What government office doesn’t receive angry email from citizens? Does everyone leave their jobs because of them? Do people really think that no one will study us and it will all just stop after Dr. Francis Collins gave press releases about taking this disease seriously? We live in a democracy; people are entitled to express themselves however they choose. (I personally haven't sent any emails; I'm just defending democracy and I'm not going to shame someone who has sent emails and judge what they've said in them or gossip about them.) What is Dr. Collin's going to say, that there were some mean ME/CFS patients that sent nasty emails, so the U.S. government research on this disease had to stop! This is beyond ridiculous! Why are we letting them bully us?
Three years (was that just phase 1?), plus whatever else the NIH has to do is too long and not enough. They aren't even studying severe patients. They aren't even studying long-term patients. What kind of study is this that isn't even studying the sickest people? What kind of government is this that won't fund those studies? What about the care we need now? We need centers of excellence so we can get care and we need the research and feedback they would generate. We need home care. Why won't they collaborate with Dr. Ron Davis? Dr. Ron Davis gave a 5-10 year timeline. What if it's longer? People are talking about curing this disease and I hope that they can but look at all the other diseases that aren't cured. Why are we going to be any different? We need lots of serious research and treatment choices and maybe years and years and years of it. Plus, unexpected things happen like Ebola and Zika that take away time and money from our disease. We need a strong foothold. Who knows what will happen next. This is research for about 2.5 million people in the U.S. and it will affect about 17 million people worldwide. It's been said by Dr. Ron Davis that it's going to take a worldwide collaboration of top scientists to solve this. It's also been said (was it Dr. Collins?) that it's going to take an army of scientists to solve this. Yet the NIH is not taking us seriously.
Why is there such inertia in this community about moving the inertia in the government? Why are we on the defensive all the time like we are the ones that did something wrong? Where does this masochism come from? Have we run out of ATP for self-esteem, for self-respect, for self-preservation? I'm not going to apologize for not dying quietly enough for them. What we do here isn't just about our lives either; it's about those that haven't made it this far (stop reading and say a prayer in your own way for them now), and it's about all of those that will come after us too. I'm an only child and because of this disease, my branch of my family tree ends with me. Think of all the generations that came before you and all that they had to endure for you to even exist. Now consider that ending with you because of the politics of this disease. I have some Blackfoot ancestry on one side of my family. On the other side of my family, my great grandmother came to America as a teenager from Poland, but her brother wasn't so lucky; he was shot and killed by a Nazi soldier in Poland when he was gathering firewood. I was never well enough to have children; I got sick at age 17. Now, I'm 50, divorced, bedridden and poor. I don't want to tell another generation that I'm sorry you couldn't get medical care or have children. You see there was this fuss about email and ….
The only thing that people seem to agree on in numbers is PACE. That petition got over 12,000 signatures. Is there something that 12,000 (or more; I'm greedy) of us can agree on? Is there something we can do to come together to effect more change? We can write it politely and strongly. It can acknowledge what is being done and that we are grateful for that but that it's not nearly enough. We can numerically list the things we would like done and refer to those numbered items when we send email so they can further refer to this petition list. It will help us communicate with them (and each other). We can list the things we need. We can voice our concerns about what's being done so that it's on record. For example, we can make note of the researchers that have published research drawing conclusions contrary to the IOM and P2P reports. We can list the people involved who still advocate CBT and GET. Can we all write this together here with each other's input? If we all write it then maybe we'll all sign it! This is all very reasonable if we don't get distracted by other things. With all the writing that goes on here every day, it could probably be done rather quickly too if we don't go around in circles. Can we meld all of our voices into one where each concern that we list is strongly and politely stated and we don't back down. It can be a standing petition and if they do things, a cross out line will go through that item. Maybe this large petition could generate sub-petitions. For example, they fund centers for excellence which was maybe item #4 on our petition and we make a sub-petition specifically for those centers of excellence. We say thank you and then go into more details about what we still need for those centers that are being funded. This would help us all hone our voice together in one place and use that to communicate with the NIH and the media. There is so much power that could be harnessed here is we worked together. It could draw even more people into this forum and make us stronger still.
On another note, and in response to other comments I've read, (I'm sorry I can't get people's quotes; I shouldn't even be writing) I wonder how much Whitney Dafoe and the actions/activism of his family has to do with the movement we are now seeing in the NIH. Having the son of a top scientist in the world dying at home because for 3 decades the government wouldn't take this disease seriously doesn't look very good.
Thank you to everyone who took the time to read this.