List of the most popular hashtags for theme #CFSRECOVERY

Despite being terrible ill, when people with ME/CFS get bloodwork done, we ::look:: like the picture of health on paper Have you ever wondered why our bloodwork tends to come back looking so normal when we are crazy, hella sick? Here are a few reasons why that happens.⠀ ⠀ The tests that show the dysfunction in our bodies are not available in clinical care. There are ~tons~ of tests that confirm abnormalities in our bodies, but they are only available in research settings. Those tests need a high tech laboratory and a post doc PhD student to perform them. ⠀ ⠀ Most commercially available tests measure dysfunction in organ functioning and gross abnormalities in the blood, which aren’t affected in ME/CFS. This disease majorly impacts the metabolic, immune and neurological systems. These are all areas of the bodies where clinical care lacks a wide range of investigative tools. ⠀ ⠀ There is a long history of diseases that are thought to be psychological until tests and tools were developed to diagnosis and treat them. People with diabetes used to be placed in sanatoriums before glucose testing and insulin were developed. Before the MRI, Multiple Sclerosis was called “hysterical paralysis” and was widely dismissed. ⠀ ⠀ It takes a considerable amount of government funding to properly investigate new diseases and develop tests to identify them. ME/CFS has always suffered from a lack of government support. ⠀ ⠀ The lack of commercially available clinical tests contributes to the disbelief in this very real, biological illness. Doctors should believe us but it’s no wonder why they might struggle to understand the severity of our illness. Most doctors can’t comprehend that governments can be so negligent to not properly investigate a widespread, debilitating illness and provide tools for diagnosis and treatment. But that’s the reality of what has happened in ME/CFS. ⠀ ⠀ However, things are changing. The #DisruptingDisbelief campaign seeks to educate clinicians on the biological reality of ME/CFS. Ron Davis’s nanoneedle biomarker test will likely become available in the next few years.⠀ ⠀ The days of disbelief and lack of clinical markers are coming to an end ✊

This quote is taken from Jennifer Brea’s amazing TED Talk, “What Happens When You Have a Disease Doctors Can’t Diagnose,” link in bio. ⠀ ⠀ If only doctors could just tell us that they don’t know! Hopefully soon, the #DisruptingDisbelief campaign and other forces will educate enough doctors that we won’t have to hear endless bullst from them. Hopefully, this disease will finally be greeted with humility and curiosity! ⠀ ⠀ Since Jennifer Brea’s stunning recovery, I’ve been reevaluating what I do and don’t know about this disease. Before, I was really shut off and judgmental towards stories of ME/CFS recovery. Now, I’ve become open to the great vastness of the reality and possibility of recovery. ⠀ ⠀ My sense of wonder about everything that I don’t know excites me. I’m jazzed to get deep into the research, listen to people’s stories, and truly challenge what I think I know about this disease. I’m on a journey for the ultimate truth about the force that has hijacked every last moment of my life. Anyone with else excited to learn about this disease as research progresses?

My heart is FULL What is it with bank holiday weekends...I went out again...not once...but TWICE. What is going on?!!! I don't even have the words to describe these incredible moments and how it felt. I said hello to actual people as they walked past, I smelt the fresh pollen and earthiness of tree-lined paths, I saw sunshine glistening on water. I have woken up every single morning since and looked through all the pictures I took. Pinch me, is this real? Tears of JOY.

All links in bio, check it out! Welcome to your Wednesday ME/CFS Weekly News Wrap Up! This week was huge... ⠀ ⠀ First off, we have two articles about Dr. Jose Montoya’s termination from Stanford. The community was absolutely rocked by this news, especially his patients. I’m still processing and don’t quite know how to feel. What do you think about what has happened? Please be kind and courteous when sharing your thoughts. ⠀ ⠀ Then we have two AMAZING articles by Jennifer Brea. She continues her series about her bonkers AF recovery and she also pens a beautiful and heartfelt experience with Whitney Dafoe. They are both must-reads. ⠀ ⠀ Then we have another great article about the experience of ME/CFS, featuring advocate @jomoss1975 Check it out! ⠀ ⠀ Much love to all you Warriors out there! Take care of yourself and keep fighting

