List of the most popular hashtags for theme #MEACTION

Laura Hillenbrand is an award winning author, humanitarian and ME/CFS Warrior. Having sold over thirteen million books, she is one of the most well-known people with ME/CFS.⠀ ⠀ Her first book, “Seabiscuit: An American Legend” is about champion race horse who became a national legend during the Great Depression. It is the best selling sports book in history. It was adapted into the film starring Tobey Maguire. ⠀ ⠀ Her second book, “Unbroken: A World War II Story of Survival, Resilience and Redemption” tells the story of Louie Zamperini, a promising track Olympian who suffered years as a POW in Japan. “Unbroken” was made into a film directed by Angelina Jolie. ⠀ ⠀ Laura Hillenbrand’s success is all the more impressive considering that she is severely debilitated from ME/CFS. She detailed her experiences with the disease in the New Yorker article, “A Sudden Illness.” This stunning account of her onset as a 19-year-old college student won the National Magazine Award. ⠀ ⠀ “A Sudden Illness” details her immune and neurological symptoms, persistent strep throat, Epstein-Barr and numerous other troubling symptoms. She experienced all the common hardships of this illness: disbelief by doctors, withdrawal from society, loneliness, and a toll on her relationship. In later years, her health deteriorated alongside her massive success as an author. Please check out this stunningly beautiful and brave account of life with ME/CFS, link in bio. ⠀ ⠀ Laura Hillenbrand is also a humanitarian. Besides speaking out for #PwME, she and actor Gary Sinese co-founded Operation International Children, which provides school supplies to needy children through American troops. ⠀ ⠀ Laura Hillenbrand is a great example of learning to find a way to be who you are supposed to be despite limitations. Even though her life is difficult, she has found an outlet and escape from her symptoms. She’s managed to survive and live well with limitations. She is a Warrior and inspiration to us all ⠀ ⠀ You can learn more about Laura Hillenbrand on her website, link in bio. You can also find links to “Seabiscuit” and “Unbroken” in bio. ⠀ ⠀ : laurahillenbrandbooks.com

Researcher, advocate, and Science Liaison at the Open Medicine Foundation. Dr. Christopher Armstrong is a ME/CFS Warrior and he is fighting for you! ⠀ ⠀ Originally from Australia, Dr. Armstrong is associated with the University of Melbourne. He now resides in Southern California for his position at the @openmedf. He continues his research through two part-time scientists at the University of Melbourne. ⠀ ⠀ He has made important contributions to ME/CFS research. He entered the field in 2012 with his first publication on amino acid disturbances. An expert in metabolomics, he published the first comprehensive metabolomics study on ME/CFS in 2015.⠀ ⠀ In 2016, he received the Ramsay award from @solve_cfs for his stellar research. He is a member of Ron Davis’s Stanford Working Group, a few dozen researchers collaborating to accelerate research, the discovery of a biomarker test and treatments. Not only that, but he has also set up collaborative efforts in metabolomic and immunological research.⠀ ⠀ Most recently, he published “Post Exertional Malaise is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation In ME/CFS Cases” along with fellow Aussie researcher, Neil McGregor. This is a FASCINATING paper which has interesting findings that leads to provocative theories. Check it out, link in bio! ⠀ ⠀ Dr. Armstrong has deepened his commitment to battling ME/CFS with his role at The Open Medicine Foundation.⠀ ⠀ Dr. Armstrong speaks regularly at ME/CFS conferences. He is vocal advocate for this disease. He realizes the need for strong advocates and speaks up for ME/CFS often. He has lobbied the Australian government with ME Australia, amongst many other kickass advocacy actions. ⠀ ⠀ Dr. Armstrong is on Twitter (C_W_Armstrong)⠀ ⠀ Give a like or comment to show your support for Dr. Armstrong. Aussies, I would especially love to hear from y’all ⠀ ⠀ Follow for a new “ME/CFS Warrior” weekly. There are so many talented, compassionate, and committed people like Dr. Armstrong fighting for us!⠀ ⠀ : Open Medicine Foundation

