Hey Friends, I know it's been a while since I've posted here, and a lot has happened since then. It's all added fuel to the fire of our cause here, which is still underway and gaining momentum--but it requires us to continue to speak up and act, now more than ever. I'll do my best to provide an update as quickly as possible. Bear with me. To begin with, I've got some sad news which has taken our family by storm, but is heartbreakingly relevant here. Two months ago, my sister Amelie was diagnosed with MECFS. That makes for the third person in our immediate family to succumb to this disease. Three for five! Going strong. We've all been at a loss for words at times, grappling with the reality that this could be happening yet again. To provide a little background, Amelie is 35--happily married and the mom of two children under 4. Since the birth of her son James more than a year and a half ago, her health began to continuously decline. It was as if each system in her body took turns breaking down. Things happened slow and steady at first, then seemingly all at once. It's like a light turned off inside her. Her skin is pallid, the circles darkened under her eyes, her ability to do normal things totally wiped out. Unfortunately this last month has been her worst--barely able to get out of bed for more than a few minutes. Staying upright causes a severe drop in her blood pressure, dizziness, faintness, nausea, and total body weakness. Along with relentless migraines, it's been a real fun ride for her. She is often too weak to carry her own baby, which has made home-life even harder. If beating this disease were a matter of will-power, Amelie would've been back on two feet a long time ago. I have watched her over the course of this last year try everything imaginable, visit every possible doctor, turn their house upside down to get rid of any possible toxins or triggers--all while this invisible beast slowly consumed her. It's been relentless. I've never seen this disease from the outside, begin and take hold of someone this way. Like watching a train wreck in slow motion. There are a lot of emotions, of course, a lot of anger and sadness, and the further heartache in knowing that that these feelings won't do us much good. Getting mad won't change what needs changing. I go to bed at night asking what the deeper meaning of this could be. I don't have the answer, I only know that now having witnessed up close what this disease looks like from this angle, what it's done to two of the strongest women I know, I am motivated more than ever, more committed to getting creative in order to get Washington's attention, and determined to turn any negative feelings into action. Because what is the truth? The truth is that what happened to my sister is not some hapless anomaly-- it is the story of literally millions of Americans and millions more world-wide. Once functional, happy people with their lives stolen by a disease thats treated like it were some temporary rash. There is no where to go, there are no real options, still no treatments, and only a handful, literally, of specialists in this country who know what this disease is and how to properly treat it. That is too large a truth, too desperate a need to address than to leave me simply hoping that things are going to change and providing a shoulder to cry on. Making this happen will be up to us. It's time to get better. It's time to get our lives back. We deserve at least a chance at a cure. Finding it will be difficult undoubtedly, funding it shouldn't be. The mission to get it is more fired up than ever. I recently met with the Louisiana State Director and spoke with him for 2.5 hours about mecfs: the many, many issues surrounding it and particularly funding--I asked for help in how to appeal to DC efficiently and have this issue tended to urgently. He was an extremely attentive listener and asked all the right questions. Luckily, when he saw this petition and the fact that more than 40,000 people had signed it, he decided he could squeeze me in to see Senator Bill Cassidy face-to-face. Awesome. I have YOU all to thank for making that even possible. Our meeting was short, but he looked me in the eye and said he cares deeply about this issue and wanted to continue the conversation. Call me a romantic, but I believed him. Cassidy is a doctor and seemed genuinely interested in specific aspects of this cause that he may be able to address more rapidly; I believe he could be someone who could really help us. So fingers crossed. I just signed up to go to Washington DC with MEAction and potentially meet with state senators and/or representatives in May about this issue. This will be interesting as my health has been crap the last few months, but this is one trip worth crashing for, and I'm determined to go. You can bet I'll bring all 41,165 of these names with me--including every story, comment, and opinion that people leave on the feedback page. Every name counts. Every comment matters. All I can ask is in the meantime is to please continue to sign or share this on any platform you can think of, or with people you may have skipped the first go around. I realize I've stalled this thing a while, but I'm back on the train. Thank you all again, and please continue to leave your feedback and personal stories on the comments page. If you'd prefer to email me, I can be reached at theothergelpi@gmail.com. When I met with Cassidy, I printed out twenty pages of the personal stories that people have left here over the last six months. I gave that stack of peoples words to him before he left. I can't know whether he read them or not, but I also can't help but think that this is one of the most effective ways to get through to decisions-makers. To leave a bold impact. We simply keep telling the truth. Telling our stories. I shared Amelie's story today, and I will continue to tell more until we achieve this far-reaching need. Until we are all heard. Thank you all again, so much. A hundred times thank you. Lots of love, Mary & Co. P.S. My sister and I have a bet whether we can get the petition to 50,000 signatures in the next few months. April 18th is her birthday--consider every signature an amazing gift to her during a rough time, and a huge help to this cause. Think it’s possible? Of course it is. Let’s do it.