Oh you pretty things, don’t you know you’re driving your Mamas and Papas insane 
Oh! you pretty things – David Bowie

I originally drafted this as part of all the Crapulous business, but never posted it. It came up in conversation last week, and I promised a friend I’d dig it out, polish it up a little, and post it.

A while ago I saw an interesting TED talk by a guy called Roni Zeiger, titled “Who is the real medical expert“. (I was signposted there by the wonderful Myeloma Cinderella – who is just brilliant on myeloma science from a patient’s point of view). In the presentation, Zeiger explores the impact of patient networks on knowledge and treatment. Watching it is 12 minutes well spent, if you are into that sort of thing.

And it rung a lot of bells. I recognised experiences of my own – such as learning about treatment side effects which my doctors largely ignore – or even flatly deny.

I was once told, in no uncertain terms, by a member of my care team who I respect and trust, that myeloma does not cause night-sweats. (That this was an issue in lymphoma, and implicitly that I had got muddled up in my googling.) Really? Tell that to all the people who get night sweats, me included, at one time or another.

I’ve had similar conversations about zometa, which medics frequently tell me does not cause flu-like side effects. Really? Patients know it does.

Most recently, the consultant – Dr Crapulous*, as it happens – is in a flap about my Hb levels, but I wonder if its just a lag from recent infection. When I blog it, I receive this, on social media, from a fellow traveller:
“looking back over my six years of lab work, whenever my Hb numbers were down and outside of a longer arc trend, it was tied to respiratory infections”
Patients know best? Well, maybe I’ll wager an imaginary tenner with Dr Crapulous that my February test results are going to be just fine.

The conclusion, really, from Zeiger and me, is that patient networking can get to places that physicians alone cannot. That patients can identify side effects and correlations. And that patient experts will be a significant contributor to the development of medicine.

So next time I’m caught reading up or writing up on some detail of myeloma, its not just a symptom of my inner nerd, its an essential part of the progress of science. So there.

* Dr Crapulous is not my favourite. I do not hold warm memories of him. Because his “bedside manner” is non existent.
“We met once before, do you remember me?”, he asks.
“Yes” I reply. An ultimately enigmatic statement