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The colloquium looks really good. And a strong mix of both uk and international, mainly USA & Norway, researchers.

I think it's because there is actually quite a close relationship with the CMRC and the MRC NIHR, their representatives attend at least some meetings and the conference eg here http://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-06.06.17.pdf So they're all sitting on numerous...

Research funding is my biggest bug bear. I'm glad it's got some attention I'm going to comment separately on figures but just have something to say regarding charities which from this you'd think have been lobbying relentlessly for funds, they haven't. The worldwide funding comparison printed...

It is a good article. I'm not sure about GET CBT being regarded as psychological therapy rather than rehabilitative therapy. The clever quote regarding drowning actually came from someone on MEA Facebook in response to a call to how would we distinguish ME from TATT. It's good to see sensitive...

I hope VanElzakker is involved I think it suggests OMF really want to get things moving, I'd wondered if theyd eek out the pineapple funds over five years but I think they're hoping the community can still keep putting in significant money too, to get the momentum going, or nih will start...

Great, i don't know if this is funding a centre that didn't get nih funds or something new but it's great that Harvard as a prestigious centre is getting this fund. Obviously it shows how transformational funding can be, if people actually want to see lots of good science breakIng this cursed...

It's funny I never think of a cure, I'd be insanely grateful for just 10% lessening of severity

I don't give a flying fig what usual practice is. I've come to see that even that language is slippery because they do ofcourse ring fence , or put money up along with calls for applications, for some things - I posted here a few weeks back on £5m up for MH treatments I think, they did for hiv...

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...