I have a Syndrome.
Just got back from hospital, and I have to say it was the most useful medical appointment I've had in years. She took me seriously, confirmed the diagnosis of chronic fatigue syndrome (apparently, lots of little things which I regarded as h-l oddities are actually symptoms of CFS - very interesting), and came up with a treatment plan which should not only be useful, it's exactly what I've been asking for based on research.
Unfortunately, the recommendations of the immunology consultant at Sutton Hospital for the treatment of CFS disagree with the NICE recommendations, so what will happen will be that he'll write a very detailed letter to my GP with suggestions, but the GP is free to refuse them because they're off-label prescriptions. Which is a bit annoying: I don't know if at that point I have the choice of simply going to a different GP, or what. As far as I'm concerned NICE can fuck off because they're still using the completely outdated term myalgic encephalomyelitis (ME) alongside CFS, and there's no evidence for any inflammation of the brain or spinal cord in people with chronic fatigue - else it would be easier to diagnose!
Also the nurse practitioner I saw today realised that I Have A Brain (TM) and did not waste time patronising me with small words. She said I had a "high degree of self-awareness", and we talked about things like T-cells, immunological memory, and adrenaline feedback loops. So yeah. Bloody brilliant.
Feel free to leave comments, but for those of you with less time/energy/spoons, here's a ticky box:
Poll
Edit: Crap! I suck! Thank you very much to hatter for driving me & Richard to the appointment! Sorry!
Unfortunately, the recommendations of the immunology consultant at Sutton Hospital for the treatment of CFS disagree with the NICE recommendations, so what will happen will be that he'll write a very detailed letter to my GP with suggestions, but the GP is free to refuse them because they're off-label prescriptions. Which is a bit annoying: I don't know if at that point I have the choice of simply going to a different GP, or what. As far as I'm concerned NICE can fuck off because they're still using the completely outdated term myalgic encephalomyelitis (ME) alongside CFS, and there's no evidence for any inflammation of the brain or spinal cord in people with chronic fatigue - else it would be easier to diagnose!
Also the nurse practitioner I saw today realised that I Have A Brain (TM) and did not waste time patronising me with small words. She said I had a "high degree of self-awareness", and we talked about things like T-cells, immunological memory, and adrenaline feedback loops. So yeah. Bloody brilliant.
Feel free to leave comments, but for those of you with less time/energy/spoons, here's a ticky box:
Poll
Edit: Crap! I suck! Thank you very much to hatter for driving me & Richard to the appointment! Sorry!