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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 the misguided emphasis on 'balance' there's also a culture of deference that comes into play. I think a lot of science reporters just can't believe...

Re-reading Tom's latest article, I was struck by this sentence: "They suggested that the NICE GRADE system was badly designed for complex problems like ME/CFS." As I understand it, GRADE is considered to be *the* international standard when it comes to rating quality of evidence. The...

Be fair Jonathan - you know how this works. Any time a journalist - investigative or otherwise - publishes an article about ME/CFS which is less than 100% supportive of the biopsychosocial paradigm, they get a phonecall from a kindly-sounding senior member of the British medical establishment...

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 need as a responsible journalist to present the 'other side' of the debate, given that he couldn't get anyone to comment for his first article. I...

Michael Hanlon's 2013 Sunday Times article alleged the existence of a specialised unit at Scotland Yard monitoring 'ME extremists' - however in the same sentence Hanlon acknowledged that nobody at Scotland Yard had actually corroborated this claim. He then talked about a list of activists...

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 was originally published in 2007 and was therefore scheduled to have it's first review in 2010. However NICE delayed publishing that review until...

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 obliged to carry out a review of the 2007 guideline a fixed number of years after it was published. Initially NICE's surveillance committee reviewed all...

I initially felt very supportive of the way Jen Brea dealt with her treatment and remission but I've become increasingly uncomfortable as the months have gone on. Her initial decision to provide a detailed account of her journey to a CCI diagnosis and subsequent treatment did not seem to me to...

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 responsibility you feel to speak up when you see what you consider 'unscientific nonsense' being bandied around - and I greatly appreciate the fact...

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 current understanding then our current understanding is obviously incomplete, inadequate or just downright wrong. I don't think it's particularly...

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 should add a disclaimer to each of her posts on this subject, explaining the current scientific understanding of CCI. Personally I disagree - Jen's story...

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 of the stick - 'cervical medullary syndrome' is a concept that has been drawn up by neurosurgeons dealing with CCI to describe and explain a symptom...

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 to prescribe Rituximab to ME patients while trials were still underway (I know, I know, very naive of me). I'd like to believe that no surgeon is...

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 is "a symptom complex that is quite different from ME/CFS" - from what I've read there seems to be a substantial overlap between the two definitions -...

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 documents by respected neurosurgeons: Cranio-cervical Instability in Patients with Hypermobility Connective Disorders Neurological and spinal manifestations...

Although I bow to your vastly superior medical knowledge Jonathan, over the last couple of weeks I've watched a few presentations by neurosurgeons with expertise in Chiari and CCI. They seem to collectively believe that a whole range of symptoms that are commonly seen in ME - including...

Jen has certainly written that this was her experience and Jeff also wrote on his website that he experienced something similar. However from what I can tell this loss of consciousness doesn't seem to be a core symptom of CCI - I certainly don't remember seeing it in any of the online articles...

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 on another thread a couple of days ago. I've been trying to do some research into CCI and in the process I've seen quite a few descriptions of CCI...

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 the basis of the symptoms you have, once other conditions with similar symptoms have been excluded. As Jen explains in the Medium post that Dr Carrot...

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 see if he/she can find out where the documents you're looking for are held.