Thursday, 21 September 2017

Good news: NICE review - and a science writer who listens

Finally, some good news from NICE, they dug in their heels for ten years with an absurdly harmful guideline - recommending graded exercise and CBT for mild to moderate ME - which they conflate with fatigue - and simply ignoring severe ME - but now they have agreed to a full  review. We can only hope that all the cosiness and networking behind the scenes will be broken down by actual evidence and science. The Royal College of Psychiatry, who naturally did not want an update - must be disappointed that their big cheeses are losing their cold grip over this illness.

Meanwhile, some great research explored at the recent CMRC 2017 (if we can ignore Esther Crawley's involvement). With names like Avindra Nath, Jose Montoya, Julia Newton etc, we are getting to the truth. 

Slowly, slowly.

I rarely go to writers' events - I'm sociable, but mingling usually means standing and I always have to sit down after five minutes - separate myself off from everyone - but in August I attended an event where I met a freelance science writer with a 30 year career in virology/biochemistry laboratory work. I told him about my illness and novel and he was very interested and we agreed to send copies of our respective books. He has since read The State of Me and has also been reading up on PACE. He has a comment piece on ME in the pipeline for an Irish  medical journal.

I have been struck by how  receptive and respectful he has been of  my illness experience. He may even have looked at my blood for Coxsackie, as samples from patients with 'presumed ME' were being sent from Glasgow to Edinburgh in early/mid eighties when I was being diagnosed.

The stuff of fiction.

I am enjoying dipping into his (accessible for non-medics) text on clinical virology (1999). Have learned that enteroviruses are the same size and shape as rhinoviruses but can survive in acidic conditions. I've been thinking of when I first got ill - thirty-five years ago this month - and Coxsackie unbeknownst to me had taken up residence in my gut.

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