Can. Not. Believe.. the amount of social events I’ve attended the last 2 months... it’s mind blowing and amazing, scary and wonderful all in one. But the biggest part of these milestones is the RECOVERY after... my recovery after exertion has improved so much, I keep expecting to feel much worse .. and sort of tip toe around waiting for a big ugly crash to consume me... but the ugliness doesn’t come. Yes, I still experience symptoms of post exertional malaise (PEM) but these symptoms have improved dramatically. I’m doing my best to stay within my limits at the events, and I can see and feel it’s getting a little easier, less adrenal each time ❤️ Just baby stepping my way back into the world ❤️ With this amazing human by my side every step of the way

U P D A T E . . . I’m always told, “but you look healthy!” When in reality I feel terribly sick. That’s the thing about invisible illnesses like Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. I know I post stories after I lift and it seems like I’m totally fine. The truth is that my #cfs has progressively gotten worse over the last few months, especially this month I apologize to anyone who I said I wanted to see but haven’t made plans with yet. I do want to see you! It’s just too difficult right now. Please don’t take it personally. I can’t promise that I will be well enough to actually show up and it’s mentally difficult to make plans for the future (i know, sounds odd). The same goes for texts and DMs. It can take a few days, even a week or so for me to respond. I want to talk to you! But it can be draining both mentally and physically to try to have a convo. I would rather wait until I have enough energy be able to give my full attention. I hope that everyone understands my situation and where I’m coming from - I know my friends with #myalgicencephalomyelitis feel me Thank you to my friends who have been so understanding/accommodating. It means the world to me. I am so lucky to have y’all in my life and I love you all so so much Lastly I know I will be okay! This is not a negative post, just letting people know what’s been going on! This is natural for #chronicfatiguesyndrome. Just gotta let it do its thang. I’ll be better in no time! Just more motivation ❤️ - Please don’t hesitate to send me a message if anyone lives with/has questions about #cfsme (or anything). I love hearing from y’all! ❤️ #cfsrecovery

T r u e F a c t • • The day after this photo was taken (which happened to be my 23rd birthday) I woke up with a severe virus that I couldn’t shake off/ sleep off for many weeks. Weeks turned to months and then the virus started developing more symptoms which then became very crippling and disabling severe case of Myalgic Encephalomyelitis... I am still fighting today, 6 years later. My life seriously changed in the blink of an eye and looking at this photo brings emotions to me I have no words for. What would I say to myself in this pic? I have no idea

I often find it hard to talk about my illness, especially online. Mainly because I know I have the privilege of being able to keep most of my symptoms under wraps. I look, to most people, like a “normal”, healthy human being. I attend university full time, I’m very sporty, and enjoy being sociable. . But that doesn’t make my illness any less present. As much as I get through my days, I am always, always aware of it. The pills I take with every meal. The huge list of foods I can’t eat. The over-reaction my body has to small events that would go unnoticed for most people (and hence a constant paranoia/hyper-awareness of myself and my surroundings). The fact that I get tired way quicker that any healthy 22 year old should. And not just “it’s been a busy day” tired. It’s way deeper than that. Some days I wake up and feel like I am ten times heavier than I actually am. I drag myself through the day, with a smile and a lot of coffee, but it’s HARD. And you know the student stereotype of late-night cramming sessions? Well by the time it gets to 6pm I am so fatigued - forget doing any work! . It’s really hard to describe my illness other than I get really fucking tired really easily. And tiredness is something everyone feels, so it can be difficult to explain why mine makes me “ill”. I’m also used to living my life exhausted, I’ve been doing it for years, so I can get through it pretty well without giving away how shit it truly is. Which is why more often than not, I tend to keep talk of my health to the bare minimum. . But as much as I’d like to say I’m “healthy” now that I’m not bed-bound, and as much as I tend to say “yeah I am a lot better now!” when people ask - because I am better by comparison - I’m probably never going to be fully better. Chronic illness is chronic. I’m not cured just because I have a life. But I AM so beyond grateful for the life that I am able to have. And just because it’s hard and tiring doesn’t make me want to live it with any less gusto, and joy, and gratitude. So even though I am not exactly healthy, I am going to live my most healthy, and my most happy and wonderful life that I can. #chronicillness #invisibleillness #livingwithillness