My grandpa taught me two things when I was young. 1. Everything is negotiable. 2. Never accept the first offer. These will come into play later, but let’s start with the good news first. We recently hit our first major goal of 40,000 signatures. What! Thank you to everyone who rallied to make that happen. Especially my sister who harassed thousands. To all of you who took the time to sign and share..thank YOU! I thought with the increased signatures I might receive some response from Collins, Burwell, or their respective institutions. Spoiler: I haven’t. But that’s OK. The point of all this is not to receive a personal reply-- our ask is very specific: Treat ME/CFS like the serious disease that it is, and increase the research budget to $100 million. So long as we make it to that number, or receive a plan to to make it to that number, I’ll leave their email inboxes alone, among other things. That said, I was extremely happy last week to see a headline about the NIH doubling ME/CFS funds for 2017. This would bring us to somewhere around $14 million. True, it’s $86 million short. But, it’s a start. It’s a step in the right direction, if it happens. And that’s where we have to tread lightly. This was not an official announcement by the NIH or from Francis Collins himself. The number came from Vicky Whittemore, the CFS point person who works incredibly hard as liaison between the NIH and patient community. No money has actually been set aside yet, so thus far this amount is a prediction, not a promise. The problem is, similar commitments have been made many times before without being kept. And while this one feels hopeful, we really won’t know until we know. With a changing political tide in 2017, there are no guarantees. The truth is, even if the $14 million does come through, we’re still talking drops in the bucket. Similar campaigns and many advocates argue that $250 million is a more appropriate number given the disease burden and huge gap in the research after decades of neglect. So comparatively, this petition is great deal! Considering the complexity of this disease and how much work lies ahead of us, doubling an already paltry amount is just not enough. So, getting back to my grandpas lessons. I’d like to make a counteroffer to Mr. Collins and/or Secretary Burwell. I’ll see your 14 million, and raise you $86 million. I do want to acknowledge and thank you for taking enough interest in ME/CFS that doubling our funding is even on the table. It’s more than I can say for past Directors in my lifetime. You’re helping to take this movement in a positive direction funding wise, but we have to be serious about the realities of this disease. If we’re going to make real progress, we have to make big changes. This is why I can’t back down from the goal of $100 million. I know we can make this happen, we just need to get creative. We have decades to make up for. We have incredible, intelligent scientists, researchers and doctors who are ready to work hard but are either stalled or unable to complete their work because of money. Renowned scientist Ian Lipkin said he can solve ME in three to five years, but it's all contingent on whether the funding is there. I believe him. Let's let the scientists work--in the lab and not as fundraisers. The two of you have a unique opportunity to ease the suffering of millions of people--to help give them their lives back. Seize it! It’s literally in the best interest of everyone. So, where does that leave us? Signature-wise, I don’t know what the magic number is, but apparently it’s not 40,000. So our new goal is 50,000--Essentially, our goal is whatever number elicits a response. A good one :) For now our power is obviously in numbers and it’s going to take a lot of public pressure to give any priority to this issue. So please, please continue to sign, share, talk. We need you! And we are so incredibly grateful for the publics support. Especially Monty and me. Thank you for giving us a voice and a chance. Onward we fight- Mary *A separate letter with the message here will be emailed to each of the decision makers in the campaign. Just in case the petition goes to their spam inbox or something.