CFS (ME/CFS) in the news
**** PART 1: NON-FICTION – Documentaries, etc. – The Facts ****
Facts – non-fiction books and documentaries – are incredibly important for getting the actual story of what is a major unsolved public health epidemic out.
There have been MANY, MANY books on the ME/CFS crisis – memoirs, Ostler’s Web, books getting out the story of the things which have happened, and how money has been consistently diverted from research in the disease because doctors don’t believe it’s even real.
And there will be many more. It is a very serious subject, and causes untold misery WORLDWIDE. It doesn’t affect only women, and the treatments proposed – such as the whole PACE ‘study’ in the UK (aimed at making sick people exercise in a way which makes them sicker – but saving money for their national health system AND blaming the victims) which has been totally debunked by statisticians as ‘bad science.’
But all of that keeps the reader who doesn’t have CFS OUTSIDE the loop of having the disease.
A new TED talk – more facts
My husband just came in, and told me, all excited, that he had just watched ‘this TED talk on CFS,’ and had I seen it?
He’s lived with me having it for 27+ years, and he still has this enthusiasm when the media give my disease, and the people who live with it, any attention.
I dedicated Pride’s Children: PURGATORY to him – because this man in my life is the reason I can write: now that he’s retired, he’s taken over the paperwork I used to do when he was teaching and had not a minute to spare, paperwork I did because it had to be done (educating the kids, getting them into college, paying for it; taxes; whatever was necessary for the house). Paperwork I did, not well, not efficiently, but until it was done.
He does it now, and it consumes all his time in retirement (because he IS doing it well, and setting things up for the rest of our lives, and dealing with how do you live so your nest egg makes it) – and I get more time to write. Which is good, because the writing and marketing have gotten more complex (market book #1 while writing Book #2 is, for someone like me, excruciatingly close to an oxymoron), and I have gotten older and less mobile and less functional.
But, in many ways, he accepts how I am – but he doesn’t read fiction. He hasn’t read Pride’s Children. That I can tell. And Pride’s Children arranges for you to understand CFS – without making it too hard for you.
So when he came up to mention the TED talk, it was almost new to him.
Jennifer Brea’s TED talk:
Should you watch? Yes. Is there treatment? No; only symptomatic
I asked him if I should watch it (I haven’t yet), and would I learn anything new? He thought a minute, and said no. Which didn’t surprise me. It’s a lovely TED talk, I’m sure, and cost Jennifer Brea an enormous number of spoons to do (Hugh Howey was all aglow on his blog when HE saw it), but there was little to nothing I, who have been living with CFS (okay, politically correct people, ME/CFS) over FIVE TIMES longer than Jennifer, and keep up with in various ways, didn’t already know.
I’m glad she did it, but it was for the general public who watches TED talks, not me.
I’m glad she did it, because it is harder for people to trivialize and marginalize and say it’s a woman’s disease, or hysterical, or all in her head, when the victim is a Princeton-educated Harvard PhD student. Princeton – which has as its motto “In the Nation’s Service,” trains its students to be activists and entrepreneurs – with a social conscience. I don’t want this lovely photogenic young lady to be sick, but since she is, I’m glad her entrepreneurial spirit – and help from her friends at Princeton and Harvard – makes MY disease harder to ignore.
Trust me. It is a huge gift to the world. Most people who watch this talk will be inspired, but they won’t get it – and will move on to the next cause. Whereas I KNOW what this effort must have cost her.
Hugh Howey said, on his blog:
…Another incredible talk came from a woman with myalgic encephalomyelitis, or chronic fatigue syndrome. It was one of the most powerful talks I’ve ever seen. Again, it came with a preamble and a warning. We were not to applaud at any time. Instead, we waved our hands above our heads like we would for someone who was deaf. Any kind of stimulation can be exhausting for someone with ME.
Watching Jennifer speak from her wheelchair, pausing to catch her breath now and then, laboring through both physical and emotional exhaustion, brought this disease to life. More people suffer from ME than MS, and the funding is sparse. A mere $5 spent per patient, compared to thousands per AIDS patient and hundreds per MS patient. Part of the problem with ME is that sufferers simply disappear from view. They crawl into darkness. It is an invisible but pernicious problem.
The other and more ruthless impediment is the shame and humiliation those with ME suffer as they are told there’s nothing wrong with them, that it’s all in their head, that they should just overcome the disease with a force of will. Because we do not yet fully understand ME, doctors look to psychological explanations. Jennifer tells us that it’s far better to say “We don’t know.” But the suffering is real. Jennifer will pay a heavy cost for traveling here from Boston, but she gives a face and a voice to the disease. It was a courageous display that brought me to tears…
But that enthusiasm hasn’t translated to something I can see. Yet?
I wrote to him in a comment:
Other huge efforts from people with CFS:
Laura Hillenbrand showed what could be done by first writing Seabiscuit, and then writing Unbroken – narrative non-fiction (not about CFS, but written by someone WITH CFS). It was amazing work, done over MANY years, by someone with NO energy.
Jen Brea ALSO was just featured for a documentary she worked hard on at Sundance which used to be titled ‘Canary in a Coal Mine’ (to indicate that what we don’t know about this illness and similar ones may be critical for more than just its victims) and has been retitled ‘Unrest.’ Again, kudos to this wonderful young lady for the effort, skills, and entrepreneurship which led to a prestigious documentary featured at a major film festival.
**** PART 2 – FICTION: BETTER than facts for developing empathy ****
The novel which lets you experience CFS from the inside is already written. It is called Pride’s Children.
Fiction – the kind I write – will make you FEEL as if you have CFS yourself. Without that being the main aim of the novel. You will still have to live, cope, and aspire to love – while ill.
Fiction gets under your skin.As I keep emphasizing:
Fiction gets around the barriers people put up to protect their hearts and minds.
From feeling too much. From really ‘getting’ it, and feeling its devastation PERSONALLY.
I started writing what I hope will be the definitive treatment in FICTION – in 2000.
Slowly, painstakingly, with a huge commitment to learning to write.I published the first third of the story in a mainstream novel in 2015, Pride’s Children: PURGATORY.
How the CFS part of the plot is woven in, from reviews:
Each obstacle the characters must over come is treated with depth and intimacy. It’s not gooey (I hate that) but gritty in an intelligent and classy way… (KR)
Thanks to Quozio for the ability to easily make images of quotes.