Though not book-related, this one is very close to my heart. I experienced severe ME/CFS for approximately four years, and it was hands down the most excruciating thing I've endured. Despite the misleading name, chronic fatigue syndrome can be a brutal, intense illness that I liken to being tortured, and despite it being 2024, sufferers are still often misunderstood, medically gaslit, dismissed, and even ridiculed. 💔 If you have a loved one with ME/CFS, please reach out to them (or their carer) by text this week and let them know you're thinking of them. Do this regularly, if you can. It can be an incredibly lonely illness, and patients need all the love and support they can get! ❤️🩹 P.S. Happy Mother's Day to all the beautiful mums out there. #chronicfatiguesyndrome #mecfs #millionsmissing #pwme #mecfswarrior #mecfsawareness #invisibleillness #spoonie #chronicillnesswarrior #myalgicencephalomyelitis #spoonielife #cfs #chronicallyill #chronicillnessawareness #butyoudontlooksick #cfsme #dysautonomia #pots
Pippa the Eviscerator of Frogs.. my little birthday girl #dogsofinstagram #dogstagram #dogsofinsta #supportdog #doglove #mecfs #cfsme #chronicfatiguesyndrome #myalgicencephalomyelitis #pwme #mecfsawareness #morethantired #spoonie #spooniefamily #spoonielife #disabilityawareness
Spoomento – Spoonie-Mentoring – A better life for Spoonies - zurück ins Leben ! 12. Mai – International ME/CFS Awareness Day Heute zum Int. Tag von ME/CFS wollen wir in einer gemeinsamen konstatierten Aktion auf unsere unbefriedigende Situation aufmerksam machen. Auch die Demonstrationen werden für viel mediale Aufmerksamkeit sorgen. Wer selbst nicht aktiv werden kann, kann uns dennoch unterstützen. Bitte liked, kommentiert und teilt die Beiträge wie verrückt, auch wenn es heute Viele sein werden. Jetzt kommt es darauf an, und zwar heute ! Nur heute werden wir diese große Aufmerksamkeit bekommen, bevor alles wieder seinen gewohnten Gang geht. Mobilisiert alle Kräfte die verfügbar stehen. Vielen herzlichen Dank für Deine Unterstützung, denn auch Dein Handeln ist so wichtig, auch wenn es dir nur als gering erscheinen sollte. Allen einen schönen Feiertag – verbunden mit dem Wunsch, dass unsere gemeinsamen Anstrengungen die Früchte tragen, die sie verdient haben. Du bist wichtig ! Schenk' mir dein blaues Herz ! 💙 Jörg Mach mich zu Deinem Botschafter „Spoomento-Supporter“ durch Folgen, Liken, und Comments mit💙 FOLGEN kann ja nicht schaden ;-) #spoomento – Spoonie-Mentoring @spoomento auf YouTube 💙 „Nerven-Nahrung“ – der Podcast für Spoonies Da, wo es Podcasts gibt. https://www.jwartmentor.com/cfs bald www.spoomento.com #MEAwarenessDay #MECFSAwarenessDay #MECFSAwarenessDay2024 #MECFSAwarenessTag #May12 #MillionsMissing #MillionsMissing2024 #GoBlueForME #CanYouSeeMEnow #MECFS #pwME #MyalgischeEncephalomyelitis #MyalgicE #chronischKrank #chronicIllness #LongCovid #PostVac #StillSickStillFighting #TeachMETreatME #mecfs #cfs #postvac #postcovid #erschöpfung #spoonies #spooniecommunity #alwaystired #spoonie-mentoring #spooniejörg #spoomento
#WorldMEDay #LearnFromME #MyalgicEncephalomyelitis #pwME #nzmecfsawareness #nzlongcovidsupport #nzlongcovid #towardswellness #mecfsawareness #longcovidkids #longcovidsupport #longcovid #AwarenessProject #GlobalVoiceForME #MEAwareness #learnfrommenz #WorldMEDay #InternationalMEAwarenessMonth #LearnFromME #missingmillions #MECFS, #EMSFC, #MECVS
12. Mai Welt ME Tag (DE Version) Myalgische Enzephalomyelitis (G93.3 - auch bekannt als ME/CFS) ist eine neuroimmunologische Multisystemerkrankung. Sie verursacht Dysregulationen von Immun-, Nerven- und Energiestoffwechselsystemen. Häufiger Auslöser sind Viren, auch SARS-COV-2. ME beeinträchtigt alle Körpersysteme und führt zu schwerer Behinderung über Jahre. Für die meisten Patienten lebenslang. ME kann tödlich verlaufen. Mit geringerer Lebensqualität als bei z. B. Schlaganfall, Lungenkrankheiten, MS, Herzinsuffizienz und diversen Krebsarten. Es gibt (noch) keine Heilung oder Therapie. ME verursacht weit verbreitete Schmerzen, orthostatische Intoleranz, Taubheit, Schwäche, Zittern, Erschöpfung, Kopfschmerzen, Schlafstörungen, kognitive Dysfunktion und dutzende andere zufällig schwankende Symptome. Das Leitsymptom von ME ist die Post-Exertional Malaise (PEM, auch bekannt als PENE oder PESE), eine ausgeprägte und anhaltende Verstärkung aller Symptome und Verschlechterung des allgemeinen Zustands nach geringer körperlicher oder geistiger Anstrengung für Tage, Monate oder dauerhaft. 25 % der Patienten sind schwer betroffen: hausgebunden oder bettlägerig. Intolerant gegenüber Reizen wie Licht, Geräuschen, Gerüchen und Berührung. Einige sind sogar gelähmt und / oder müssen künstlich ernährt werden. #MillionsMissing #MECFS #PwME #spoonie #myalgicE #severeME #myalgicencephalomyelitis #mecfswarrior #MyalgischeEnzephalomyelitis #pots #chronicallyill #endMECFS #canyouseeMEnow #chronicpainwarrior #invisibleillness #dysautonomia #MEawareness #disability #worldmeday #learnfromME #may12 #MECFSawarenessday #corona #Covid19 #LongCovid #PostCovid #neurologicalillness #postviral
May 12 World ME day (EN version) Myalgic Encephalomyelitis (G93.3 - also known as ME/CFS) is a neuroimmunological multi-system disease, causing dysregulation of immune, nervous, and metabolic systems. Common triggers are viruses, including SARS-COV-2. ME affects all body systems and causes severe disability for years. For most patients, lifelong. ME can be fatal. With lower quality of life than e.g. stroke, lung disease, MS, heart failure and various cancers. There is no cure or therapy (yet). ME causes widespread pain, orthostatic intolerance, numbness, weakness, tremors, fatigue, headaches, sleep disturbances, cognitive dysfunction, and dozens of other randomly fluctuating symptoms. The leading symptom of ME is Post-Exertional Malaise (PEM, also known as PENE or PESE), a marked and persistent intensification of all symptoms and worsening of general condition after little physical or mental exertion for days, months, or permanently. 25% of patients are severely affected: housebound or bedridden. Intolerant of stimuli such as light, sound, smell, and touch. Some are even paralyzed and/or need artificial feeding. #MillionsMissing #MECFS #PwME #spoonie #myalgicE #severeME #myalgicencephalomyelitis #mecfswarrior #MyalgischeEnzephalomyelitis #pots #chronicallyill #endMECFS #canyouseeMEnow #chronicpainwarrior #invisibleillness #dysautonomia #MEawareness #disability #worldmeday #learnfromME #may12 #MECFSawarenessday #corona #Covid19 #LongCovid #PostCovid #neurologicalillness #postviral