Repost @mecfswarrior #millionsmissing #meaction #endmecfs #chronicfatigue #solvemecfs #cfsme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #cfids #pwme #cfidsme #chronicfatigueawareness #openmedicinefoundation #meawareness #cfsawareness #mecfsawareness #cfsmeawareness #cfidsawareness #invisibleillness #chronicillness #chronicallyill #canyouseemenow #spooniewarrior #spoonie #chargie #chargiewarrior #youdontlooksick #tooyoungtobesick #postexertionalmalaise

Using last year’s image since ironically I haven’t been well enough to snap a new one this year, but here we are. Still here, one of the #MillionsMissing, nine years later. Still missing ballet class more than you could imagine. So many people have so eloquently said what needs to be said this week, and my brain is about to actually cave in after a full-on day, so the only thing I wanted to add for now is this: M.E. could happen to anybody. Chronic illness doesn’t discriminate. There really is only so much discreet back-turning people can do, to shrug this off as not their problem, when any day it could easily *become* their problem. Life irreversibly changed when I got ill, and every day is a struggle. Every single conscious decision I make is dictated by my health. It’s an uncomfortable thought, I know, but just imagine if this had happened to you. Imagine waking up every morning feeling like you have the worst flu, and not knowing when, or if, it’ll ever go away. And with all that said, I’m still one of the luckier ones. I’m nowhere near the severe end of the spectrum for M.E. The fact that I’m feeling so poorly today after a difficult work week is a privilege, because I can work. Typing this on my phone is a privilege, because I can sit up and communicate. That’s more than some people with M.E. will ever get, and it sickens me to my stomach that people are still willing to turn their backs on that. Even if it’s just a couple of minutes out of your day or week or year, now is the ideal time do a little something to show your support. There’s a link in my bio to some quick and easy ideas for this weekend, and plenty of info on @meassociation’s highlights and website too: this is my contribution for #GoBlue4ME this year. What will yours be? #MEAwarenessDay

#millionsmissing #meaction #endmecfs #chronicfatigue #solvemecfs #cfsme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #cfids #pwme #cfidsme #chronicfatigueawareness #openmedicinefoundation #meawareness #cfsawareness #mecfsawareness #cfsmeawareness #cfidsawareness #invisibleillness #chronicillness #chronicallyill #canyouseemenow #spooniewarrior #spoonie #chargie #chargiewarrior #youdontlooksick #tooyoungtobesick #postexertionalmalaise

Repost @jonna___maria #millionsmissing #meaction #endmecfs #chronicfatigue #solvemecfs #cfsme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #cfids #pwme #cfidsme #chronicfatigueawareness #openmedicinefoundation #meawareness #cfsawareness #mecfsawareness #cfsmeawareness #cfidsawareness #invisibleillness #chronicillness #chronicallyill #canyouseemenow #spooniewarrior #spoonie #chargie #chargiewarrior #youdontlooksick #tooyoungtobesick #postexertionalmalaise

By the time we arrived to the #mecfsawareness event today my girl was too mentally and physically spent to approach the group. . Doing the best you can is still worth it (even if it isn’t enough for the day). . Sending a million virtual puppy kisses to all of my Orlandonian #MEaction hoomans who placed her pointe shoes in the lineup. . Empty pairs of shoes are often placed in rows at #MECFS events to represent those who could not be there. Attached to each pair is tag listing that individual’s hobbies, goals, and plans that they would otherwise have been able to keep thriving on. . Simply put this is the reality of M.E. (and chronic illness in general for that matter). It’s spinning 20 plates at once and if one falls they *might* all come crashing down. . . [Photo & video description: A young woman in a red top and blue jeans lays on a reclined SUV’s passenger seat with her eyes closed and her arms folded up close to her chest. A golden retriever lays with his body on the back bench seat as his head rests next to hers on the reclined seat.] . #spooniecommunity #disabled #ableism #spoonie #invisibleillness #invisibledisability #servicedog #servicedogs #selfexpression #goldenretriever #mentalillness #cfs #chronicfatiguesyndrome #myalgicencephalomyelitis #orlando #chronicfatigue #mentalhealthawareness #mecfs #chronicillness #soapbox #dogsofinstagram #dogstagram #buzzfeeddogs #Florida #goldenretrieversofig #dogsbeingbasic #goldenretrievertoday

