I have a Syndrome.

[baratron]

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 As far as I'm concerned NICE can fuck off because they're still using the completely outdated term myalgic encephalomyelitis (ME) alongside CFS, and there's no evidence for any inflammation of the brain or spinal cord in people with chronic fatigue -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 #1884301]
Edit: Crap! I suck! Thank you very much to hatter for driving me & Richard to the appointment! Sorry!

Comments

[stellarwind.livejournal.com]

That is incredibly awesome. ^_^

[luminare-ardua.livejournal.com]

Good to hear!

[mongoose-bite.livejournal.com]

I'm glad it went so well :) If your GP is recalcitrant I don't see why you couldn't look for another one, but I have no idea how the health system works in your country either.

[baratron.livejournal.com]

It's more that I have approximately 5,000 things wrong with me, and don't particularly want any of my meds to be changed. I've tried many different antidepressants, and several different asthma & allergy meds, and there's a really good reason why I'm on everything I'm on even though some of them are more expensive medications, or older medications, or being prescribed slightly off-label, or...

I'm the sort of person who simply can't go to see any random doctor in the practice because it takes more than the length of a 10 minute appointment to read all of my recent medical history.

Also, being a person with a degree in chemistry, a diploma in biochemistry, and working on a PhD specifically in medicinal chemistry, I actually know what I'm talking about when it comes to medication better than a lot of doctors do. I won't accept being put on a drug because it's the shiny new medication that is being pushed to doctors via free pens from the pharmaceutical company, I want to know about independent, evidence-based research reasons for putting me on it over the drug I'm already on. And I need to be spoken to using the proper terms for things like "bronchioles", not the patronising noddy words like "tubes". It takes me a very long time to train a new doctor every time I have to go and see one - typically as much as a year of regular appointments - which is why I'm so pleased that the nurse practitioner I saw today was totally on the ball and switched to the most appropriate language immediately.

[mongoose-bite.livejournal.com]

That makes a lotta sense. Good luck with your doc then :) Hopefully they'll understand.

[kiya]

Hooray for the power of diagnosis!

[nitoda]

Might the GP prescribe them as private prescriptions? Or maybe the consultant at the hospital would do this? Not sure how much it would cost though so obv. NHS scrips are preferable. I'm sure there must be a way around it if there is a specialist recommending a particular treatment and you probably won't be the first person he's advised to go with a particular off-list treatment.
Great to have the diagnosis and the involvement of the specialist. I assume you will continue to have regular appointments? My ex-manager was going to Sutton I think for his treatment for his CFS. He said something about a patient group for learning to manage life with CFS but I expect you're already something of an expert on that.