I’m cuddly, not dangerous. I’ve never had cheekbones (a key sign of edginess) and I’ve never been anything other than a wee bit mouthy. The most dangerous thing I’ve done recently was leave the Christmas tree lights on by mistake when I went to the shop.
I’d love to be energetic enough to be active, but I do try. I take an interest in the world around me and try to make a difference. I miss loads, but have learned to focus. My brain can only cope with little bits. It’s important to me to do something, rather than dwell on how miserable I feel. I don’t regard ‘activist’ as a term of abuse. I’m proud of it.
On the other hand, ‘nutcase’.
I haven’t come up with a way to spin that one. It’s just not helpful. This Urban Dictionary definition made me laugh, but its not useful either: A term describing a person who has totally lost their grip on reality. Such people are mainly from the right wing of the political spectrum, and are often politicians and religious extremists.
A Cambridge dictionary definition is better: someone who behaves in an extremely silly way or an offensive term for someone who is mentally ill.
OK- we know I’m not right wing, a politician, nor particularly religious. Reality varies. I can certainly be silly. I take the anti mad tablets, and am glad of them. If anything, my family are even more glad.
I live with Myalgic Encephalomyelitis (ME). I woke up one morning feeling like my limbs were made of lead and that my brain had been replaced with cotton wool. Nine and a half years later, I’m not much different. I gave up work. I lost grip on a lot of what had been my everyday reality. My world has changed enormously due to ill health.
For reasons I never quite understand, ME is a hugely contentious illness. There is a strong psychological school who appear to argue that patients can think or exercise our way out of it, despite evidence that working beyond the limits defined by our illness makes us worse. Regular readers will know that I continue to boom and bust- to do too much when I can, because I can, and then be barely functional for a while, when having a shower is a major achievement.
But, let’s consider for a moment what would happen if ME were a seriously considered illness. We’d need clinicians, pathways of care, tailored medications and treatments, centres of expertise, patient centred care, just like all patients.
We have none of that. In Northern Ireland, we have no treatment which even meets the criteria of the National Institute for Health & Care Excellence (NICE). Sadly, even Mark Baker, Director of Centre for Clinical Excellence at NICE, knows that their guidelines are inappropriate.
He sympathised with the position we were in with the Guideline
The Guideline failed to address the real issues in ME/CFS
It does not promote innovation
It had a disappointing impact on specialist care and commissioning issues.
Our local commissioners aim to meet these these discredited guidelines (they have a long way to go) and have no intention of looking for alternatives. There is neither the mind set not the resources for anything innovative.
It should be no surprise that patients want better care. We want to get no worse, and ideally, get better. We want understanding and support. We want to understand our condition, and we want services that help rather than hinder our progress. We want discussions that reflect our reality.
Recently, there has been some critical examination of the PACE trial, a significant piece of work funded by the UK government. One would expect rigour and transparency in science, but that appears to not have been the case. There are requests for misleading claims to be withdrawn, and for the data to be made available for further examination. That’s not happening- details, discussion and interesting comments from non ME researchers here.
Arguments are being made that people who want strong, evidence based research are at fault for not accepting what they’re told. A prominent psychologist claims to feel safer in war zones than at home, where he’s ‘under threat’ from ME patients. I can’t speak for all of us, but all the ME patients I know are in bed, or wondering how to make a warm drink. We are brain fogged, in pain & can move no faster than a mobility scooter. One could get away from us easily, without the back up of the armed forces. Is it possible this guy has lost grip on reality? Or maybe not met many actual patients?
This morning on twitter, a psychologist referred to people querying the research as ‘dangerous, activist nutcases.’ A psychologist, mind. A mental health professional calling the curious ill ‘nutcases’.
The blood is up.
Stand by, the beast awakens.
But first, a rest.