J’ai eu le grand plaisir de collaborer avec l’AQEM (@aqem_sfc) pour cette campagne de sensibilisation à l’EM. I had the great pleasure of collaborating with the AQEM for this ME awareness campaign. 𝗜𝗹 𝘆 𝗮 𝗹𝗲𝘀 𝗢𝗹𝘆𝗺𝗽𝗶𝗾𝘂𝗲𝘀, 𝗹𝗲𝘀 𝗣𝗮𝗿𝗮𝗹𝘆𝗺𝗽𝗶𝗾𝘂𝗲𝘀 𝗲𝘁 𝗺𝗮𝗶𝗻𝘁𝗲𝗻𝗮𝗻𝘁 𝗹𝗲𝘀 𝗣𝗔𝗘𝗠𝗼𝗹𝘆𝗺𝗽𝗶𝗾𝘂𝗲𝘀! Le mois de mai est le mois de la sensibilisation à l’encéphalomyélite myalgique (EM). Pour l’occasion, l’AQEM présente une série à saveur olympique qui représente les défis des personnes atteintes d’EM (PAEM). 𝗖𝗼𝘂𝗿𝘀𝗲 𝗮̀ 𝗼𝗯𝘀𝘁𝗮𝗰𝗹𝗲𝘀 - 𝗢𝗯𝘁𝗲𝗻𝗶𝗿 𝘂𝗻𝗲 𝗿𝗲𝗻𝘁𝗲 𝗱’𝗶𝗻𝘃𝗮𝗹𝗶𝗱𝗶𝘁𝗲́ 𝗥𝗥𝗤 Faire la demande de rente d’invalidité RRQ est une véritable course à obstacles qui se fait au prix d’efforts cognitifs considérables. Elle entraîne du découragement en plus de conséquences invalidantes dues à l’effort trop grand exigé pour y parvenir. L’encéphalomyélite myalgique (EM) est une maladie dévastatrice, chronique et complexe qui handicape tous les aspects de la vie. L’EM touche des enfants, des ados et des adultes de tous âges et de tous milieux. Pourtant, les personnes atteintes de l’encéphalomyélite myalgique (PAEM) accomplissent des exploits tous les jours. 👉 Surveillez les prochaines publications de cette campagne de sensibilisation à l’EM et partagez SVP avec votre entourage ! Cette publication contient du texte alternatif. Conception et illustration par CMGouin | cmgouin.com https://aqem.ca/ #MECFSAwareness #MECFSAwarenessDay2024 #MillionsMissing #MillionsMissing2024 #EncephalomyeliteMyalgique #EMSFC #paEM #pwME #MyalgicEncephalomyelitis #MECFS #SyndromeFatigueChronique #SFC #ChronicFatigueSyndrome #CFS #parlonsEM #MaladieChronique #ChronicIllness #CovidLongue #CovidLong #LongCovid #JeuxOlympiques #OlympicGames #JeuxOlympiques2024 #Olympics2024 #OlympicGames2024 #OlympicGamesParis2024 #JeuxOlympiquesParis2024 #JeuxParalympiques #ParalympicGames #PAEMOlympiques
One infection was all it took to change my life for good. I had to give up everything just to survive between 4 walls. No doctor could help me...😔 It took years of misdiagnoses, gaslighting and medical traumas before one doctor finally looked further than the inadequate regular tests. There are so many people going through the same battle. ME needs to be treated like the complex neurological condition it is. It starts with raising awareness and spreading the right information. Tomorrow, may 12th, is M.E. awareness day. Please share this and help raise awareness for the #millionsmissing due to #ME. People who can't live the life they want to, people who don't have a voice anymore...😔 Be a voice for them! #globalvoiceforme ME facts: 1) ME is often triggered by infections like Ebv, lyme, covid,... Since corona, the numbers are only rising even more. 2) ME is a complex multi systemic neuroimmune disease with a range of symptoms. 3) Post exertional malaise ( #PEM, crashing after physical and mental activities) can be severely disabling. 4) There is no cure or effective treatment. 5) ME can be incredibly isolating 6) Many doctors don't even know what ME is. 😓 We deserve care and understanding and not years of gaslighting and medical traumas! We need to keep fighting for funding and research. But mainly we must continue to educate doctors, so all the current patients can get the care they need and deserve They shouldn't have to suffer in silence! Where is the compassion for all these patients? It's inhumane ! #TeachMETreatME . Together we can me a difference !💙 . . Pic credit designer Stijn De Boeck Text: @lifeprettysick . . . #mecfswarrior #mecfsawareness #mecfsbelgie #meaction #myalgicencephalomyelitis #pwME #meawareness #learnfromme #goblueforme #livingdeath #postviral #longhauler #longhaulfight #ebv #chroniclyme #chronicfatigue #alwaystired #painwarrior #chronicpain #chronicillnesswarrior #chronicallyill #disabledlife #invisibledisability #invisibleillness
ME Awareness Day 2024 (featuring my blue #汉服 and N95 because it’s #APAHM and Covid is not over) One year ago, I posted about my experience with “moderate” ME/CFS that was quickly worsening to a severe level. Today, I no longer meet the diagnostic criteria for this highly stigmatized, painful, and contested illness. I still have energy limits (more forgiving, but they need protection nonetheless). Being #bedbound for months on end is an experience I will not easily forget. Statistically, only 5% of pwME recover. There is still no FDA-approved cure, treatment, or even biomarker test. Any level of ME, even “mild,” is a severe reduction of functioning. The hallmark symptom is PEM/PENE, post exertional neuroimmune exhaustion. I hope that this #MEAwarenessDay, you take some time to learn about the #MillionsMissing and how to be an #AllyForME. Make sure to include #SevereME perspectives in your advocacy, since they are the most likely to be left out of conversations that favor those of us with more spoons. This is not going to be a very lengthy post, because I’ve been working with my team @mutualaidforme on setting up a ME Awareness Month #MutualAid Drive! Because as much as we need research for helpful treatments, #pwME need support NOW to survive with this illness. Please comment, share, and donate to support our comrades from the ME and Long Covid communities. linktr.ee/mutualaidforme IG: @mutualaidforme Alt text included. Background image description: Gloria (me) is standing on a rock facing the ocean and horizon. They have short black hair, wear a turquoise ear strap mask, and wear traditional Chinese clothing, or hanfu. It’s light blue and green and looks coordinated with the landscape! Tags: #NEISVoid #TeachMETreatME #MEAwareness2024 #GoBlueForME #hanfu #mamianqun #LongCovid #WearAMask #spoonie #ChronicIllness #ChronicFatigue #cfs #MyalgicE #MyalgicEncephalomyelitis #MedicalGaslighting #tcm #qi #qigong #fatigue #PEM #StopRestPace
Read Dave Olsen’s story: Finding hope & purpose living with ME/CFS in Japan: link in bio! "I realized something was wrong when my brain started to “check out” and I was getting lost and disoriented just blocks from my house despite being a world traveler. It turned out that I was ill with ME/CFS. Now, ten years later – after hundreds of medical appointments, tracking down specialists and programs of every possible kind, I’ve lost everything from my career, to my support system, self-worth, and hobbies. Despite all the loss I have suffered over the past decade, I've managed to rebuild my life in Japan with my wonderful wife and adorable 2-1/2-year-old son. Navigating life with ME/CFS in Japan has had its challenges. While there is a growing recognition of ME/CFS in Japan, I hope that sharing my story will encourage more understanding and foster better communication." #PwME #Millionsmissing #mecfs #longcovid #myalgice
Read Dave Olsen’s story: Finding hope & purpose living with ME/CFS in Japan: link in bio! "I realized something was wrong when my brain started to “check out” and I was getting lost and disoriented just blocks from my house despite being a world traveler. It turned out that I was ill with ME/CFS. Now, ten years later – after hundreds of medical appointments, tracking down specialists and programs of every possible kind, I’ve lost everything from my career, to my support system, self-worth, and hobbies. Despite all the loss I have suffered over the past decade, I've managed to rebuild my life in Japan with my wonderful wife and adorable 2-1/2-year-old son. Navigating life with ME/CFS in Japan has had its challenges. While there is a growing recognition of ME/CFS in Japan, I hope that sharing my story will encourage more understanding and foster better communication." #PwME #Millionsmissing #mecfs #longcovid #myalgice
