Why All Publicity ISN'T Good Publicity.

So, M.E was in the news a lot yesterday. It's rare for it to have such attention paid to it by the media, so often we have to fight to be heard, yet yesterday it seemed you couldn't escape it. Normally I would say this was no bad thing, after all, just mentioning the illness on radio or television may be enough to bring it in to people's consciousness; people who would otherwise be oblivious to it.

Let me start off by saying that in my house, Radio 5 is the radio station that pretty much every radio in the house is permanently tuned in to. We're a big sporting family (well, not myself for obvious reasons!) but everyone likes to be up to date on football and cricket results, as well as listening to their usually brilliant news coverage.

So yesterday morning, as usual, I come downstairs to find my mum in the kitchen, radio on whilst I took a seat in the living room, where I could still hear it. I'd read some things on twitter whilst still upstairs in bed about the coverage that had been on Radio 4, which sadly I didn't manage to hear, but will try and look up online. Then, Radio 5 move on to a discussion about M.E, and I'm all ears.

They started by talking to Esther Crawley, AYME's medical adviser, who has been the subject of death threats due to the research she takes part in. That is truly horrifying, and I am disgusted that people would go to those lengths to voice their disagreement, however strongly they feel about the research being undertaken. People who are behind such threats give a bad name to the M.E community, which is a strong one, and has a very big online presence. Whilst we fight to be heard, these people are giving all of us a bad name.

The dilemma with M.E research is that so much of it seems to be psychological, which lead to the next topic of discussion on the radio. Let me state quiet clearly that M.E is NOT a psychological illness, and has been recognised by the World Health Organisation as a NEUROLOGICAL condition. The problem, however, lies with the continued lack of understanding from members of the public, right up to people in the medical profession, who often refuse to accept this fact, and therefore disregard the illness or treat it as a psychological problem. There is no test for M.E, and so much in unknown about it, and it seems for some doctors that means a problem for them.

So I was disgusted when, once the presenter started taking calls from members of the public, she started grilling them about why they had a problem with M.E being labeled psychological. According to her, it is because there is a negative stigma associated with mental illness, and we don't want to be associated with that. Is that the reason? NO. The reason M.E patients do not wish to be, and should in no case, be classed as psychologically ill, is because M.E IS NOT A PSYCHOLOGICAL ILLNESS. Think of it like this. You break your leg. You can't walk and are in horrendous amounts of pain. So you go to the doctor, only for them to turn to you and say "I'm sorry, I can't help you because you don't have a physical problem, it's a psychological problem you have, it's all in your head." That would be completely unacceptable and wrong, yet this is exactly the kind of treatment M.E patients are subjected to. They have a physical illness, recognised by the WHO and yet are faced with being treated as a psychiatric patient.

To be honest, that is when I turned off the radio. After listening to the presenter speaking to M.E sufferers, and their families, and insisting that maybe the problem we has is that we were prejudiced against mental illness and that's why we weren't happy with the psychological research, and being treated as psychiatric patients, I got so angry I turned off. I have no idea how that segment ended, but in my opinion, the damage was already done.

I would just like to state, for the record, that I have no issues with mental illness. I would never trivialise it, or treat people suffering from mental illness as any kind of lesser being. I understand how devastating mental illness is. Why? One of the people closest to me in the world suffers from depression and anxiety, and I see what she goes through and the scars she bears (literally). I have seen people close to me go through eating disorders, and I understand how horrific an illness anorexia/bulimia is. If I had a psychological illness, my experiences with these people close to me would help me to recognise that, and I would do anything to try and help myself, because I've seen how lives can be nearly lost through mental illness. But at the end of the day, I don't have a psychological illness, I have a physical one, which is why I deserve to be treated in a way that is appropriate for the recognised condition I have.

Yes, M.E research has been focused on psychological treatments, something I neither agree with, or would ever take part in. I believe bio-medical research needs to be the focus if we are to ever get some kind of cure. But death threats are not the way. I truly hope the world will come to realise our struggle sooner rather than later, and that we all get the research in to our illness to help us escape the daily battle. The stigma, and mistreatment of M.E patients needs to stop, and the media needs to get their act together and help us, not hinder our cause by taking us ten steps back for every one step forward.

Sarah x

I'm Still Aliveeeee!

I have been neglecting this blog a bit, especially considering I bang on so much about Harry Potter. You'd think I'd be all hyper-ventilating because the last film just came out. Which I am doing, just not blogging about it ;) Firstly, I don't want to review it because reviewing it without spoilers is pretty much impossible. And all the stuff I want to squee over also involves spoilers. Plus there's the fact I have been to busy watching the film at the cinema to actually talk about it ;) Oh and I've suddenly developed this social life where I feel busy, when in reality, I'm not that busy compared to a healthy person. But compared to the person I was last year, I am so freaking busy.


