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.

The blinkered ones keep their blinkers on

Just saw that the blinkered ones - also known as the National Institute of Clinical Excellence - are at it again. I really don't have energy to get enraged, just wonder how long the fun & games will go on. The Scottish Guideline at least acknowledges the recently discovered XMRV and the blatant damage of graded exercise reported by patients - and by comparison may almost merit the Nobel Prize for Medicine. I'm truly curious to know how many people have cured themselves of ME - and I mean the illness I know as ME , not pretend ME - by following NICE's orders since August 2007. Coincidentally, I came across NICE earlier this evening in another context, on the London Review of Books blog - before I 'd seen the ME Association post above. I left a comment over at LRB. I must've known in my bones NICE was up to something.

And I have just seen this over at the beautifully named blogging not jogging. We are treated to the stupidity of two women named Esther - Esther Rantzen and Dr Esther Crawley, both devoted fans of the Lightning Process. As I said on my comment over there - they sound more like they are presenting Blue Peter, they totally lack gravitas, especially Dr Crawley. And I mean no offence to Blue Peter, just that these women seem more about sticky back plastic than neuro-immune illness.

Keep on keeping on...

I'm late to the party with this, I've had a bastard sinus headache off and on for days:

Thanks to M.E and me blog for this: Professor Malcolm Hooper writes to Vince Cable about MRC-funded PACE trials. Professor Hooper rocks, he keeps on keeping on. And blood ban made it to New Scientist (the pretence that the ban is for our sakes is farcical - and patronising - but hey ho). And a professor of theology criticises Lightning Process trials on children. Also was interested to learn about the Very Reverend Michael Mayne's book A Year Lost and Found in last weekend's Guardian. I had not heard of this book before.