@liegenddemo in Frankfurt Wir waren heute zur #LiegendDemo in Frankfurt, um auf #mecfs aufmerksam zu machen. Lt @carmenscheibenbogen waren 2023 bis zu 800.000 Menschen alleine in Deutschland erkrankt. Erkrankt an #mecfs. Eine schwere Multisystemische Erkrankung ohne zugelassene Therapien und Medikamente. Selbst mild betroffen, verliert man 50% seiner Leistungsfähigkeit. Medizinern ist #mecfs meist nicht bekannt, das Leitmerkmal #PEM häufig belächelt. Wir fordern Aufklärung der Gesellschaft und im medizinischen Sektor, sowie langfristig gesicherte finanzielle Forschung. Zugang zum sozialen Versorgungssystem und Anerkennung der schwere der Behinderung, die die Erkrankung verursacht. Unterstützung bekamen wir heute von @nadinegersbergmdl und @stefanieminkley. Ich bin überzeugt, zwei starke Frauen, die sich für uns in Hessen einsetzen werden. Auch @manuelrudolph121 machte sich vor Ort einen Eindruck. Danke an alle, die den Tag heute möglich gemacht haben- vor und hinter den Kulissen. Stellvertretend DANKE an @wea_anja_sticher @francesha @iris.dorr.9 @krombizombi Renate Birte ! #TeachMETreatME #mecfs #mecfskids #MeAwarenesshour #Longcovid #longcovidkids #pwME #MillionsMissing #MyalgicE #spoonie #neisvoid #MemesForME #endmecfs2021 #myalgicencephalomyelitis #lightupthenightforme #Lightupthenight4ME #worldmeday #globalvoiceforme @karl_lauterbach_mdb @dieschmidt @danielacsommer @alexanderkrey.muehlheim @clauskaminsky @manuel.friedrich.obertshausen @ines.claus
Tom Kindlon shared the radio talk on Twitter. Thank you Tom Recording of 21-minute Cape Talk Radio interview this morning: Bettie Hough who lives with ME & Chair of ME & Long Covid Unite SA & Prof Resia Pretorius primediaplus.com/2024/05/11/int… Some text extracts are also at the link #MEcfs #CFS #PwME #May12 #May12th @thisisSJKing @Radio702 https://x.com/tomkindlon/status/1789342644063055878?s=61&t=rCFd3aIBegSnALp9_RNTGg
What you see and what you don't Even in the first picture, you can't tell that we almost left before the event even began because I was dizzy, nauseous, weak, and short of breath just from sitting in my wheelchair. My heart rare was 30 beats per minute higher than it should have been just from attempting (and failing) to wear a mask because I am immuno-compromised and an infection could have severe consequences. Picture 2- a tiny part of the aftermath. 14 hours of tumultuous, delirious sleep later… Too weak to lift my mug, even with two hands. Too weak to open my eyes, lift my head or sit up for even a moment without multiple pillows holding all of my weight. PEM crashes leave me fighting for consciousness, struggling to breathe, unable to think clearly, or walk a few steps without clutching at walls/furniture/people while I move at an excruciating, yet glacial pace. The toll for attempting life can be days or weeks and realistically, I'll be paying the cost for this week for the rest of the month (Though I am so grateful to have been part of incredible events alongside truly inspiring people). The hardest part of explaining ME is that you will only ever see me at my best (and even then, faking my way through), so you will never know what most of life looks or feels like. The other hardest part is that ME is forever so I have to hold on to hope while also making peace with the fact that I may never get to act again, or hold a job, or leave the house without a wheelchair and hours, if not days, of radical rest before and after. Only 5% of people are lucky enough to experience remission and the rest will, at best, have half the level of functioning they had before ME. Even that 50% comes at a steep cost. I’m not at 50%, but I am grateful for where I am and I hope we get to see 50% someday. Or, even better, that we will get a cure. But for now, thank you for reading, for asking questions, for sharing posts, for helping with the day to day survival so I can still be part of the world. Join us tomorrow for #GoBlueforMECFS #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #disability #MEAwarenessWeek #MillionsMissing #MECFSAwareness
Due paginette informative belle chiare sulla ME/Cfs, così arrivate preparatə per la giornata mondiale domani, 12 maggio, che interrogo! 😜 (Volantino disponibile in altre lingue al link qui sotto) ————- Two clearly written pages about ME/Cfs so you can become knowledgeable by tomorrow, 12May, international ME/Cfs day. I’m going to test you! 😜 (Handout available in more languages at the link below). https://worldmealliance.org/2023/04/new-factsheet-on-me-available-in-multiple-languages-for-world-me-day/ #MECFS #mecfsawareness #mecfswarrior #pwME #MyalgicEncephalomyelitis #MillionsMissing
Respecter les besoins et les limites de chacun est essentiel, surtout lorsqu'il s'agit de soutenir une personne malade. 🌟 Il est facile de tomber dans le piège de penser savoir ce qui est le mieux pour elle, mais en réalité, personne ne comprend ses propres besoins mieux qu'elle-même. 🌿 Dans ce post, je souhaite mettre en avant l'importance de l'empathie et du respect dans le soutien aux personnes malades. 🤍 Laissons de côté les jugements et soyons là pour elles, en écoutant attentivement et en ajustant nos attitudes en conséquence. 💕 #EM #EMSFC #EMCFS #Encephalomyelitemyalgique #MEAwareness #Sensibilisation #Famille #Amis #Connaissance #Respect #Empathie #Soutien #comprehension #Maladie #Maladiechronique #Maladieinvalidante #Invisibleillness #pwme
@mylongwalkforme är nu ute på sin tredje timme springandes. Jag ligger inne bakom mörkläggningssgardinerna och försöker samla kraft för att kunna heja på hans insats. Han springer för oss ME-sjuk, för dom som inte kan. Samtidigt som han samlar in pengar till ME-forskningen. Enklaste sättet som du kan bidra är att swisha till 0721-879187. Pengarna går sen oavkortat till @openmedf forskning! Varje liten krona kan göra skillnad! ~•~•~•~•~•~•~•~•~•~•~• #mecfs #mecfsawareness #mecfssweden #chronicillness #chronicpain #chronicillnesslife #myalgicencephalomyelitis #pwme #millionmissing #spoonie #butyoudontlooksick #kronisktsjuk #pem #svMECFS #mecfsfighter #spoonielife #invisibleillnessawareness #closetoME #kronisksmärta #canyouseemenow #walkwithME #walkwithMECFS #supportME #mylongwalkforme
Sketching a wee hedgehog I'd previously painted a Red Squirrel and Blue Tit on wood slices, needed a third in the series to complete a set. Decided to sketch out this little hedgehog. Coming soon... #sketching #pencildrawing #hedgehog #britishanimals #graphite #pwme #craftymissb #cuteanimals Pic description, close up of a pencil sketch on lined paper.
