Apparently, I’m a dangerous, activist nutcase

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.

um, there is that...
um, there is that…

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.

Professor Baker said:

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.

 

 

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16 thoughts on “Apparently, I’m a dangerous, activist nutcase”

  1. Uh oh I too have me but its referred as cfs in the states my Drs barely know what cfs is much less m.e. I do have high cheekbones (my native amer indian background) and I am more right than left I am a registered Republican voter & have been my entire life ..
    …..I leave the activism to ppl on twitter who are up on the current issues I live alone Have to save every ounce of energy that I have to take care of me & my 14 yr old Westie I know that sounds selfish but thats my life right now I have major RESPECT for @tomkindlon He says he lives at home so he gets help from his parents so he can research his butt off He’s close to your neck of the woods closer to you than me😉I wish you well in All your endeavors and as always kiss Jake >^..^< woof

    1. I’m not sure it even makes sense, but I was riled. I look forward to you gathering an articulate slideshare of all the issues that I can just send people to!

  2. Hmmm proud to be another activist Fiona! Dangerous? If touch typing is classed as dangerous then I’ll admit to that but the use of the term ‘nutcase’ is a worrying statement from someone in the caring profession!
    The obvious blockage in the pathway to ME care in NI has finally been identified after years of us being fobbed off……indeed such basic human rights requests were probably viewed as nutcase demands!
    Just keep Tuesday 9th Feb 2016 free to witness PACE being debunked in NI, hopefully with the ‘right’ people attending too!
    I’ll be doing lots of dangerous, bed bound activities in the meantime.

  3. I must say that labels like “nutcase” and “dangerous” applied to activists somewhat shocks me. I can’t imagine a world in which people are silenced and intimidated from advocacy roles by slurs and character assassination. In the end if you and your fellow ME activists make any headway in advancing a proper respect for the suffering and challenges that come with this diagnosis, you’ll flick off these silly words like the nuisance they are. I appreciate the humor shared here. It really is ludicrous! I don’t think you’ll ever stop doing good simply because of silly remarks from insensitive and poorly informed people, but it is easy to understand your frustration! I hope you have an excellent week, Fiona! Keep doing good! 🙂

    1. Baffling public comment from a psychologist. I can only assume he forgot that twitter is a public space. Sadly, revealing.
      I hope you and yours are doing OK after the scares earlier in the week- you were my first thought
      x

      1. Thank you so much for thinking of me in light of the local violence, Fiona. It was very upsetting as we continued to hear more about the victims and their families. But for us, all is well. I hope you and your sweet family have a wonderful Christmas. ox

  4. Calling people “nutcases” is just another way to dismiss them. Complex and uncomfortable truths are hard to face. And ME is a long term illness so no quick fixes or quick bucks to be made by pharma. They want you to keep quiet. Keep querying! xo

    1. Thank you for your great blog post- I could never have gathered all that info together 🙂 Brilliant to be able to share real expertise.

      Seats have just been bought for a match in Feb- SpursFan is all excited. He’s only just stopped bouncing from doing the stadium tour in the summer. Big kid 🙂

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