Life imitates art for investigative journalism

A red typewriter with a manuscript in progress, with the words: Can a story contribute to the cause it's based on? Alicia Butcher Ehrhardt

EMPATHY COMES FROM SOMEWHERE

ALL my ROYALTIES for Pride’s Children for April 2018, Kindle Unlimited, ebook, and print, will be DONATED to: Help me help ME/CFS investigative journalist, David Tuller, PhD Public Health, Berkeley, get funding for another year.

David has been unbelievably hardworking this past year – and is up to speed. More than that, he is feared (that’s the only thing that explains it) by the UK psychologists who insist a disease I’ve had for 28+ years is both all in my head, and can be cured by 1) changing my belief system, and 2) doing more exercise.

I won’t tell you how useless it is to turn a real physical illness into hysteria. And that I would be in perfect shape if exercise helped: it is KNOWN to make everything worse for us – within very strict limits, I stay as fit as possible, but going over those limits will crash me for days.

Sympathy comes from watching someone else’s story

Beautiful real life ME/CFS (ME/CFS – myalgic encephalomyelitis/chronic fatigue syndrome) sufferer Jennifer Brea gets our sympathy, for her wonderful documentary UNREST (hope you’ve seen it) portraying her personal story, and that of others.

She’s much more photogenic than I am. The documentary was actually nominate for an Oscar!

She’s also had ME/CFS much less time than I have. I really hope she recovers – something which seems to work better for patients if they rest aggressively in the early years.

But to get EMPATHY for this disease

which has devastated the lives of so many millions worldwide, you either have to get the disease (please don’t) or live it virtually – by reading. Pride’s Children: PURGATORY lets you live with CFS for long enough to see how it gets into your bones and affects everything in your life. And yet it is only subtext to the story.

One more degree of difficulty for life, living with a tiny fraction of the energy able people take for granted.

I want more people aware of what someone with ME/CFS goes through, and it is similar to many diseases in some of its aspects. Chronic invisible illnesses hide everywhere among us, and we keep them hidden because no one wants to listen to the details.

As Pat Patterson, Amazon reviewer, says:

“You get a private tour of the life of someone living with an incapacitating disease.”

If you haven’t read, or know someone who hasn’t

This would be a good time to get them to read – even to gift them Pride’s Children: PURGATORY on Amazon.

As I’ve probably mentioned more than once before, I make about the same amount in royalties whether you buy and ebook or a print version, or borrow the book from Kindle Unlimited (with subcription or free trial). Paper is more expensive because there is, well, paper and shipping involved. But because it is a nice fat book, I’ve been able to price so that any of the formats available (including a KU borrow) have about the same effect on my bottom line. So you can freely choose which is your preferred format.

And do a little extra with your dough.


A brief description from Pat Patterson’s review:

“Kary is CLEARLY a hero, by any criteria you want to apply apart from armed combat, and she is the center of the book. She lives in isolation in New Hampshire, and writes; she suffers from Chronic Fatigue Syndrome, and it robbed her of her previous career as a physician, and gave her weak/treacherous husband the excuse he needed to rob her of her family. She has other grief in her life, but she does not share the pain casually.

“Andrew is an Irish actor/singer/modern day knight, who is on the verge of explosive fame, who values his privacy and guards it like a dragon guards his gold. Their paths cross in a late-night talk show, and sparks fly.

“Bianca is a drop-dead gorgeous actress who resents being trivialized by her spectacular beauty. She is attempting to pry credibility from the paws of the power structure, and intends to use Andrew as the crowbar.”

Hey, when your readers are so articulate, it’s much better to quote them. (Used with Pat’s kind permission.)


Thanks to Stencil for the ability to create images like the one above – their picture and fonts, my words.

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8 thoughts on “Life imitates art for investigative journalism

  1. Janna G. Noelle

    I’m curious: is CFS a disease that disproportionately affects women? I ask because it’s usually these sorts of conditions that receive the “all in one’s head” designation in mainstream medicine.

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    1. Alicia Butcher Ehrhardt Post author

      4 women for every man affected – hard to know exactly when the research to develop biomarkers is behind, and there are no proven drugs for the disease (symptoms have some), so you can’t tell for sure. And men talk about it less – even though I know some men who are very affected, to the stay in a dark room all day for years point.

      The point is that David Tuller (and a slew of statisticians who figured it out when they finally received the data – he’s the messenger in many places) found that the research money spent on PACE was basically paid for junk science.

      I don’t want to go into details – have all kinds of articles and papers – but there is a strong suspicion that the psychologists (NOT MDs) are involved in something which saves British insurers for disability lots of money. And we need it cleaned up. Getting the money back is probably not going to happen, but if it is not true (and most of us think it isn’t, especially after the reanalyses), it needs to be thoroughly debunked. We’ll know when the Lancet has to retract it.

      Having a disease with basically no medical help for 28+ years has left me extremely cynical of organized medicine’s ability to police itself. I can’t waste energy – there’s a flare up of activity like this every couple of years, and I really hope this one makes real progress – but I have to live what life I have, in my parsimonious way, rather than wait even longer to be rescued. But I’d really like people getting it now to get identified and treated – there is some research that shows if you rest aggressively in the beginning, you may recover much more.

      Look on Youtube for What happens when you have a disease doctors can’t diagnose | Jennifer Brea – her TED talk on CFS.

      I’m waiting for two things: 1) my energy back, and 2) a married black lesbian Catholic bishop. Before I die, Lord, please. Hope I don’t get into trouble for the second one.

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  2. joey

    That really is a great review. I’d use it, too.
    I really do think changing our thoughts and all kindsa spiritual/ philosophical pursuits help us live better lives. *But it’s not going to cure anything* The assumption that an illness is all in the head can be refuted by blood markers and brain scans and oh my gosh, how many other things? So a big whatever to those people and their stupid assumptions.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Linda. It’s my own sneaky little agenda. All Kary wanted to do when she became a physician was to do her job, help babies, and have a normal family life (albeit a busy one) with a husband and children.

      Didn’t work out that way.

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      Reply
  3. Catana

    I can’t believe anyone is still pulling that crap about it all being in your head, and if you just… blah, blah, blah. That’s how fibromyalgia started out. When I first came down with it, several decades ago, it was swept under the rug as another of those imaginary conditions adopted by hysterical women. Because women just *love* having their lives limited by something the medical profession can’t do anything about, so would rather pretend it doesn’t exist.

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    1. Alicia Butcher Ehrhardt Post author

      From the very beginning. People are dying of it, but the symptoms are not easily measurable, so they must not exist.

      If anyone really believes I would CHOOSE the extreme restrictions – much less that a PhD in Nuclear Engineering is hysterical…

      But they do. They learn NOTHING about ME/CFS in med school (nor much about pain relief – 7 hours out of their total ‘education’ is what I heard), and then feel free to pronounce.

      CFS isn’t a sexy disease.

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