Thank you @lisagroothaar for starting #BedInForPalestine ! I would love to join physical protests, but since I’m unable to do so, I decided to make this a permanent post on my grid. 🍉🍉🍉 #FreePalestine #MEAwarenessDay2024
Some sunny weekend ink & glitter play… . . . #FakeArt #FakeArtMovement #NotAnArtist #BeginnerArtist #Learning #ArtTherapy #ArtTherapyHeals #ArtTherapyLife #CopingMechanism #AlcoholInk #AlcoholInkPainting #AlcoholInkArt #AlcoholInkArtwork #AbstractArt #AbstractArtwork #FluidArt #ColorsMakeMeHappy #TRexInks @trexinks . #PwME #MECFS #MyalgicEncephalomyelitis #MillionsMissing #MadeInBed #PaintingFromBed #BedLife #SpoonieArtist #SpoonieArt #SpoonieLife #DisabledArtist
✨International ME Awareness Day Facts✨ With tomorrow being International #myalgicencephalomyelitisawareness Day, May 12th, I thought I would put together a few facts about the day itself. I feel it’s important for people to understand its origins, why it’s on that particular day and so forth. It’s not a big post just one #severeme sufferer doing her part. I hope you enjoy my Global Voice For ME picture at the end of the post too! 🤭🤭 Please do share around everyone, whether you’ve got #myalgicencephalomyelitis yourself or know someone who does. We desperately need the support and allies. Be a good #allyforme 🩵💙love and positive vibes🩵💙 #myalgicencephalomyelitisawareness #mecfs #mecfsawarenessday #mecfsawarness #mecfswarrior #mecfsfighter #mecfslife #mecfsblogger #chronicillness #chronicillnessawareness #chronicillnessadvocate #chronicillnessandme #chronicillnesslife #chronicillnesscommunity #bedbound #housebound #pwme #postexertionalmalaise #stoprestpace #pacing #weneedacure #research #funding #GlobalVoiceForME #millionsmissing #wedeservebetter #learnfromme
We're at Whitchurch car boot today where we will be donating a portion of the money towards my fundraiser. #charity #fundraiser #headshave #charityheadshave #dreadlockheadshave #tenyearolddreads #meassociation #ramsayresearchfund #carolinesdogrescue #carolinescaringacrossthecontinent #romaniandogrescue #justgiving #dreads #dreadlocks #dreadsofinstagram #dreadlocksofinstagram #dreadstagram #longdreads #dyeddreads #realhair #mecfs #myalgicencephelomyelitis #myalgicE #pwME #chronicillness #chronicfatigue #chronicpain #bristolcarboot
ME Awareness month. It's fair to say I view my ME diagnosis as little more than a death sentence without the death part. Extreme view? Try living with it. It's not until I found Me association that I got connected to other people like me. Exactly the same presentation, same symptoms, same experiences. I was saved. This group achieved what no GP, no friend or family could achieve....acceptance, acknowledgement but also hope. I was bedridden, crying, in pain, overwhelmed and if I'm honest, praying for a quick death. It's that bad. But with a very kind GP (following a complaint on my previous one), I was treated for my pain, offered sympathy and put in touch with South Coast Fatigue. Little by little I came back from the edge and began to look at what I could do. It's a huge massive adjustment but I did it. My family played a huge role in this. Xander cooked every night even though he had his own substantial health issues, Lewis stepped up and helped lil bro Christian with school and snacks, Shannon washed me, bathed me and did my hair and my husband made everything possible and brought me anything he could think of that might help. My parents were on the phone all the time listening to me sob and letting me know they love me. And my friends, Dawn, Suzanne and Jo especially keeping my spirits up and listening to me moan. I owe them all everything. Cue pup pups arrival after a year of languishing in bed and life became bearable. It's absolutely fair to say he has done miracles, you all have. Thank you for making life bearable. #meassociation #southcoastfatigue #familyfirst #cockaliersarebest #pwme #meawareness #friendsforever
𝗜𝗹 𝘆 𝗮 𝗹𝗲𝘀 𝗢𝗹𝘆𝗺𝗽𝗶𝗾𝘂𝗲𝘀, 𝗹𝗲𝘀 𝗣𝗮𝗿𝗮𝗹𝘆𝗺𝗽𝗶𝗾𝘂𝗲𝘀 𝗲𝘁 𝗺𝗮𝗶𝗻𝘁𝗲𝗻𝗮𝗻𝘁 𝗹𝗲𝘀 𝗣𝗔𝗘𝗠𝗼𝗹𝘆𝗺𝗽𝗶𝗾𝘂𝗲𝘀! Le mois de mai est le mois de la sensibilisation à l'encéphalomyélite myalgique (EM). Pour l'occasion, l'AQEM présente une série à saveur olympique qui représente les défis des personnes atteintes d'EM (PAEM). 𝗖𝗼𝘂𝗿𝘀𝗲 𝗮̀ 𝗼𝗯𝘀𝘁𝗮𝗰𝗹𝗲𝘀 - 𝗢𝗯𝘁𝗲𝗻𝗶𝗿 𝘂𝗻𝗲 𝗿𝗲𝗻𝘁𝗲 𝗱’𝗶𝗻𝘃𝗮𝗹𝗶𝗱𝗶𝘁𝗲́ 𝗥𝗥𝗤 Faire la demande de rente d’invalidité RRQ est une véritable course à obstacles qui se fait au prix d’efforts cognitifs considérables. Elle entraîne du découragement en plus de conséquences invalidantes dues à l’effort trop grand exigé pour y parvenir. L’encéphalomyélite myalgique (EM) est une maladie dévastatrice, chronique et complexe qui handicape tous les aspects de la vie. L'EM touche des enfants, des ados et des adultes de tous âges et de tous milieux. Pourtant, les personnes atteintes de l’encéphalomyélite myalgique (PAEM) accomplissent des exploits tous les jours. 👉 Surveillez les prochaines publications de cette campagne de sensibilisation à l’EM et partagez SVP avec votre entourage ! Cette publication contient du texte alternatif. Conception et illustration par @cmgouin | cmgouin.com https://aqem.ca/ #MECFSAwareness #MECFSAwarenessDay2024 #MillionsMissing #MillionsMissing2024 #EncephalomyeliteMyalgique #EMSFC #paEM #pwME #MyalgicEncephalomyelitis #MECFS #SyndromeFatigueChronique #SFC #ChronicFatigueSyndrome #CFS #parlonsEM #MaladieChronique #ChronicIllness #CovidLongue #CovidLong #LongCovid #JeuxOlympiques #OlympicGames #JeuxOlympiques2024 #Olympics2024 #OlympicGames2024 #OlympicGamesParis2024 #JeuxOlympiquesParis2024 #JeuxParalympiques #ParalympicGames #PAEMOlympiques
📍 Tomorrow is ME Awareness Day 12 May #meawareness #meawarenessday #pwME #myalgischeenzephalomyelitis #myalgicencephalomyelitis #mecfs #millionsmissing #meaction #severeME #spoonie #
New short film for ME Awareness Day‼️: Having #severeME and being homebound often feels like a prison. You're locked up in your home and your body, away from society, your loved ones, from the life you desperately yearn to live. Most years, I see maybe one or two people, and many years I didn't see anyone at all. I often get the question how do I get by and how do I get help, even though I don't really see or communicate with anyone. My health has somewhat stabilized since moving to a new and quiet place, and I can therefore do a bit more (hence the filming), but other than these changes, I'm still very much imprisoned by ME. So, like last year, I decided to document my life locked up in my home by ME to give a unique insight into my life with ME and how I spend the last year(s). I hope you'll enjoy watching it. There are subtitles in different languages included, and there will be more to follow. Don't forget to share! 🙏👍♥️ Link in the bio. Groetjes, Anil #MEawarenessMonth #MEawarenessWeek #MEawarenessday (which is tomorrow) #pwme #myalgicE #millionsmissing #severeME #photophobia #hyperacusis #POTS #spoonie #banPEM #art2cureME #beard #gayscruff #canyouseeMEnow #balletdancer #zorgbetervoorME #selfie #selfportrait #chronicillness #science #abyssinian #catsofinstagram #catsofholland #catdaddy #beardsandcats #nikonz6
Laatste aankondiging voor ME awareness day. Morgen, zondag, zal het NMCB consortium een tekst plaatsen in het teken van “educatie van de arts”, hierbij zullen Ruud Raijmakers en Brent Appelman benadrukken wat het belang hiervan is. Ook wordt verwezen naar het ‘Infoblad voor Behandelaren’ wat is gemaakt door de ME/cvs Vereniging, Steungroep en Me/cvs Nederland. Aansluitend zal ook PAN een bericht plaatsen over het infoblad voor behandelaren en het belang hiervan. Vanaf 13 mei zullen wij elke dag 1 patiënten verhaal delen om het patiënten perspectief nog eens te weergeven. #MeCvsVereniging #pwme #MEcvs
Laatste aankondiging voor ME awareness day. Morgen, zondag, zal het NMCB consortium een tekst plaatsen in het teken van “educatie van de arts”, hierbij zullen Ruud Raijmakers en Brent Appelman benadrukken wat het belang hiervan is. Ook wordt verwezen naar het ‘Infoblad voor Behandelaren’ wat is gemaakt door de ME/cvs Vereniging, Steungroep en Me/cvs Nederland. Aansluitend zal ook PAN een bericht plaatsen over het infoblad voor behandelaren en het belang hiervan. Vanaf 13 mei zullen wij elke dag 1 patiënten verhaal delen om het patiënten perspectief nog eens te weergeven. #MeCvsVereniging #pwme #MEcvs
