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It started 2012 didn't it or 2013. He's certainly had five years there too but was apparently unanimously voted back in. Before that he headed the ME expert group which ran from 2007-8 and was supposed to be about coming together to further research too. Similar people involved. It folded when...

I'd been using a link on meruk website where I'd thought more than 0.5% went to them from amazon. It's worth doing as I regularly shop there simply for convenience, or price but it doesn't make amazon a hero, their tax affairs and many other companies give good cash back on sites such as easy...

There does seem a different feel to the minutes of February, more sense of energy, action and urgency. I wonder if unrest has made an impact, or the nih doing stuff or Esther leaving which opens up space for new approaches

What I find odd about CMRC are how few people part of it are actually doing biomedical research or otherwise involved in the field. So Holgate hasn't done research for a long time, parry just did odd post mortem stuff, Chris pointing , does he actually do CFS research or care? Crawley mainly...

https://www.dementiasplatform.uk/about/governance £53m from MRC since 2014 Dementias Platform UK is a public-private partnership funded by the Medical Research Council. We are proud to work across traditional boundaries, bringing researchers from universities and industry together in the fight...

Hmm Well these people have AFAIC piddled about with groups and conferences since 2008 and not achieved much so don't expect applause for stepping up a gear on the biomedical research side. That's a decade of my life lost, it's not ok. They mention the dementia uk platform, I looked that up in...

Yes they offer services and sometimes fund help. I've only known of them in the context of severe ME , they helped a well known sufferer stay in Burrswood when it used to be a rare inpatient option. Dr paul worthley used to work at Burswood hospital and run the ME section. Before Burrswood...

I need 8-9 but often get around 7. I don't sleep in the day. Sleep is the first thing to go with PEM, I take meds so I get off to sleep but wake early if I have PEM and can get as little as about 4 hours those days. Im in bed all day and I wish I slept all my resting time as I'm so fed up with...

Not really the best person for the program then AFME, or is that why they put her forward, because she couldn't criticise

Well said. This is a discussion forum where people on this issue have tried to be both supportive but will be critical of elements if we see issues. It's not picking holes or something we idly, I've been fully bedridden well over a decade and have heard multiple conferences, debates, media...

That's exactly why it was the last thing we needed repeating by "our side" on yet another national media opportunity and the last time I heard her too, can't remember the occasion. Our side need to be highlighting the real blocks and practical ways things could change and get better.

I will copy the last bit later then people can make up their minds. It's on,y a two minute section. Someone more able might do the rest. I'm not into making unfair accusations I'm saying what I felt the impression was although some of the wording, phrasing was vague. I'm not irrational I hope...

I'm not sure I agree with that I copied the beginning out too. She doesn't say I blame patients but all the sentences, there's more before and after that quote, are that patients anger , refusal to unite and infighting is blocking progress. I hope a full transcript comes up. I have done a bit...

Additional transcript of the Julia newto q Q. What Is the road block here...... A. What it needs is researchers, clinicians and policy makers to come together.... This condition is Associated with quite a considerable history, we heard you describe it as yuppie flu & there is a lot of...

On relistening, Newton was so guarded and careful. She said a few positive things but re. She said that patients and clinicians and researchers were angry with each other... firstly as JE said it's not across the board, then she said because there was no united front/disagreement, policy makers...

fair point. The lack of joining dots us frustrating but uk journalism seems poor on this, there has to be a fundamental sympathy to even see a need to try

What will the public think I wonder?i got the impression patients need to calm down and stop scaring people off or seeming undeserving. I will listen again. I wrote as I listened so may have misinterpreted but there was a lack of constructive ideas for progress at least I thought , other than...

My thoughts as I listened Gary is a good speaker. Being a journalist he might be quite a good advocate. I'm pleased he's recognising the suffering of those single and without support. He's called the current situation a scandal and tragic, good stuff so far. It's important though that he...

Most of the biomedical research is Small scale stuff, sometimes the daily mail pick up on it with an "ME not in the mind after all" story. Whilst it seems medical news is all over the place it's actually more groundbreaking stuff I think then our research which "always needs more replication"...

So what are thoughts? Initially brain imaging at Oxford with lactate as focus seemed good. Funding by Oxford university, again good. Latest high tech, good. Concerns - Psychiatrists Wasn't Brian Angus a PACE promoter Why control with bipolar? Unless they just have interest in both conditions...