A Girl Behind Dark Glasses - Jessica Taylor-Bearman

I hope it’s good. Has the potential to be but I have a slight concern it might focus on her rehabilitation and claim it made a huge difference when to me she still seems very ill. Nothing personal, I just don’t like the impression going out that our disabilities are due to a lack of rehab.
 
Dolphin said:
I hope it’s good. Has the potential to be but I have a slight concern it might focus on her rehabilitation and claim it made a huge difference when to me she still seems very ill. Nothing personal, I just don’t like the impression going out that our disabilities are due to a lack of rehab.
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I'm interested if she documents any mistreatment.
 
Hi, it does focus on the honest approach of having very severe M.E. and not the quick recovery that is expected of M.E Units like the one I was taken to. There is also bits of mistreatment too. It’s from the approach of the voiceless. I hope you will find it of interest.
 
jayletay said:
Hi, it does focus on the honest approach of having very severe M.E. and not the quick recovery that is expected of M.E Units like the one I was taken to. There is also bits of mistreatment too. It’s from the approach of the voiceless. I hope you will find it of interest.
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I hope your publication helps inform NICE and future Parliamentary actions. Thank you sharing here at S4ME, @jayletay! I will be purchasing your book.
 
10 Things About Living With M.E. That You Want People To Know By Jessica Taylor-Bearman

"I have been suffering with a chronic neuro immune disease for over twelve years called M.E. It stands for Myalgic Encephalomyelitis and remains very misunderstood in all aspects. You may have heard of it called by a multitude of different names including Chronic Fatigue Syndrome and sadly still, Yuppie Flu."

"I’m bedridden activist, which means I do most of my advocacy from my bed. It makes a difference to know you’ve helped someone or by writing a book like A Girl Behind Dark Glasses, I can change someone’s perspective on M.E. We all need to live in hope, that’s really important."

https://www.femalefirst.co.uk/books/jessica-taylor-bearman-a-girl-behind-dark-glasses-1147162.html
 
A new book, charting the life of a young woman, is a heart-wrenching yet essential read – not least for the people known as the ‘Millions Missing’.

The Millions Missing
Jessica Taylor-Bearman lives with myalgic encephalomyelitis or ME. It’s a chronic systemic neuroimmune disease. But the disease has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

People have been trying to raise awareness of ME in recent times. #MillionsMissing is a yearly protest and ongoing campaign in the ME and disabled communities, led by #MEAction. Jen Brea’s groundbreaking and award winning film Unrest gave a harrowing but inspiring insight into the disease. And there’s been a flurry of UK parliamentary activity in recent months.

Now, Taylor-Bearman has added to the rising tide of action about ME. She’s published a book, telling part of the story of what she calls the “ME Monster” that invaded her body at the age of 15. The Canary was privileged to talk to her about living with severe ME, the medical profession and society, and her book – A Girl Behind Dark Glasses.
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https://www.thecanary.co/reviews/20...at-millions-of-missing-people-will-recognise/
 
I have just finished reading 'A Girl Behind Dark Glasses'.

@jayletay congratulations, it's a very good book. You write clearly and well and don't hold back anything. Thank you.

For those unable to read it, Steve Topple does it justice in his review.

I think it is a very important book that should be read by everyone who treats people with ME, especially those with very severe ME - therapists, nurses, doctors, carers, physiotherapists etc.

I would not recommend it for pwME who are in a vulnerable state - it is pretty horrific in places and some people will find it too distressing.
 
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