~ 11 maj ~ ME-awarnessmonth ~ ”Räkna allt du har att vara tacksam för.” (Sofia Sivertsdotter) Livet med ME/CFS är inte alltid så lätt att förklara och jag kan förstå om det inte heller är så lätt för utomstående att förstå och ta in hur det verkligen är. Det är en för många av oss en långdragen, turbulent, tuff, jobbig, traumatisk resa innan vi får vår diagnos och innan vi förhoppningsvis får den hjälp och behandling vi behöver. Om ni följt inläggen och händelserna i mitt flöde, eller någon annans, så förstår ni att vi har förlorat mycket av vårt tidigare liv, våra aktiviteter, sociala umgänge, arbete, funktioner, intressen….Livet sätts på sin spets, man hamnar i kris och en krisreaktion. Det är en sorg att ta sig igenom att livet så radikalt förändras, att kroppen inte längre fungerar som tidigare, alla förluster. Vad man inte får glömma är dock att livet inte tar slut, vi har fortfarande saker vi kan göra och saker vi uppskattar, allt utifrån varje enskilds förmåga och mående. Jag tror att de flesta av oss blir väldigt bra på att ta fasta på och värdesätta just de tillfällen och de stunder då vi faktiskt mår så bra att vi orkar delta, orkar ta den lilla stunden ute i trädgården eller naturen, följa med på ett evenemang, träffa vänner om än bara för en kort stund, orkar läsa eller lyssna på en bok, handarbeta, skriva….Allt det som förut togs för givet men som nu är något vi är tacksamma för de stunder det fungerar. 💙🙏🏻💙 Jag värdesätter mina korta stunder ute i friska luften tillsammans med mina trogna följeslagare oerhört mycket 🐾🐾. Vi strosar sakta fram, stannar, lyssnar, tittar, tar en klunk kaffe, fortsätter, vänder hemåt och sedan vila. I never walk alone 🐾🐾❤️ #pwme #meawarenessmonth #mecfs #mecfswarrior
Zoals je in de afbeeldingen hebt gelezen zoekt Mevrouw W. (84) contact met lotgenoten met ME/cvs. Hieronder nog een keer haar oproepje: Mevrouw Maria W. is 84 jaar en eigenlijk al vanaf haar 30e ziek. Ze voelt zich de laatste tijd eenzaam en wil graag contact met iemand die snapt wat het is om ME te hebben. Mevrouw is ondanks haar leeftijd nog jong van geest en leeftijd is voor haar verder niet belangrijk bij contact met lotgenoten. Ze heeft altijd genoten van uitstapjes en een brede interesse voor allerlei zaken. Ze heeft ook altijd geschilderd, maar dat lukt nu niet meer en dat vindt ze een groot gemis. Ze kan haar handen nog moeilijk gebruiken en daarom zoekt ze telefonisch contact. Wil je reageren op deze oproep van Mevrouw Maria W.? Stuur ons dan een berichtje via onze website (link in bio). Dan geven we je het telefoonnummer door. Zelf een oproepje plaatsen kan ook via onze website: https://me-cvsvereniging.nl/oproep-lotgenotencontact/ #MEcvs #lotgenotencontact #contact #lotgenoten #oproepje #mecvsvereniging #luisterendoor #erkenning #MeCvsVereniging #pwme #MEcvs
There’s just over one week to go until our virtual Tea Party for M.E. and here’s everything you need to know to join! ☕️ The Tea Party for M.E. is an annual international event that has raised over £100,000 since 2013 for ME charities and research worldwide, and this year we’re holding our own virtual Lit-tea-rary Tea Party to support people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in NZ. The idea is to take an hour out of your day to rest, read, drink your hot drink of choice, and eat something yummy, while donating the price you’d expect to pay in a cafe to our Givealittle page. You can join us anytime on Sunday 19th May, or choose a time before then - whatever suits you! We want everyone with ME/CFS to see that they’re not alone or forgotten, so share what you’re reading online with the hashtags #litteararyteaparty, #teapartyforME2024 and #booksforlessnz so others can join the virtual reading/tea party too. Our Givealittle page is live now, and if you want to join or donate early, that can help us get more traction with givealittle, making it visible to people who don’t already follow us and hopefully increasing the impact that our Lit-Tea-Rary Party can have. Every dollar donated will be added to our monthly fundraising total at the end of the month and donated to NZ ME/CFS charities. So help us reach our fundraising goal of $300 and help support an amazing global campaign to support people with ME/CFS.
Vilka är då Open Medicine Foundation (OMF) som @teamwalkwithME samlar in pengar till? OMF en ideell organisation som samlat in mer än 50 miljoner dollar för att finansiera forskningssamarbeten. OMF samlar världsberömda forskare för att studera, diagnostisera, behandla och bota bla. ME/CFS, Parkinson och long covid . De jobbar med att förstå sjukdomsmekanismer, definiera diagnoskriterier, hitta effektiva behandlingar samt att bredda tillgången till kvalitetsvård. 59 studier har finansierats av OMF sedan starten 2012. Vid Uppsala universitet finns ett av OMFs forskningscentra som leds av Dr Jonas Bergquist. Uppsala universitet söker ME/CFS-biomarkörer för att utveckla ett diagnostiskt test och för att bidra till förståelsen av vad som sätter igång sjukdomsprocessen. Dr Bergquist och hans labb utvecklar nya metoder för att extrahera patientprover och mäta metaboliter och proteiner i dessa prover. All information är hämtad från @openmedf hemsida, OMF.ngo Mer information om insamlingen finns i ett 📌 inlägg i min profil. Där hittar du också länk till själva insamlingen! ~•~•~•~•~•~•~•~•~•~•~• #mecfs #mecfsawareness #mecfssweden #chronicillness #chronicpain #chronicillnesslife #myalgicencephalomyelitis #pwme #millionmissing #spoonie #butyoudontlooksick #kronisktsjuk #pem #svMECFS #mecfsfighter #spoonielife #invisibleillnessawareness #closetoME #kronisksmärta #canyouseemenow #walkwithME #walkwithMECFS #supportME #mylongwalkforme
May is ME/CFS awareness month. One of biggest gifts you can give someone who is chronically ill is to learn about their condition. This is one of mine. We need support. We need awareness. We need research. We need respect. We need to be believed. #MEawarenessmonth #MEAwareness #TeachMETreatME #MillionsMissing #pwME #goblueformecfs
May is ME/CFS awareness month. One of biggest gifts you can give someone who is chronically ill is to learn about their condition. This is one of mine. We need support. We need awareness. We need research. We need respect. We need to be believed. #MEawarenessmonth #MEAwareness #TeachMETreatME #MillionsMissing #pwME #goblueformecfs
#WorldMEDay #LearnFromME #MyalgicEncephalomyelitis #pwME #nzmecfsawareness #nzlongcovidsupport #nzlongcovid #towardswellness #mecfsawareness #longcovidkids #longcovidsupport #longcovid #AwarenessProject #GlobalVoiceForME #MEAwareness #learnfrommenz #WorldMEDay #InternationalMEAwarenessMonth #LearnFromME #missingmillions #MECFS, #EMSFC, #MECVS
#WorldMEDay #LearnFromME #MyalgicEncephalomyelitis #pwME #nzmecfsawareness #nzlongcovidsupport #nzlongcovid #towardswellness #mecfsawareness #longcovidkids #longcovidsupport #longcovid #AwarenessProject #GlobalVoiceForME #MEAwareness #learnfrommenz #WorldMEDay #InternationalMEAwarenessMonth #LearnFromME #missingmillions #MECFS, #EMSFC, #MECVS
We can’t believe GO BLUE is already here! Let’s turn social media blue together tomorrow and tell the world why 🩵 Be sure to tag @goblueformecfs in your post if you’d like it shared to our Instagram stories tomorrow. We will try to share as many tagged posts as we can and save them to the “Go Blue 2024” Reels on our page. **Please be aware that Instagram privacy settings mean we won't see your posts if your account is private (even if you tag @goblueformecfs in them). Just something to know when you’re creating your May 12th post. ** Need help with your post? Visit the toolkit link in our bio for signs, a blurb, infographics, and more to help create an impactful post. Swipe right to see some examples of what you’ll find in there! Let’s do this! 🩵🩵🩵 Access: this post features ALT text . . . . . . . . . . #GoBlueForMECFS #GoBlueForME #GoBlueForACure #MECFSAwarenessDay #StillSickStillFighting #GOBlueForME2024 #CanYouSeeMeNow #MyalgicEncephalomyelitis #MECFS #LongHaulers #LongHaulersCovid19 #LongHaulersStrong #LongCovidKids #LongHaulersUnite #PostViral #ChronicIlness #ChronicIllnessAwareness #Disability #PWME #MyalgicE #MillionsMissing2024 #CFSME #NEISvoid #MyalgicEncephalimyelitisAwareness #MEAwarnessMonth2024 #MEAwarenessDay2024 #MillionsMissing, #MEAwarenessMonth #TeachMETreatME
