This is definitely part of the problem when it comes to the British media. In addition to the emphasis on reporting rather than journalism and...
Re-reading Tom's latest article, I was struck by this sentence: "They suggested that the NICE GRADE system was badly designed for complex...
Be fair Jonathan - you know how this works. Any time a journalist - investigative or otherwise - publishes an article about ME/CFS which is less...
I'm not sure that's fair. He does explicitly say in the final paragraph "I am not endorsing any of what was said above...". I think he feels the...
Michael Hanlon's 2013 Sunday Times article alleged the existence of a specialised unit at Scotland Yard monitoring 'ME extremists' - however in...
Responding to myself here... I've just gone and refreshed my memory. NICE used to review all their guidance every 3 years. THE ME/CFS guideline...
I appreciate I'm probably far too late to this thread to be of any use - but my recollection is that the 2017 review started because NICE was...
I initially felt very supportive of the way Jen Brea dealt with her treatment and remission but I've become increasingly uncomfortable as the...
Jonathan - for my part I hope you will go on participating in these discussions. You've spoken in the past (and I'm paraphrasing here) about the...
I do understand that perspective, but as I've said I don't agree with it. I would argue that if an evidenced account flies in the face of our...
A large part of the disagreement here seems to be over what it means to share your story responsibly. Michel has explained why he feels Jen...
As I understand it - and I should emphasise again that I have no medical background, so I'm very happy to be corrected if I've got the wrong end...
As always, I suppose this is going to come down to how scrupulous the doctors involved are. I was very surprised that some doctors were prepared...
Thanks for taking the time to put this together and share it @Michiel Tack. I don't agree with your statement that cervical meduallary syndrome...
Sure. I don't have a comprehensive list of everything I've read and seen, but this should get you started. Here are a couple of overview...
Although I bow to your vastly superior medical knowledge Jonathan, over the last couple of weeks I've watched a few presentations by neurosurgeons...
Jen has certainly written that this was her experience and Jeff also wrote on his website that he experienced something similar. However from...
Trish - can I ask what these lists said the symptoms of CCI and tethered cord were? (I know I asked a similar - but slightly different - question...
I think that's a perfectly understandable response in the circumstances. But at present we don't know what ME actually is - you're diagnosed on...
You could also forward your correspondence with Bristol's Legal Team to the HRA, asking them to pass it along to the Chair of the review panel to...
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