So yes, where was I? Ramble, ramble ;) I will start working on this blog more soon, I think it needs an overhaul and a new direction, or just some regular posts, so my little old brain is working on it!


In the mean time, if you actually liked my Potter related ramblings then I am using "thing worth sharing" as a shameless plug for my own Tumblr which I just set up ;) http://postpottersyndrome.tumblr.com check it! So whilst I fangirl over there, I might actually use this blog to get more "proper" blogging done.


Until next time!


Sarah x

One Minute Past Midnight

When I first heard that UK cinemas were doing midnight showings of Deathly Hallows Part 2, I knew I had to be there. So, despite the fact I had already booked tickets for a showing later on in the day, I braved it and booked the midnight tickets, after managing to convince my mum to come with me!

The day beforehand was spent resting. I spent the whole day in bed, had a snooze in the afternoon and tried to conserve all the energy I could. I started getting ready around 8/9 o'clock when I couldn't contain my excitement anymore and became restless. I changed outfits, checked and double checked I had both my 3D glasses and my regular ones. I went downstairs around half past 10, to wait for the taxi we had booked for 11 o'clock. I sat in my living room, my Hufflepuff scarf around my neck, a home-made Hufflepuff crest pinned to my chest, ready for the ride to begin.

The taxi arrived, and ten minutes later I was climbing out of the car outside the cinema. I hadn't seen town at that time of night for many years, and, as you would expect, there were a fair few drunkards about! As I walked down towards the cinema itself, one woman approached me with her finger outstretched and called to her friends "Oh look! She's got a Hogwarts scarf on!"

And I wasn't the only one. On entering the cinema I spied two girls seated in the foyer, one of them in a Gryffindor scarf, the other a fellow Hufflepuff. Whilst walking around the cinema I spotted witches complete with pointed hats and broomsticks, people in robes, people with scarves. I felt at home straight away!

Not long after we'd arrived, the Deathly Hallows part 1 screening that had been taking place kicked out and so the foyer was flooded with even more magical folk. We headed upstairs where they had a cardboard cutout of Harry and Voldemort by which people were taking pictures. I wasn't leaving without a photo to mark the night so I braved my hatred of flash to get a picture.

They let us in at about 11.30, where we took our seats, which were numbered due to the demand! We sat, we waited, and eventually coming up to midnight the trailers kicked off. Best moment of the trailers? The advert for Universal Orlando Resort in Florida. The trailer contained a montage of the parks located there, and as soon as the Wizarding World appeared a huge cheer and round of applause filled the room.

After that, the trailers truly seemed to go on forever. People were getting restless, sighing, waiting. Then, the BBFC screen came up, Voldemort appeared and the last scene from Part 1 unfolded. Then, the moment we'd all been waiting for. The WB logo growing ever closer; the film begins.

I will never forget the midnight showing, nor the atmosphere it provided. When we laughed, we laughed as one, when we cried, we cried as one. The famous lines from the book received cheers and applause, as well as those moments we'd all been waiting to see. The biggest reaction? I'm not one to spoil, but a long awaited romantic embrace stole the show.

It all ends here. Yes, the film is out, there will never be another. But Potter isn't over. The number of people in the cinema that night, two full screens of Potter fans show how alive Potter is today. The magic lives on.

Sarah x

Premiere Day!

I actually can't believe the Deathly Hallows Part 2 Premiere is tonight! Seems like so long I've been waiting for this film, and now the publicity is in full swing, interviews are happening left, right and centre and the media circus descends on Trafalgar Square tonight when the stars will gather for the last time. It's so exciting! Yet for the actors, this is the moment it will sink in. Throughtout the press for Part 1, they all stated the Part 2 premiere as the moment it would sink in that it's finally coming to an end.

So tonight, I will be glued to my laptop watching the livestream, whilst being grateful that I'm sat at home in the warmth with as much tea as I like on hand, yet also feeling a touch jealous that all those fans are getting to be part of that moment. Some of them have been camping all week which, let's face it, is pretty dedicated! Puts my Harry Potter fan-ness in perspective, I feel almost inadequate ;)

I imagine the next week will be somewhat of a blur, I've managed to end up with a hospital appointment a few days before I'm meant to see the film, which will mean a strict schedule of rest is in order to see me through the week. But I've been good so far! Now to balance the excitement the countdown to the film will create, whilst not getting so excited that all my precious energy is wasted on that.

I'm sure I'll blog straight after the film, just to have somewhere to squee to my heart's content, and maybe even post a little blog beforehand, time will tell! But I can't believe we really are nearing the end, what a journey.

"Thing worth sharing" this week goes to this article, flying 5000 miles to go to the premiere, just in case you doubted the dedication <3

And a special note goes to everyone who lost their lives 6 years ago today, and to the families still grieving.

Until the next time!

Sarah x