#WorldMEDay #LearnFromME #MyalgicEncephalomyelitis #pwME #nzmecfsawareness #nzlongcovidsupport #nzlongcovid #towardswellness #mecfsawareness #longcovidkids #longcovidsupport #longcovid #AwarenessProject #GlobalVoiceForME #MEAwareness #learnfrommenz #WorldMEDay #InternationalMEAwarenessMonth #LearnFromME #missingmillions #MECFS, #EMSFC, #MECVS
US centric stats - but they are similar world wide. The prevalence of myalgic encephalomyelitis and chronic fatigue syndrome is estimated at 17-24 million worldwide (me-pedia.org) with an additional 65 million or more with long covid (as of 2023). And these numbers continue to rise with 10-20% of covid cases resulting in long covid (https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)00493-2/fulltext) #MEAction @meactnet #TeachMETreatME #MillionsMissing #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #MedEd #spoonie #ChronicIllness #MEAction #disability #longCovid
Dear Community, We want to share a heartfelt video with you titled "Recognize ME." This powerful piece, delivered by Doctor of Physical Therapy Clayton Powers, recognizes myalgic encephalomyelitis (ME/CFS), a condition often misunderstood and overlooked despite its profound impact on millions worldwide. The video delves into the daily struggles faced by individuals battling ME/CFS or post-COVID related ME/CFS, emphasizing the immense challenges posed by extreme and all consuming fatigue, metabolic, neurologic, and immune impairments, to name a few. *link in stories ME/CFS ranks lower in terms of quality of life compared to major diseases like cancer, stroke, and debilitating autoimmune conditions. Yet, it's a condition that's unrecognized by many and often misdiagnosed or dismissed. We want you to know that you are not alone in this fight. Your experiences are valid, and your voices matter. If you're living with ME/CFS, remember that your symptoms are not a result of laziness or deconditioning. It's crucial to listen to your body and prioritize self-care, even when faced with disbelief or skepticism from others. And if you know someone battling ME/CFS or long COVID, consider sharing this message and supporting the Bateman Horne Center of Excellence, as we engage in clinical research, equip medical providers with knowledge and care management tools, offer support and resources to caregivers and the community, and advocate for systemic change. You are valued, and your experiences deserve recognition and support. Let's come together, raise awareness, and work towards accurate understanding and informed care for the ME/CFS community. With empathy and solidarity, Team BHC ***We extend a special thank you to @openmedf for their generous support of our Medical Education Resource Center. #MECFSAwareness #MyalgicEncephalomyelitis #ChronicIllnessSucks #ChronicIllnessSupport #pwME #LongCovid #MECFS #ChronicFatigue #AutoImmune #ChronicIllness #MedicalEducation #POTS #InterstitialCystitis #Lupus #ThinkingOfYou #Disability #Hope #SickAndTired #mecfswarrior #QualityofLife #Lyme #FibromyalgiaPain #PEM #DPT #Overlooked #InvisibleIllness #SeeTheUnseen #RecognizeME
Today, @donoharmbc joined @millionsmissingbc in solidarity for a demonstration demanding adequate treatment and awareness for Long Covid & its sister illness ME/CFS. A large group of people (including journalists) turned out at @davidebybc’s Vancouver office, with many more folks joining via livestream. Although the event organizers invited Premier Eby to meet with them at the event, his office chose to close instead. His staff can look forward to finding a torrent of letters in their mail slot when they return, with messages from people across the province. If you didn’t catch the event in realtime, you can find the livestream video on @millionsmissingbc’s Facebook page. And remember - you can continue to demand safe, adequate treatment in BC through @donoharmbc’s campaigns to ensure Paxlovid access, and to restore masks to healthcare 😷 [Image descriptions pinned. Alt text embedded]
Thanks to one of our members, Kieran Warden, who created this and shared this publicly online today.
We recently asked our community what myths they wanted to debunk, and this is what they shared. What would you add to this list? ID: ME/CFS is NOT... Debunking myths about Myalgic Encephalomyelitis ME/CFS is not just fatigue or tiredness. Fatigue is just one of many symptoms associated with ME, but the hallmark of ME is post-exertional malaise (PEM), where symptoms worsen after minimal mental or physical exertion. ME/CFS is not the same as chronic fatigue. Chronic fatigue is a symptom of ME, as well as other conditions like hypothyroidism or anemia. ME is a chronic, complex, multisystemic condition characterized by post-exertional malaise. ME/CFS is not the same for everyone. ME can range from mild to severe/very severe. The 25% of people with severe or very severe ME may be homebound or bedbound and experience severe sensory sensitivity, among other debilitating symptoms. #Vitassium #MECFS #MECFSAwareness #MECFSWarrior #pwme #PEM #MyalgicEncphalomyelitis #MEAwareness #MillionsMissing #LongCovid #ChronicIllness #ChronicIllnessWarrior #Spoonie #SpoonieLife #InvisibleIllness #ChronicFatigueSyndrome #cfs #cfsme
Tonsillitis! AGAIN!!! #MECFS #PWME #Spoonies #LongCovid #DisabilityAwareness #MillionsMissing #MyalgicEncephalomyelitis #MyalgicEncephalomyeltitisAwareness #MyalgicEncephalomyelitisWarrior #ChronicIllness #ChronicIllnessWarrior #ChronicIllnessAwareness #ChronicPain #ChronicFatigue #Awareness #Understanding #UnderstandingME #AppropriateTreatment
Now is the time to share your #MillionsMissing #teachMETreatME photos, videos, or artwork - now through May 12th. #WorldMEday Links in our bio! Here is some sample language you can use in a share in case it is helpful. It works for allies too! We need our allies to share! And sharing your own photo or video is best but we offer graphics if you need them: https://drive.google.com/drive/folders/19kCfTs6665aIAop7PyhbhGCDRSnt1RAV?usp=drive_link SAMPLE POST: 👇 Myalgic encephalomyelitis (ME, aka ME/CFS) is not being taught to healthcare providers. They cannot diagnose and treat ME without that knowledge. Millions of people are going without care but we can change that. Please ask your healthcare providers to take this CME. Sample language to copy and paste is at the end of this post. I am joining #MEAction’s #TeachMETreatME campaign so that (Fill in the blank - I. my neighbor, my parent, etc) can get the care they(or I) and the millions like them (or me) deserve. SAMPLE LANGUAGE TO CLINICIAN: 👇 I’m reaching out to you because there is a CME that really deserves your attention. May is national myalgic encephalomyelitis (ME, or ME/CFS) month! Approximately half of people with Long COVID meet the diagnostic criteria for ME/CFS, so it’s more vital than ever to know how to diagnose and manage this common illness. Mayo Clinic Rochester clinicians and the Scientific Director at MEAction, a nonprofit for people with infection-associated chronic illness, created this Concise Clinical Review in Mayo Clinic Proceedings, with an associated one-credit CME. Would you be willing to take the CME and share it with your colleagues? It would mean a lot to me and patients like me! View the paper and take the CME here: https://bit.ly/MayoCME8 #PwME #MyalgicEncephalomyelitis #MECFS #LongCovid #MedEd ID: Simple text graphic with black background and white letters along with the #TeachMETreatME logo. Text: I am joining #MEAction’s Teach ME Treat ME campaign this #MillionsMissing so that the millions of people living with myalgic encephalomyelitis (aka ME or ME/CFS) can receive the care they deserve.
