#severeME

The things I hide because of chronic illness… even from the people closest to me: 1️⃣ How much I minimize my pain I’ve learned to downplay it—not because it isn’t severe, but because migraine is invisible and explaining it feels like defending myself. 2️⃣ How much energy it takes just to exist Basic things—showering, thinking clearly, showing up— can cost more than people realize. 3️⃣ How conflicted I feel about rest I know I need it. And yet I still wrestle with guilt for slowing down. 4️⃣ How isolating migraine can be Even when I’m not alone, there’s a quiet distance this disease creates. 5️⃣ How often I grieve who I was before migraine Not in a dramatic way. just in the small, quiet moments when I remember how easy life once felt. 6️⃣ How much guilt I carry—for things outside my control Canceling plans. Needing help. Saying no. Feeling like a burden, even when I know I’m not. If you live with migraine or chronic illness, please hear this: You are not exaggerating. You are not weak. You are not doing this wrong. You are adapting to a neurological disease, every single day. And that deserves compassion. Especially from yourself. 🤍 If this resonates, leave a heart so you know you’re not alone. #chronicillness #chronicpain #invisibleillness #migraine

We invite you to spend some time in our online Severe ME Artists' Project gallery this week. The writings and artwork are so powerful. While we premier these galleries in August in honor of Severe ME day, they are available all year. It is so important that we amplify the voices of those with severe ME. This video was shared with us by Katie Roberts who as of August 2023 had Severe ME for 3 years. @katie_andm.e This links to the most recent one is in our bio but we have multiple years available on our site. https://www.meaction.net/2023/07/31/severe-me-artist-project-2023-gallery/. On a personal note, I have always hesitated to share any one piece at a time because no one piece is more important than another. But in sharing any given piece, I am truly hoping to point everyone back to all the available art. I spent time going through different pieces again today and just am awed and humbled. I hurt for the pain and loss and am so very determined that we will effect change together. Let me know if you chose a certain piece to sit with or share today! I did a little reading, a little gazing at paintings and photos, and some video scrolling. I also took time to send so much love to those in their darkened rooms who cannot reach out to pass along a poem created slowly one line at a time over days or find an older piece of artwork done before Severe ME took hold and send it. For those who cannot manage any social media to see a whole community here holding them close. Oh how I hope they can feel that love peek through today and every day. Maybe you can join me in that also. Holly- Social Media Manager #pwME #SevereME #MECFS #MyalgicEncephalomyelitis #art #artist Video description: Various photos including those with Severe ME and a poem is spoken over the video. (with closed captions) The account @katie_andm.e is tagged in the corner. Transcript in comments.

YouTube launched - link in bio - click LinkTree ⬆️ first interview with Sally Callow 💙 #mefoggydog #stripylightbulb * Raising awareness for #severeme #mecfs * Please like 👍 & subscribe; link in LinkTree & moreover please 🙏 help by signing the open letter for a protocol for Severe ME in our NHS Hospitals * Thank you

It’s a message no athlete ever wants to write, but it’s real and sharing it brings me a bit closer to accepting it. During a football session I landed badly and suffered a severe leg break, surgery, long rehab, and months of rebuilding ahead. My season is over before it started, and I had so many goals like training with para Scotland and plans for what I wanted to achieve. The reality is: given the severity of the injury and the long road back, it’s uncertain when — or if — I’ll return to the level I was at before. For me, my body has always been a priority, letting me play and train hard for as long as I have. In the end, though, it was a moment, a split second where everything changed. I’ve got to accept that some things are simply outside of my control. Right now I’m sad by the news, and writing this is part of my therapy. I’m truly grateful for all the support I’ve already received, seeing how far the bond in our community extends, well beyond sport, really shows what true friendship looks like. 🤍 #footballlife⚽️ #Resilience #SetbacksAndComebacks #morethansport

