Pedal to the Metal

figur hat akku leerI feel like an engine that has been gunning too long. I’m revving revving revving and I can smell something burning and a gear is about to blow. The rest of my life is being neglected. I haven’t been able to cook in weeks. I’m not sleeping well. The house and paperwork and all those annoying daily life things are completely trashed. That’s pretty much the effect of all the advocacy work going on, and I am definitely not the only patient struggling mightily. And I’m one of the LUCKY ones who has a little energy to spare to pour into it. There are patients who can’t sit up in bed without assistance, and they’re just struggling to survive.

There’s lots of other news to talk about and analyze, including the FDA’s report from the April 25th meeting. But I don’t have the bandwidth to write those posts, and most patients don’t have the spare energy to read them.

We cannot get distracted from our mission! If we want to stop the IOM contract for a new ME/CFS case definition, then we have to make that our only focus through September 30th! We have ten days, friends. Ten days to stop a contract that could hurt us for decades to come. This is no time to waver or stagger or stop.

Keep emailing Secretary Sebelius: use my template or adapt it for yourself.

Ask your healthy friends and families to email the Secretary: again, I have a template but feel free to adapt it.

Target Congress and the President: great templates from Liz Willow.

Keep emailing! I know it’s tedious and hard to do every day. Please do what you can. This is a critical moment in our struggle. Anything you can do to help will make a difference.

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5 Responses to Pedal to the Metal

  1. Sasha says:

    Please look after yourself, Jennie!

    Many thanks to you and all the other advocates working on this important issue.

  2. readyforlife says:

    I just sent my emails out and it took longer to do than the last few days. I think the stress of what are government is doing to us with this IOP contract, CFSAC meeting change and the CDC exercise study changed to a one day, has me wiped out and brain dead.


  3. Darlene Prestwich says:

    Thank you and thank you again for your work that is costing you so much! I’m sending more emails the past few days than I have ever done before. It’s one thing I can do to help even in my pajamas. 🙂

  4. Progress with CFS & ME will never occur until HIV gets defunded, and the trillions of dollars of our tax money (currently be supplied to perfectly healthy HIV+ people) gets re-directed into “Gulf War Syndrome (GWS) research.

    All objects larger than oneself require a lever to move them.

    CFS & GWS must UNITE –>


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