💜🕊️💜 Putting aside the law of attraction for a moment, imagine you choose to pay more attention to the positives in life. Even if that didn’t have an energetic influence on the universe, it would result in you feeling happier (ask anyone who’s ever written a gratitude journal). If you were feeling happier you’d be nicer to be around. If you paid less attention to the horrors in the world you’d feel less fear. If you felt less fear you’d be very likely to spread more goodwill amongst those you come into contact with. People who come into contact with you would feel more relaxed and it could ripple out from there. 🕊️💜 🕊️ Can you think of any examples of the positive ripple effect of being careful with what you pay attention to? Please tell... #MECFSThriver #MECFS #livingwithmecfs #spoonielife #mecfslife #positivespoonie #chroniclife #chronicillnesslife #spooniepurpose #mefibro #invisibleillnessadvocate #cfsme #mindsetshift #Spoonie #lifeofpurpose #holisticwellness #pwme #thriving
Dieses Jahr ist die #LiegendDemo in Würzburg am 11.05.24 von 13 – 16 Uhr am Domvorplatz. Komm gerne vorbei! 😊 Dich erwarten ein Infostand, Liveübertragung der Berliner Demo und das Liegen von 14 – 14:15 Uhr. Hilfe beim Aufbau wird ab 12 Uhr gebraucht. Den Livestream und weitere Informationen findest du bei @liegenddemo . Mehr Informationen findest du in unserer Cloud über den Link in unserem Profil. #MECFS #Selbsthilfegruppe #Würzburg #PostCovid #LongCovid #PostVac #LiegendDemo #Demonstration #LightUpTheNight4ME #Versorgung #Forschung #Anerkennung #MEAwarenessDay #ChronischKrank #Belastungsintoleranz #PEM #MECFSAwareness #MyalgischeEnzephalomyelitis #severeME #pwME #LebenMitBehinderung #Infektionsschutz #Prävention #Inklusion Dir gefallen unsere Beiträge? Dann unterstütze uns durch ❤ Liken, 💬 Kommentieren, 📣 Teilen & 🥳 Folgen
This is so appreciated! Please keep me going as we head towards #mecfsawarenessday on Sunday. Share on #threads and #facebook , message to a friend - it's all so helpful in getting my voice out there! #goblueformecfs #goblueforacure #mecfsawarenessmonth #mecfs #millionsmissing #pwme #disabled
Clematis After 8 days in a flare up, I was happy to go outside and see this beauty. This climber loves a show and when these die back, a golden honeysuckle takes it's place. It's lovely to see the garden come back to life after Winter. #clematis #climber #gardentherapy #pwme Picture shows a white clematis flower
✨You Are Not Your Illness✨ A little reminder today for anybody who needs it, including myself. You are not your illness, It is only part of you & You are amazing! Sometimes I feel like my #myalgicencephalomyelitis and other #chronicillnesses take over me and swallow up the person that I am. They’ve already taken the person that was. I don’t feel like I am in a fight with my #chronicillness just more trying to find the space to live with them. I am a person. I am a mother. I am a wife. I am a crafter. I am a creator. I am funny, creative, caring and weird. I am amazing. I am strong. I am a nurturer. I am a friend. I am a warrior and I am a survivor. I Am Me. Even if that’s a new kind of me, that’s okay. So if you needed this reminder today - I am with you. I see you. 🩵💙love and positive vibes🩵💙 #reminder #iseeyou #iam #iamnotmyillness #chronicillnessawareness #chronicillnessandme #chronicillnesswarrior #chronicillnesslife #chronicillnesscommunity #myalgicencephalomyelitisawareness #mecfs #mecfsfighter #mecfslife #mecfswarrior #severeme #pwme #fibromyalgia #fibromyalgiajourney #fibrowarrior #hiddenillness #stillsick #sickandtiredofbeingsickandtired #disabled #disabledinstagram #disabilityawareness #weareinthistogether #spooniesupport
9th May • Couldn’t find my favourite hat to had to rock this exclusive little number. Wolverton Manor Garden Fair committee ?2014? #EmbroideryDiary #EmbroideryJournal #Glimmers #pwME
Ni som vet ni vet 🙂↕️🙏 #mecfs #pwME #millionsmissing #livskvalitet #rme #2haveME #myalgicencephalomyelitis #chronicillness #chronicfatigue #chronicfatiguesyndrome #me_cfs #meworrior #chasinghealth #invisibleillness #MElife #spoonie #spoonielife #chronicfatiguewarrior #mewarrior #mecfsfighter #mecfsrecovery #millionsmissingsweden #mecfssverige #omf #hope #LevaMedME #LomudalGI #MCAS
Third hyperbaric oxygen treatment. It is $400 for five dives (treatments). It usually takes 90 minutes each dive (an hour and a half). The hyperbaric chamber is labeled as a Vitaeris 320. It is a soft-shell chamber that goes to about 4.6 - 4.8 ATA. I had to see a doctor and be screened before starting treatments and accept the possible risks: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/complications-of-hyperbaric-oxygen-treatment I think it’s helping as a part of my multi treatment regiment. I am not as exhausted this week, I am able to wake up. I am not sleeping more than 12 hours a day. I am not in pain the way I am normally after activity. My theory on why it works for myalgic encephalomyelitis is that it decreases the amount of lactic acid and ketone buildup. Previously, I heard from other myalgic E sufferers that to achieve remission I would have to use a hard shell hyperbaric treatment at 5.0 ATA, five days a week for five months. And that it is only a temporary remission, that the symptoms of myalgic E return after 2 months… unless you keep going back to do more hyperbaric treatments. But a friend with myalgic E went for soft shell 2-3 times a week and said it still helped her. I can’t function with myalgic E, and living with it is torture, so I decided to try. #hyperbaric #hyperbaricoxygen #hyperbaricoxygenchamber #vitaeris320 #hyperbaricoxygentherapy #treatments #treatment #Myalgicencephalomyelitis #longcovid #MECFS #fatigue #postviral #spoonie #chronicillness #chronicfatiguesyndrome #ME #CFS #LC #millionsmissing #pwME #MyalgicE
(Clickable link in bio) This is a full-page article in the Galway Advertiser this week. It followed our press release. Thanks to Marie Curran for once again telling her story. Can be read for free here: https://www.advertiser.ie/galway/article/141445/the-woman-who-refuses-to-be-beaten-by-me (Clickable link in bio) @galwayadvertiser
Our monthly advocacy meeting is coming up! We will meet next Monday, May 13 at 4:30 PM ET via Zoom. Message us for the link! Join us to discuss our plans for #MillionsMissing week. Our advocacy meetings occur on the second Monday of each month at 4:30 PM, so if you can't make this one, stay tuned for future meetings! We welcome new and experienced advocates, people with ME, Long Covid, related chronic conditions, caregivers, nondisabled allies, as well as those who are undiagnosed in Maine, Vermont, and New Hampshire. If your state does not yet have an #MEAction chapter, you're welcome to join ours to get involved. Alt text will be posted as a comment below. Tags: #ChronicIllness #mecfs #mecfsawareness #PatientAdvocacy #DisabilityAwareness #DisabilityRights #MedicalEducation #LongCovid #CovidIsNotOver #PwME #MyalgicE #Longhaulers #CovidLonghaulers #Dysautonomia #POTSSyndrome #EhlersDanlos #EhlersDanlosSyndrome #MCAS
Hi. It's been a while. Since spring 2022 I've slowly been getting worse. After a very mild Covid infection I never got back to normal and trying to get better led to me getting worse. In August -23 I was diagnosed with Myalgic Encephalomyelitis or ME/CFS. I have mild ME. That means my brain and body now works on about half of the capacity of the healthy version of me. I work 20 hrs each week, and spend the rest of my time resting, doing rehab, and trying to recharge. Emphasis on trying. There is almost never energy left for friends and family or any type of social activities. Screens make me nauseous. My brain often can't filter light so everything is brighter than it should be and it takes a lot out of me to decide what information is relevant. I'm in different kinds of pain most of the time. My nervous system can't handle normal stuff like regulating heart rate and digestion anymore. My heart rate can go up to 120 BPM just from standing up to quickly. And I am one of the lucky ones. Most people with ME/CFS are a lot worse off. My goal is not to get well, but to avoid getting worse. There is no cure. There are a lot of theories about how and why, but the need for research about ME and related illnesses like Long Covid is enormous. You can support this by signing up as a healthy control for studies by Open Medicine Foundation. @openmedf https://www.omf.ngo . . . #pwME #MECFS #MillionsMissing #MyalgicEncephalomyelitis #GoBlueForME #CronicFatigue #CronicFatigueSyndrome #POTS
