My concerns about the NIH’s Pathways to Prevention Workshop on ME/CFS are legion, and I’ve been quite vocal about them. But today I am asking you to participate in the P2P Workshop on December 9-10, 2014.
Registration for attending in person or by webcast is now open, and my hope is that everyone who reads this blog will sign up for one or the other.
Why would I ask you to participate in a Workshop that I have been trying to stop or delay or change? It’s simple: the P2P Panel needs to see us, hear us, and know that we are watching what they do.
I can guarantee you that the P2P Panel will not understand what this disease does. They won’t know that some of us need wheelchairs. They won’t know what a crash looks like. They will have no idea that we are held prisoner by our bodies, unable to cook, read, speak, stand in line, drive, function, live any kind of normal life. They won’t understand that scheduling this meeting right before the holidays imposes an extra and tremendous obstacle to our ability to participate.
How can I be sure that the Panel will not understand these things? Because one of the criteria for their selection is that they have no professional or personal experience of this disease. Because the evidence review is unlikely to convey the seriousness of the disease. Because the P2P Panel’s website does not even mention post-exertional malaise, let alone paint an accurate picture of this disease.
The P2P Panel needs to look around the room at the Workshop and see us. They need to see us guzzling water and electrolytes, sitting with our feet propped up on chairs. They need to see our walkers and canes and wheelchairs. They need to see our family and friends. They need to see us lying on the floor when we become too ill to sit.
The auditorium holds 1,000 people, but in the application for meeting approval (that I obtained through FOIA) NIH estimated that only 100 members of the public will attend. I don’t know if they think we aren’t interested or that we won’t bother to be present at this vital and important meeting. Prove. Them. Wrong. I cannot guarantee that you will have a chance to comment or ask a question. But I promise you that your physical presence in the room will have an impact. I promise you that making this the most watched P2P meeting will have an impact. How can it not? How can we – the people most affected by this disease and most impacted by this non-expert Panel’s recommendations – how can we possibly fail to send a message if we come together and SHOW UP.
Do not acquiesce to being made more invisible than we already are. So please, register for the meeting in-person or by webcast.