suggested as some of reason as to why studying CFS and sjogrens together, if you remember the MRC funded study, was a good idea.

From this discussion a few years ago it seems DRG is scannable for by MRI https://www.talkhealthpartnership.com/forum/viewtopic.php?f=493&t=4600 Re: dorsal root ganglionitis by Dr Charles Shepherd on Wed Aug 14, 2013 4:49 pm This finding (ie dorsal root ganglionitis/DRG) is not indicative of...

Yes I would like to know regarding scans. Given scans can detect inflammation in other areas? If it were possible it Would have big implications for research and research of urgency I would say. I hope it's not the case that it's just cost preventing imaging on larger, alive numbers. Much...

I'm glad they're focusing on the research money in the media Watching the royal wedding today I was struck by how the brits like to put on an impressive display to the world - splendid architecture, costly couture, the crowds, celebrating love, youth and beauty - the presenter said no one...

Is that what they were suggesting, I found the jargon hard to read through. Just meet 1 child who can only do one hour home schooling a day or something to see that this shouldn't be psychologised away. Do they accept the fatigue limitations but not more than that for cognitive function. I'd...

I don't feel these people understand ME and have concerns the MRC is funding this avenue pretty much only after funding the bps lot pretty much only. I think it's worth exploring the similarities between ME brain dysfunction and tbi concussion syndromes and it is interesting to me that...

Im I'm not proposing an alternative and I think you have totally misread my meaning. What I mean is that way of framing it, as if it could only happen now etc as an opening up or opportunity instead of caving into pressure for a tragically failed population . Jens film and the movement is...

What does it change? I've written to my MP with more than basic ME info in the past. Do we really think our MPs agree pace and nice and NHS are wrong before a debate and theyre really made to understand the issues? I don't necessarily buy the invisible illness repeated definition as I always...

. 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...