Julia shares, "I'm missing travel. Millions are missing from active lives because of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Here's me in 1997, a few months before I got sick. For the past 15 years, there are no more photos of me standing up." Individuals like Julia are the motivation behind our momentum. Please support OMF's annual #MayMomentum campaign today so the millions suffering can return to living the healthy lives they deserve: link in bio #pwME #MECFS #LongCOVID
Julia shares, "I'm missing travel. Millions are missing from active lives because of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Here's me in 1997, a few months before I got sick. For the past 15 years, there are no more photos of me standing up." Individuals like Julia are the motivation behind our momentum. Please support OMFCA's annual #MayMomentum campaign today so the millions suffering can return to living the healthy lives they deserve: link in bio #pwME #MECFS #LongCOVID
No mês internacional de conscientização da Encefalomielite Miálgica acontecem diversos eventos pelo mundo com o intuito de compartilhar os avanços científicos, estimular o investimento em pesquisa e políticas públicas voltadas para o tema. Dessa forma, eu e a @dra.eloara decidimos fazer uma live para compartilharmos informações e tirarmos algumas dúvidas sobre o tema. Você é o nosso convidado especial para esse momento único de troca. #fadiga #pwME #MillionsMissing
2023 erstrahlten für die Aktion #LightUpTheNight4ME in Würzburg die Brückenheiligen an der Alten Mainbrücke und das Käppele am internationalen ME/CFS-Tag blau. Dieses Jahr haben laut Angaben von @lightupthenight4me bereits 216 öffentliche Gebäude/Objekte in Deutschland und Österreich zugesagt, um mit der Beleuchtung auf die schwere neuroimmunologische Erkrankung ME/CFS aufmerksam zu machen. Ihr könnt selbst mitmachen, indem ihr eure Fenster am 12.5. abends blau beleuchtet. Mehr Bilder seht ihr direkt bei @lightupthenight4me . Über welche Beleuchtung hast du dich bei #LightUpTheNight4ME 2023 am meisten gefreut? Mehr Informationen findest du in unserer Cloud über den Link in unserem Profil. Foto: © Matthias Lotzen B! Das Foto ist bei Nacht auf der Mainbrücke in Würzburg aufgenommen worden. Im Vordergrund und im Hintergrund ist jeweils eine der Statuen der Brückenheiligen blau angestrahlt. #MECFS #Selbsthilfegruppe #Würzburg #PostCovid #LongCovid #PostVac #LiegendDemo #Demonstration #LightUpTheNight4ME #Versorgung #Forschung #Anerkennung #MEAwarenessDay #ChronischKrank #Belastungsintoleranz #PEM #MECFSAwareness #MyalgischeEnzephalomyelitis #severeME #pwME #LebenMitBehinderung #Infektionsschutz #Prävention #Inklusion Dir gefallen unsere Beiträge? Dann unterstütze uns durch ❤️ Liken, 💬 Kommentieren, 📣 Teilen & 🥳 Folgen.
We are working hard to ensure that myalgic encephalomyelitis (ME aka ME/CFS) is taught to medical students and through continuing medical education for clinicians. We call this campaign - #TeachMETreatME. It all begins with a simple step. Share an article with a CME (continuing medical education credit) with your healthcare providers. Sample messaging is provided. Will you join me in ensuring we Teach M.E. and Treat M.E.? Sample messaging: https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit?usp=sharing Learn more at milionsmissing.org. #pwME #MyalgicEncephalomyelitis #MECFS #WorldMEday #chronicIllness #MillionsMissing #May #stillSickStillFighting ID: Ben HsuBorger (white man with brown hair and beard) wearing a red tee holding a sign that says Teach ME Treat ME 2024 #MillionsMissing.
Ik deed weer lekker een rondje. Het weer is perfect! Ik ging ook midden op een grasveld liggen, met spelende kinderen op de achtergrond, maar daar hoorde ik lekker niks van. Ik ben toch zo blij met deze koptelefoon ☺️. Kan m iedereen aanraden die overprikkeld raakt door geluid 👍🏼. #wandelen #noicecancellingheadphones #sony #happyface #hiitsme #selfie #alotofselfies #sorrynotsorry #kijkdatblijekoppie #genieten #noicesensitive #overprikkeling #longcovid #pwme #mecvs
Having significant chronic illness PEM today. Eugh. It’s thrown me as I didn’t see it coming. So it’s a day in bed lying down today but I’m managing to do a bit of cross stitch from a gift I was given at Christmas! Love cross stitch haven’t done any for ages and it’s cheering up a dreary day! Here’s to ibuprofen and drumstick squashies! #chronicillness #chronicfatigue #pwmecfs #pwcfs #pwme #myalgicencephalomyelitis #meawareness #crossstitch #chroniccrafter #embroideryfloss #sewersofinstagram #sewersgonnasew
… Let me preface this by saying 3 things: -An individual must be in a position where their body is able to properly respond to new or increased stimuli in order to benefit from movement, meaning they cannot be in the midst of a significant crash. However, if someone has been resting hard for weeks and months but getting worse, then deconditioning is likely starting to play a role in symptom severity. -I’m not talking about traditional exercise here. ‘Movement’ can be as small as one needs it to be in order to respect their body’s limits. 2-3 micro movements done lying down in bed still counts! -I’m also not encouraging anyone to intentionally trigger PEM. Gently pushing the upper end of one’s current limits is different than blatantly pushing past those limits. With that said, how does avoiding movement actually result in PEM being triggered more easily? First, the threshold at which PEM (post-exertional malaise) is triggered directly correlates to an individual’s aerobic efficiency. The greater aerobic efficiency, the greater tolerance for activity and stress of any kind. The longer we go without movement, the less efficient we become. While deconditioning is not the cause of the illness, this is where it starts to have a significant and direct impact on overall capacity. Second, avoiding activity for long periods of time means that there will be a greater mental and physical stress response once we start to do that thing again. Combined with lower aerobic efficiency, this makes it much harder to start adding or expanding activity without significant repercussions. The bottom line- It is imperative to figure out what we can do right now, despite the symptoms, even if that looks quite different than what we may have done in the past. Start small, remove the ‘all or nothing’ mindset, be willing to experiment, and figure out what works for you. If you’re having trouble figuring things out on your own, then 1:1 Coaching might be a good option to get you moving safely, comfortably, and consistently. Link in bio for more details.
This #WorldMEDay, we are supporting the @worldmealliance in becoming a #GlobalVoiceForME. To improve understanding of ME across the globe, the World ME Alliance have a FREE factsheet on ME. It’s a valuable resource for anyone looking to learn more about ME and its associated symptoms. The factsheet is available to read, print, download and share in several languages, and an easy-read format in English, available on their website. #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
Lee McGill (Department of Health & Social Care) joined the Research Working Group today to share an update on the Delivery Plan. We were pleased to hear there has been considerable work happening in the background to process the extremely high level of qualitative data and feedback received and took a long time to process. Lee reassured us that the final plan will be forthcoming and the aim is to publish it in the Autumn. #pwME #MECFS #MyalgicE #DHSC #DeliveryPlan
Anders Rosén, Linköping Universitet, berättar hur vissa virus som ligger vilande i cellerna kan återaktiveras i kroppen efter ex. ett fysiskt trauma. #mecfs #millionsmissing #PwME #livetmedmecfs