This quote is taken from Jennifer Brea’s amazing TED Talk, link in bio.⠀ ⠀ We all want to get better. But what does “getting better” look like with an incurable illness with no readily available treatments? Without a magic pill, we learn that we can get better from behavior modification, finding the right tools, doing things in a way to work for you, finding some good supportive supplements, finding a diet that supports you, and reducing stress. ME/CFS very, very rarely ever goes into full remission. But with hard earned knowledge and experience, you can slowly learn what does and doesn’t work for you.⠀ ⠀ Pacing is a vastly important skill to learn to reduce post extertional malaise. My best friend with extreme pain from Fibromyalgia says that stress management is the best tool to help her cope with her pain. ⠀ ⠀ Some people find that a certain mix of vitamins or supplements give them a 5% boost or more. For others, medication sensitivities make trying a lot of vitamins a terrible idea. ⠀ ⠀ Some people find a strict “stimulus diet” of avoiding light, noise, touch or smell may reduce or eliminate neuroinflammation symptoms. Others may not have that problem at all.⠀ ⠀ Some people get another 5% or more boost from the right diet. Others may not be effected enough to warrant a change. ⠀ ⠀ It’s a highly personalized journey to find the tools that help you reduce your bad days and give you more stable health. But with time and listening to your body above all else, you can find tips and tricks that lead you to have a healthier body. ⠀ ⠀ Even with long standing limitations, you can build a happy and joyous life for yourself. Love, creativity, joy and happiness are not physical activities. There is so much still to be had even if your body isn’t the way you would like it to be. ⠀ ⠀ Have you found things that work for you? Please share in the comments below while also being respectful that other people may not be helped by the things that help you. But the more we know what works for others, the more we might find things that also help us Photo from telegraph.co.uk

The creative and bold visionaries of ME/CFS are finding solutions for the monumental challenges facing our community. While we have an endless amount of champions, Jennifer Brea, Dr. Lucinda Bateman and Dr. Ron Davis are the top visionaries that are forging paths to change. ⠀ ⠀ When Jennifer Brea became ill, she didn’t resign herself to hopelessness. She created a beautiful, moving and powerful documentary, “Unrest,” which educated so many people. She forged a path to the TED stage. And she also co-founded @MEactnet and created the #MillionsMissing campaign. None of these amazing achievements would exist without her vision for change and tenacity to achieve it. ⠀ ⠀ Dr. Lucinda Bateman is our champion and visionary for access to informed, compassionate clinical care. In the face of a broken medical system, she created the @Bateman_Horne_Center, a Center of Excellence and shining beacon for people with ME/CFS. She and her staff envisioned and created an online course on ME/CFS (link in bio) and the #DisruptingDisbelief campaign. Dr. Bateman is committed to educating doctors on the biological realities of this disease.⠀ ⠀ Our true hero, Dr. Ron Davis, has had the vision to accelerate the pace of ME/CFS research. Instead of doing research the typically way, which takes decades to create progress, he brought together dozens of researchers in the Stanford Working Group to collaborate on research. He created a way for change to happen quickly. ⠀ ⠀ As important as these people are, there is no one more important than the everyday person with ME/CFS. We are the backbone of every accomplishment. With up to 25-30 million worldwide, we have an immense capacity for power. Even though we ::feel:: powerless, we aren’t. The more we all come together and fight side by side, the faster progress will be achieved. ⠀ ⠀ And even though it seems mundane, possibly the most radical, powerful and visionary thing that individuals with ME/CFS can do is survive this disease, work towards creating our optimal health, and have the vision and strength to live well with our limitations. Who is with me, Warriors? ⠀ ⠀ : @wipeoutt31 ⠀ @openmedf⠀ @anadvocateforme