Die Severe ME/CFS Big Data Study der Open Medicine Foundation (OMF) wurde 2015 gestartet und sammelte mehr Daten als jede andere ME/CFS-Studie zuvor. Ziel war es, durch umfassende genetische und biochemische Analysen die Krankheitsmechanismen besser zu verstehen. 📊 Wichtige Ergebnisse: ✔️ Genetische Veränderungen: Die Forscher fanden 96 seltene, potenziell krankheitsverursachende genetische Varianten, die insbesondere das zentrale Nervensystem und neurodegenerative Prozesse betreffen. ✔️ Immunsystem & Viren: Auffällige genetische Veränderungen stehen im Zusammenhang mit Epstein-Barr-Virus (EBV) und der Immunantwort auf Krankheitserreger. ✔️ Hormonelle Auffälligkeiten: Niedriges Cortisol wurde als einer der stärksten Faktoren identifiziert – ähnlich wie in Long-COVID-Studien. Auch niedrige Östrogenspiegel könnten eine Rolle spielen. ✔️ Energiestoffwechsel: Auffälligkeiten im Brain-Derived Neurotrophic Factor (BDNF) deuten auf Probleme mit der Fettverbrennung in den Muskeln hin – eine mögliche Ursache für die starke Erschöpfung. ✔️ Neue Therapieansätze: Die Forscher nutzen „Network Medicine“, um Wirkstoffe aus anderen, besser erforschten Krankheiten zu identifizieren, die potenziell auch bei ME/CFS helfen könnten. 🔍 Was kommt als Nächstes? Die Wissenschaftler arbeiten an der Validierung ihrer Ergebnisse mit größeren Studien und entwickeln potenzielle Behandlungsansätze weiter. Gleichzeitig fordern Patientenorganisationen mehr Forschungsgelder, um diese vielversprechenden Erkenntnisse schneller in Therapien zu übersetzen. Quelle: https://www.healthrising.org/blog/2024/11/06/network-medicine-me-cfs-severely-ill/ Biovora unterstützt mit 40% des Profits aus Supplements die Forschung zu Long Covid und ME/CFS. Besuche biovora.com und werde Teil unserer Mission! #chronischeserschöpfungssyndrom #longcovidcommunity #longcovidresearch #longcovidkids #longcovidawareness #longcovidsymptoms #longcovidrecovery #LongCovid #pots #dysautonomia #postcovid #CFS #MECFS #mecfsawareness #mecfsrecovery #mecfswarrior #mecfs

When I was 9 years old I got the same infection (bacteria) but because my tolerance to pain was really high I didn’t listen to my body back then I ended up with a severe case of infection that had me go under 2 surgery. This time, I was so dehydrated that I ended up at the hospital and found up that same bacteria was attacking me plus I have the FLU A+. I had the FLU B a month ago. I am in the a different antibiotic than last time because I became intolerant to the one I took when I was younger. I am glad that there is more than one antibiotic to fight bacteria’s likes this one. Listen to your body and ask for help when you need to, don’t think that you are going to be a burden because it helps to get a diagnosis earlier. Learned my lesson 😜💖 Thank you to everyone that text me and my parents. also thank you to everyone that commented on my social media platforms. I can feel your love and I appreciate you. Summarize: I got a bacteria and a virus 🦠 all at once. #reels #relatable #listentoyourbody #fyp

This Severe ME/CFS Awareness Month, we’re recognizing the resilience of those facing the most disabling forms of ME/CFS and highlighting resources for both the lived experience community and their caregivers. Co-hosted by Bateman Horne Center and Solve M.E., the Severe ME/CFS Webinar Series is a 4-part video collection highlighting the realities of severe disease and the support systems surrounding it. Webinar Topics Include: 1️⃣ Caregiving – The emotional, physical, and invisible weight caregivers carry 2️⃣ Legal Planning – Navigating guardianship, disability, and financial protections 3️⃣ Medical Panel – Practical insights from clinicians who treat severe ME/CFS 4️⃣ Removing Barriers to Access – Making healthcare, education, and daily life more accessible 🟣 Watch Part 1 now: The Caregiver Experience (link in bio) In this first conversation, caregivers reflect on: ▶️ The emotional toll of watching a loved one suffer ▶️ Navigating a system with limited medical understanding ▶️ How connection, validation, and shared wisdom can help #UnitedForME #SevereME #MECFS #Caregiving #LongCOVID @solve_cfs @openmedf @meactnet @thephysicsgirl @amymooney145 @severemecfs @caregiverwisdom

