Hope in NIH research budget commitments for ME/CFS?

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OCCUPY M.E. FOLLOWS NIH RESEARCH ON CFS

This is a CFS blog as well as my writing blog. There are much better CFS bloggers, so I don’t do much with it here, but I read and follow developments, as we all wait for some kind of answer.

Jennie Spotila does a lot of things, and in particular, runs a blog called Occupy M.E., where she analyzes what the information actually says.

She’s been running a features for almost a year now, called ‘The NIH RFA Ticker.’ With it she examines every week how the NIH allocates research grant money. In her words in the initial post:

“RFA” stands for Request for Applications, and it is an announcement from NIH saying, basically, we will fund $X amount of research on Y topic. This is different from regular funding opportunities, because the money has been set aside. If enough meritorious grants are received, that money WILL be awarded. That’s different from tossing your application into the general pool and hoping it floats.

NIH last issued an RFA for CFS research in 2006, and we’ve been begging for another ever since.

The weekly update post

Every week she sees how much money has been allocate by RFA by the NIH, and every week since she started, the RFA money for ME/CFS research has been ZERO.

From the Nov. 7, 2016 post, the totals for fiscal year 2016 were:

352 RFAs issued, $2,840,680,617 committed to RFAs, and ZERO RFA money for ME/CFS. Yup. That’s over 2.8 BILLION dollars in your tax money and mine.

The latest update (Nov. 14, 2016) showed how much money is committed so far in FY 2017:

51 RFAs issued, $252,167,563 committed to RFAs, and ZERO RFA money for ME/CFS.

We’ve been promised research, and attention, and money for about thirty years now. MOre recently, with activists holding protests, the promises have been made that they’re going to figure out what’s wrong with us.

Jennie just posts, every week, that actions speak louder than words, and, so far, the actions tell us we don’t count, and there is no one interested in studying us (they have to apply for those research grants), and we should stop bothering them because they’re trying.

I dunno. Jennie posts the numbers. I am giving them a tiny bit more visibility here. I visit Occupy M.E. for the weekly update. She is very polite – these are public numbers. She is much more polite than I am.

And every week I’m outraged.

I don’t know where she finds the energy. I can only shudder at how disabled people with unappealing disease and conditions will be treated these next few years.

You might click through and leave her some encouragement; it has been a lonely haul for so long, it would be nice to see that number, that ZERO, actually change. Even then, it will be a beginning, not an answer, to fund research. But to start a marathon, you have to cross the line.

Application to fiction

After all, this is my writing blog, too.

When I started Pride’s Children, and gave Kary this disease as something to deal with, I was afraid that the disease conundrum would be solved – and the story rendered moot – before I finished it. It would still be a story worth telling, set as it is in 2005, but the edge, the urgency, would be lost if the reader knew that CFS, like, say, AIDS, had been solved. Historic, but not critical.

I needn’t have worried. It may take me years to finish the remaining two books in the trilogy – but we don’t even have a start in this one important area of funding. NIH funding. Government research money spent for the needs of citizens who would love to be productive again, and would settle for not feeling quite as sick. I’ll probably win this race.

Pray for us. But also be outraged with us.

Comments make for happiness and the feeling of being heard.

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7 thoughts on “Hope in NIH research budget commitments for ME/CFS?

    1. Alicia Butcher Ehrhardt Post author

      Someone just pointed out that Reagan was at the helm when AIDS was solved (I didn’t check details) – but it took seven years for him to acknowledge the problem (again, didn’t check).

      Seems a slim hope to rely on good being done by accident.

      You’d think it would be ‘disease identified by government as costing the economy money,’ ‘disease dealt with by government to get those people back to work.’

      My PhD alone cost them a bunch.

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      Reply
    1. Alicia Butcher Ehrhardt Post author

      It is discouraging. We get words – no money, no action so much of the time.

      You know me. I’m a hard worker. I trained for years to be what I was. If I’m a hysterical female with a mental problem (okay, aside from the writing), I tell people I’ll go buy a hat and eat it.

      I believe in Western medicine – but it is so unevenly applied.

      Follow the money – it’s how society keeps score. We’re worth ZERO.

      Thanks for clicking through. Jennie does an amazing job.

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      Reply
    1. Alicia Butcher Ehrhardt Post author

      When you’ve been waiting a very long time, life gets surreal. Twenty-seven years of this is enough to mess with anyone’s head – but we have no choice, and adapt as well as we can.

      But it shouldn’t be our problem – I still haven’t found a specialist in my state!

      My regular doctors have never understood – or been willing to learn – much of anything. Like lepers before Hansen, we are out in the cold with little help.

      I think figuring out the cause will make treatment more appropriate – treating individual symptoms is a crazy way to deal with a major disease.

      Thanks for boosting Jennie’s signal.

      Liked by 1 person

      Reply

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