Monday, 7 August 2017

The Twilight Zone


Some of you may be aware that for the first time a full length film has been made about the experience of living with ME, and how society and the medical profession see those patients with ME. I have not yet seen the full film, but the three times I have watched the trailer, I have had tears streaming down my face. It is heart-rending to see film of her before the illness- she is running around on home movie footage, scuba diving, and on her wedding day....then her words: ' I thought I would have longer..'

I have never seen 'my' story on a film before. It upset me more than I can say to see ME from the outside looking in. I thought I would have longer too...

The Jen Brea documentary 'Unrest' will be released in the UK in the Autumn. It has already been heaped with awards in a variety of film festivals in different countries. Jen was a Ph.d student at Harvard University when she became suddenly ill with a high fever and became bedridden. She was initially diagnosed with conversion disorder, and eventually with Myalgic encephalomyelitis. Her own treatment ( both in terms of the medical provision she received and how Drs treated her), prompted her to tell her own story..In 2013 she began making a documentary from bed about her experiences, and also to express the lives and thoughts of the friends with ME that she made via Skype.

As a gifted and exceptionally articulate young woman she has bought discussions about ME into the public arena and has been almost universally ( silently) applauded by ME patients worldwide.  Jen has a wonderful way of public speaking and of raising issues that have not been discussed ( ever) in such a high profile way. Her TED talk crashed the internet, and it is wonderfully expressed....and please remember- Brea is doing all this whilst feeling horrendously ill and exhausted. I urge you to watch this- people need to know how serious this illness is. That is the only way we will get the adequate funding that is needed for research that will discover the bio-marker and lead to effective treatments.

https://www.youtube.com/watch?v=Fb3yp4uJhq0&t=868s

If you are reading this and you have any one of a number of chronic, but poorly researched and understood conditions, you will no doubt have your own horror stories about physicians. Doctors are not intellectually or emotionally prepared to fail at what they do, and it manages to be both shocking, yet not surprising, to see the attitude of medics change when it is understood that your ailments are not acute, but chronic.  We are the patients who have to have the news broken to us, that we are not going to get better- that is not why Doctors spend years training. They train in order to cure people- we make them crash up against their limitations.

Many conditions we now understand to be physical, were originally thought of as psychological: asthma, arthritis, MS, epilepsy...

Many who live with ME, exist in a twilight world of solitude, drawn curtains and no light at the end of a very long tunnel. With no treatment offered in the UK other than CBT and graded exercise ( almost guaranteed to cause patients to crash- and I speak from experience.) patients are assumed to have developed this illness to serve our own purposes...and are refusing to get well.

I hope I live long enough to see attitudes, research funds, and effective diagnosis available to patients with ME. In the meantime, watch the trailer and await, what sounds to be a very interesting film, made by a very courageous woman.
https://www.youtube.com/watch?v=3JMCFFkrEk0




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