After 15 years of chronic, treatment-resistant depression and lifelong severe anxiety, TMS therapy changed my life. It saved my life this summer. I am no longer living with depression or anxiety, which I NEVER thought was possible. ♥️ TMS therapy gave me a second chance at life. It has been around for over 20 years, and somehow I had never even heard of it as an option. I am sharing my experience because I want other people to know it exists and that there is hope. TMS looks different for every brain, and there are different types of machines. You might see cap or helmet-style machines, which stimulate a wider area rather than a single targeted spot like the Magstim machine used for my treatment. I am based in Seattle, and the clinic I went to was @eastsidetms in Renton. They used the Magstim machine. If you are curious, I recommend visiting the Magstim website (their insta is @magstim_tms) and using their clinic map to find locations that use this machine. Because it is more targeted, some people experience fewer side effects. Many clinics also take insurance, and TMS can often be covered by insurance. I have more videos and Q&As on my page. If you have questions, feel free to leave them below or check out the other posts. #tmstherapy#chronicdepression #depressionandanxiety #transcranialmagneticstimulation #tmstreatment

#MECFSAwarenessMonth – Day 16 May 2017: Merryn Crofts dies of Severe ME. Merryn’s mum, Clare Norton, is very critical of the PACE trial and the NICE guideline, believing advice to slow down and rest earlier might have prevented her deterioration into Severe ME.

🐙💙 May 12 is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day 💙 This year, we raise the call: 🆘 — Save Our Science. Save Our Society. ME/CFS is a debilitating, invisible illness affecting ~50 million people worldwide — yet it remains one of the most underfunded and misunderstood diseases. 🔹 75–85% of people with ME/CFS are unable to work 🔹 Only 5–10% ever recover 🔹 It can follow viral infections — including COVID — and causes post-exertional malaise, severe dysautonomia, significant cognitive impairment, and many more disabling symptoms 💙 🔹 25% of people with ME/CFS are considered severely or very severely affected 🔹 Many are bedbound, unable to tolerate light, sound, or even human contact 🔹 Some need to be tube-fed or require 24/7 care 🔹 Severe ME/CFS has been compared to ‘living death’ with a comparable/lower QoL to late-stage cancer, heart failure, or AIDS in terms of functional impairment 🔹 It is not psychological. It is biological, real, and devastating Despite this, research funding is shockingly low — less than $15 per patient annually, compared to hundreds for other chronic diseases. There is no diagnostic test, no approved treatment, and no cure. 💙 This May 12, we stand with the #MillionsMissing — those too sick to speak for themselves. 💙 We NEED medical education, compassion, and urgent biomedical research funding. 🆘: Save Our Science. Save Our Society. #MECFS #MEAwarenessDay #MyalgicEncephalomyelitisAwareness #SevereMECFS #millionsmissing

NOT my usual post. But brands need to do better for people who have severe anaphylaxis. This is not an OK reaction to have from only skin contact of a food product. If this would’ve been ingested by me, it could’ve been life threatening. Please please do better ❤️ #awareness #allergies #anaphylaxis #help #sick #support #girlssupportgirls

After treating hundreds of patients with diabetes, one case I’ll never forget was a patient from Australia who came to me with an HbA1c of 14. Severe diabetes. Low energy. Belief that reversal wasn’t possible because he didn’t go to the gym. So we didn’t start with workouts. We started with simple muscle movements he could do at home — even after meals. Because your muscles act like a sponge for sugar. When you contract them repeatedly, they pull sugar from the blood and use it for energy — even without much insulin. These were his core 5 exercises: • Calf raises — improve post-meal sugar use and circulation • Sit-to-stand (chair squats) — activate large thigh & glute muscles that absorb the most glucose • Marching in place — mimics walking to lower sugar after meals • Wall push-ups — adds upper-body glucose uptake and insulin sensitivity • Seated knee extensions — target quadriceps, major sugar-storage muscles Done consistently, these movements help lower blood sugar and improve HbA1c from 14 to 5.6 in just 3 months. 👉 Comment REVERSE and I’ll send you my list of 10 more science-based exercises used to help reduce HbA1c within 3 months. Save this — your muscles are powerful sugar-lowering organs. (diabetes reversal, HbA1c reduction, insulin resistance, blood sugar control, type 2 diabetes help, natural diabetes support, glucose control, diabetic lifestyle, insulin sensitivity, reverse diabetes naturally, metabolic health, diabetes education, muscle glucose uptake, post meal movement, diabetes awareness) #diabetesreversal #bloodsugarcontrol #insulinresistance #metabolichealth #diabetesawareness