I was thinking about this issue and had a sudden Eureka moment.... WE ALL (us the patients!!) can get it in front of our GP's and whatever Consultants we get to see. This might be a bit UK centric I'm afraid. Plus a bit long. Apologies to all but I'm interested to hear your views. They then can't decide not to read it or look the other way. We're there in front of them in a non threatening and logical way. This probably sounds like I'm trying to tell "my Grandma how to suck eggs" but it had never occurred to me before...........I'd always felt I wouldn't have been able to get the ideas over in a coherent and unemotional way. I have been frustrated, angry and my sense of injustice has been getting in my way for years......to be honest decades! So last Monday, after constructing my cunning plan for my 10 minute consultation with my GP , with a little bit of "Sod it. What have I got to loose?" thrown in, I was determined to "Ask the difficult questions" which my daughter reminded me I'm good at. As it happened, earlier that day my GP had left a message for me to tell me the CCG had turned me down to enable me to be referred to Dr Bansal in Surrey to try and get immuno-modulation treatment. So my tack was the first thing I said was something along the lines of me not being angry with him I'd been turned down, I realised it was just the system. Then went onto asking for my long standing label of CFS to be removed so I wouldn't have to get past NICE. I pointed out having done all the CBT, GET, life style changes, yoga,meditation, etc etc for years and years, that I still had the same symptoms I started with 18 years ago following glandular fever. My logic suggested to me that maybe the label was wrong. What did he think? Upshot at the mo is he swabbed my throat...... first time ever! But he refused to get them tested for herpes viruses............I've no idea why not. He muttered something about no clinical symptoms even though there are easily visible spots at the back of my tongue which I'd explained are there permanently and become more red and sore the more I try and get on with my life. Plus he's referring me to Cardiologist. I had been before 8 years previously, so this gave me the chance to say I didn't want to be referred to certain cardiologists because previously they had treated me as if I was a lazy, neurotic, attention seeking , hypochondriac. I preferred to see a particular Cardiologist who has previosly shown some curiosity about why having followed the NICE guidelines I was still unable to work, enjoy much time with my family and still had many of the symptoms I had started with. Who knows what will happen now. I just hope I don't get men in suits turning up in a black maria and I then disappear into the horizon!? I've obviously been reading too much John le Carre thrillers.