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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...

Well at least that's one way of getting some research on bedridden people which we can apply to the neglected community in me/Cfs. I've been bedridden for years and never had told me anything about insulIn resistance as a consequence or given any advice on diet because of it which surely might...

I disagree. I think Nice criteria were an attempt too keep CFS vague once Oxford was being discredited. It's the criteria of choice for Crawley. The last thing we need is Crawley type studies forming the basis of a NICE guide - bearing in mind as far as NICE are concerned the biggest exciting...

Someone just posted this on the ME association Facebook page which I've copied. (Thanks to long-term campaigner Anita Roddam for this find and transcript) It's a transcript of a speech by an MP 30 YEARS ago calling for a House of Commons debate on this area of neglect. No mention if PACE...

True but they're also strong on the infrastructure, info and advocacy side too but often their posts on Facebook just get a handful of comments, & when you consider the size of America. Maybe, as you say others get attention, unrest more on that front. They're not a support group like uk...

MERUK have had this sort of thing going in some form for some time I think.

Perhaps , and I include myself in this, we should get behind SMCI a bit more as a community too. I tend to focus on changing the negatives, especially as in uk there's so many, rather than supporting the positives, but that charity has become a fantastic thing due in large part to Dr Z N.

A real shock and a real blow. No information given as to why or where he's going. Maybe the field was too frustrating but I thought he was making a real personal difference

Great news, MEaction are a great global force for change. Maybe it will help the #millionsmissing hit harder

Mark Edwards is now quite a big player in the CMRC. I can't remember much about the study, discussed months ago, but I do know @Jonathon Edwards on PR was actually very impressed with it. The PR thread went into depth on it. Neil Harrison is one of its authors who has done talks, quite...

Well if CFS was just chronic fatigue.... I'm not going to say the study will find nothing useful or is bad but I'm not convinced the researchers get ME at least, but they don't need to do they CFS can become fatigue and ME systemic disease can be ignored. The brain may be key though so at least...