Thursday, 14 April 2011

Bad attitude

Interesting article on how ME is often perceived by doctors when you are consulting them for something unrelated. I recall a few years ago being given some test results by a consultant, they were normal, my book was about to come out, this was in my notes - when I told him what the book was about he did some internal shifting and said something like, Off you go now and enjoy life as if I were a five-year-old child who had grazed her knee. The word ME not only had zero impact, it had negative impact. I was furious afterwards, the way he had dismissed twenty-five years of serious, life-changing illness. He, of course, would - I hope - have no idea of the profound insult he had delivered me, he was just hopelessly misinformed about ME.

In her article above, Toni Bernhard, author of How To Be Sick: a Buddhist-inspired guide for the chronically ill and their caregivers, speaks chillingly of how a doctor 'disengaged' with her during a consultation as soon as she mentioned she had CFS. It's scandalous that we as a patient population still have to put up with this nonsense. If I had told the charming consultant I had MS, I imagine his response would have been very different. When I first moved to Edinburgh I had to 'shop around' to find a GP who believed in ME - this was mid-nineties. One woman I had a pre-registration consultation with told me I was too thin, asked did I eat enough, and made it very clear that 'she did not believe in ME, but she couldn't speak for her colleagues'. I left with a lump in my throat, consumed by anger and hurt at being treated so unjustly. It's exchanges like this that nick like paper cuts and after a lifetime, they turn into sores. Like most people with ME, I have a list of such stories.

And the PACE scientists have just reinforced this erroneous belief that ME is not a serious neuroimmune illness, but one that is reversible, curable by 'words and walking'. One of my favourite moments of the NIH workshops was when psychologist Fred Friedberg, in response to a neurologist's question about Chalder et al's claims to cure ME, dismissed the 'UK studies' as 'inflated claims'. It's 118 mins in.


Toni said...

Thanks so much for blogging my article. I didn't know you were on Facebook. I bought your book when it first came out and thought it was beautiful. It's great to meet you!

nmj said...

Glad you enjoyed novel, Toni, that makes me happy. Your article really resonated with me: it's like we live on a different plane from other sick people, or in a different geographical state. We're not just facing the many losses that any longterm illness brings, we're facing irrational prejudice from members of the medical profession, all thanks to the domination of a clique of medics and its entourage of health editors, who perpetuate untruths about our illness. It stinks, it really does. Great to see you have journalists like Amy Dockser Marcus over there, we have no prominent journalists here who are really fighting our cause, they are all Wessely lapdogs.

nmj said...

Patronising, offensive, nonsense from Vivienne Parry, in defense of PACE.

Susannah said...

I have a list of those stories, yes, that's for sure!

It's really hard in this country to find a GP who really believes in ME - and really, how are we expected to get proper, fair treatment and care when the people 'caring' for us are taught that our illness isn't real. It's a nasty vicious circle that's ruining untold amounts of lives.

I've all but given up on the medics now. I deal with most things on my own. I'm bedbound and they won't give me a home visit anyway - so really, how much are they ever going to be able to help me anyway, even if they did believe me?