Unrest - My thoughts

Unrest - My thoughts

'Unrest' is a documentary on ME. A very brave woman, Jennifer Brae, documents her journey through the illness and how she comes into contact with many who are in the same situation; suffering with the same awful condition just like her. Now, I'm not going to review the film as quite frankly, there are lots of people who have but I'm going to say this - it's incredibly moving and real.

I will mention certain parts that were particularly influential for those who haven't (or perhaps have!) seen it though who might think 'it's just a documentary on ME'. One, was how Jen was very emotional and open about thoughts of killing herself because her quality of life was that bad, then later on we were shown the horrific suicide rates of those with ME. The next, was how a young girl, Karina, was forcibly removed from her home and placed in a psychiatric unit because in Denmark they believed that ME was a mental condition. This isn't just happening abroad, this is still happening in the UK with people being sectioned. Finally, we hear about the complete lack of funding and continued understanding of an illness which is destroying an unbelievable number of lives.

Moving on, what I wanted to talk about was the Q&A session afterwards as well as some extra thoughts I had on the film. One topic which was brought up was the 'label' of Chronic Fatigue Syndrome vs ME. Chronic Fatigue Syndrome is used my medics, whilst as sufferers tend to use ME. There is an awful lot of debate around the subject, mainly because 'chronic fatigue' doesn't exactly do it much justice as it sounds like we are just a bit tired plus it has a lot of stigma attached, but personally, I think we just need to start working on the cure. Yes, the label might affect some people's views, which in turn may cause issues for funding and other problems... But, the real issue we face is fighting to get the support we need at the moment, the funding to do more research and more understanding around the illness. We should all work together, no matter what the label is at the moment, and have that as a smaller objective, and try really focus on what's going to make the greatest difference.

Next, were two of my points I was too scared to bring up myself. Firstly, in Unrest we saw Jen's husband, Omar, who was an amazing support to her. But what we could make another film about is the support needed for ME patients. Carers, friends and family are doing an amazing job of looking after those with ME with very little support themselves and very little recognition. They aren't applicable for respite, they aren't getting support like other charities can provide because of funding and they are often not seen because the ME patients are so severely ill/have such high care needs. We know the huge amount of ME sufferers now, but for each one, we are talking around 4 people who need to support this individual. I'm not anywhere near as severe as the people on the film, yet I have 2 daytime agency carers plus my family and boyfriend who have to all take it in turns. ME is not just affecting us, it puts a huge strain on those around us too. And they're all doing a bloody good job.

My last point was one mum + I were talking about on the way home. So we saw the film at a small cinema screen, and because we were all so flipping' broken they literally had to make a wheelchair park for everyone to leave their wheelchairs at the front. I took a picture and there were 8 there. And I was shocked. All the adults there who needed wheelchairs, had been given (excuse my language) crap wheelchairs. No support, too big, falling apart... Every one of them has severe enough ME to not manage to be able to walk more than a few metres and we all know that it is a long term condition. Now, I love the NHS, don't get me wrong, I seriously don't know what I'd do without it, but why aren't we giving people what they clearly need and deserve?! Give them a decent, fitted wheelchair then not only can then live their life a bit more and be comfortable, but they can get to medical appointments, to physio, to treatment. Why is it that as soon as you become an adult you don't become applicable for the things you clearly need. I sat, feeling so guilty as I have an amazing wheelchair (which I wouldn't have made it out without, I even had to be reclined after the cinema because my blood pressure dropped) and here, around me are another 7 who need this. I wish something was out there to support them too. But this is the thing, and it's not just with wheelchairs. As soon as you write 'ME' down it makes it 10 times harder to get any equipment, forms are harder to fill in for help and there are such little services available. It's sad, and I hope it changes soon.

With the points made throughout the film and those which come afterwards, its obvious that more research, funding and understanding is needed. Hopefully Unrest will start up more conversations, educate more people and might be shown to that one junior doctor who eventually finds a cure.

Kate x

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