Bravo!

Heartening indeed to see this in yesterday's Independent.

Dr William Weir,  Professor Malcolm Hooper and Countess of Mar, are to be applauded for  publicly challenging the decision to give Simon a medal. A chink of light in the grotesque sitcom of cronyism, that has seen the opposite of science  - conflation and obfuscation - dominate the treatment and management of my illness in the UK.

And, in today's Telegraph we have Dr Charles Shepherd, medical advisor to the ME Assocation - both of us, at different times, had muscle biopsies under Prof Behan - speaking of the need for biomedical research.

Since people with ME have virtually no right of reply when the Wessely PR machine spins out its spin - and it is spin - it is glorious to see Dr Shepherd's words: 'The NICE guidelines on ME are not fit for purpose'.

This is the guideline (in England*) that has been so heavily influenced by the Wessely school, the guideline that is oft-quoted by journalists with an almost religious awe, journalists who have no curiosity about truth. The guideline that advocates CBT and GET, the guideline that harms people with this neuroimmune illness.

*The Guideline in Scotland is not quite as bad.

Scottish Good Practice Statement for ME-CFS

Last night I saw via ME Association that the long-awaited Scottish Good Practice Statement on ME-CFS were available online. I quickly scanned the guidelines, they look better than the NICE nonsense, but I still have to read them in detail. I was thinking, thank God I live in Scotland. Then I did a little googling and was chilled to discover how the process had almost been hijacked by so-called ME 'experts' neuropsychiatrist Dr Alan Carson and GP Dr Clare Gerada (who just happens to be married to Simon Wessely). This no doubt explains why her hugely ignorant comments read like propaganda. Neither Carson nor Gerada have published anything on ME before. Serious concerns about the final draft document not being fit for purpose were submitted to Nicola Sturgeon by patient/carers group in July. I'd like to know why the hell consultant neurologist Dr Abhijit Chaudhuri was not consulted about the guidelines? He is one of the few UK experts in ME, he took over from Professor Behan, who diagnosed me in 1984. But no, we have Dr Carson, who - silly billy! - admitted at one stage to confusing 'chronic fatigue' with 'chronic fatigue syndrome'. Chronic fatigue is categorised by WHO under ICD-48 as 'a mental and behavioural disorder', whereas 'chronic fatigue syndrome' (or ME, its real name) is categorised under ICD-G93.3 as 'a neurological disorder'. Just a wee bit different. I'm almost scared to read the guidelines now and I didn't sleep well, thinking of these scary, blinkered medics yet again putting their oars in. You have to wonder how ignorance comes so easily (and wilfully) to supposedly intelligent health professionals. If anyone reads the guidelines before me and finds good things, please let me know. Maybe we'll be pleasantly surprised.

ME Association's initial response to SGPS: 

 ...However, the very things which had originally been seen as necessary to avoid, had now became entrenched in this review – the dilution of recognition of ME compared to CFS, and the process-driven evaluation of ‘evidence’ with the inevitable devaluation of long-developed clinical understanding compared to often poor-quality CFS research findings...

*update, August 2017: Unfortunately the links to Cathcart ME Support Group regarding inputs of Doctors Carson and Gerada are now broken. For some more background, Dr Carson trained under Michael Sharpe and appears to still think PACE is a good trial. Dr Gerada thinks it is *nihilistic* to describe ME as neurological as patients will then think they have a neurological illness and won't get better. I paraphrase, but you get the gist.