@goblueformecfs We’ll be sharing some quote graphics leading up to GO BLUE on May 12th, International ME/CFS Awareness Day 🩵 Feel free to add any of these to your GO BLUE post. All quote graphics will be available in our toolkit as we share them (linktree in bio). “I don’t care who solves this. I just know that it can be solved using good reasoning and good experiments. There’s something broken here and I know we can fix it.” Dr. Ron Davis, Professor of Biochemistry and Genetics, and Director of the Standford Genome Technology Center at Standford University, Director of the Scientific Advisory Board at the Open Medicine Foundation. The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son (2021). 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
The Times: “People with ME have been ignored for far too long. Sir Sajid Javid “For decades, patients have been routinely dismissed. Families were told that their loved ones suffered from a psychological condition or “yuppie flu”. I already knew about this condition before I was appointed health secretary, due to the painful experience of a family member. “Then, as we battled the pandemic, the emergence of long Covid brought renewed public attention because of the similar symptoms. That is why I announced two years ago a radical new approach to combating this condition. It would focus on diagnosis, research and care, and produce the first cross-government strategy on ME. Two years later, it remains unpublished. “This Sunday, #WorldMEDay, is an opportunity to refocus minds on how much more needs to be done. To read in full click the link in the bio > Latest News or use the QR code #MECFS #LongCovid #MyalgicEncephalomyelitis
M.E AWARENESS EXHIBITION AND EVENT. Yesterday we were joined by Daisy Cooper MP, we hope we represented our M.E GROUP family and raised some issues. One of our members daughter did an interview for radio which will share when done. Amazing creative work from our members which speaks for itself. The exhibition is on till the 15th May in the Assembly room in St Albans Museum & Gallery with out main event this Sunday 12th from 11am. Flyer in pics. #daisycoooer #museum #gallery #stalbans #mecfs #fibromyalgia #longcovid #campaign #meawareness #longcovid
The #longcovid Groups received a reply from Maria Caulfield MP We are very disappointed at her approach and would like to emphasise that: 📌Extensions to projects is not equivalent to more funding 📌”Existing funding routes” are inadequate for a brand new disease 📌Her assertion that “Between the UKRI and NIHR, there are funding opportunities to cover the breadth and depth of the research needs for long COVID” is simply not the case 📌Very unfortunate that she chose to highlight the REGAIN study which has been widely criticised 📌A website does NOT equal public messaging, the new @nhs__uk page on Long Covid provides scant advice 📌In reality, Long Covid is being largely ignored by government Read Maria Caulfield’s letter in full 🔗 in bio #longcovid #longcovidrecovery #longcovidsymptoms #longcovidawareness #longcovidkids #longcovidresearch #longcovid19 #longcovidsos #longcovidsyndrome #longcovidreasearch #longcovidtreatment #longcovidcommunity #researchlongcovid #treatlongcovid #countlongcovid #study #research #science #help #life #charity #reality #livingwithlongcovid #mecfs #chronicillness
#liegenddemo #mecfs #fatigue 1️⃣1️⃣.0️⃣5️⃣. - 1️⃣3️⃣-1️⃣6️⃣ Uhr in Berlin 🕐🚉 Washingtonplatz, am HBF, Spree-Seite Romy ist eine von vielen Betroffenen, die nicht gesehen, nicht behandelt, oft auch nicht ernst genommen werden. So ist es umso schwieriger, offizielle Unterstützung zu bekommen. Wie sollen sie damit alleine zurechtkommen, wenn jeder Schritt unendlich mühsam und kräftezehrend ist? Um Aufmerksamkeit zu bekommen und aufzuklären demonstrieren wir morgen -liegend- am Berliner Hauptbahnhof. Mehr Infos 👉@liegenddemo
Wir stellen in den Termin-Highlights Veranstaltungen und Initiativen unserer Kooperationspartner, Mitstreiter und Freunde vor! 🤝🎉 Was Euch erwartet – auf einen Blick. 👀 Hast Du etwas, das wir teilen sollten? Dann schick es uns! 📩 Hilf uns, mehr Menschen zu erreichen. 🌍💪 Wir freuen uns wenn: 💾 Du den Beitrag abspeicherst ↗️ Du den Beitrag teilst ❤️ Du uns ein Like dalässt oder Deine Gedanken in den Kommentaren mit uns teilst. Vielen Dank, Dein Patientenstimme Team #patientenstimme #mecfs #mecfsawareness #mecfswarrior #mecfsfighter #solidarität @liegenddemo @oeg_mecfs @unitetofight2024
Sorgen är inte linjär, inte logisk, inte förutsägbar. Den kan drabba en när som helst i varierande styrka. I bland är sorgen hanterbar, ibland är den outhärdlig och man tar sig igenom den ett andetag i taget. Behöver du stöd i din sorg efter sjukdom så kontakta sjukvården eller gå in på mind.se så finns flera hjälpnummer. Du är inte ensam 💙 ~•~•~•~•~•~•~•~•~•~•~• #mecfs #mecfsawareness #mecfssweden #chronicillness #chronicpain #chronicillnesslife #myalgicencephalomyelitis #pwme #millionmissing #spoonie #butyoudontlooksick #kronisktsjuk #pem #svMECFS #mecfsfighter #spoonielife #invisibleillnessawareness #closetoME #kronisksmärta #canyouseemenow #walkwithME #walkwithMECFS #supportME #mylongwalkforme
Good Morning Good Morning Happy #FaceToFaceFriday. Hope everyone is ok and pain free as possible. I'm doing OK! The heat is making me suffer a bit thanks to heat intolerance and being on SSRI meds (just a daily remainder to drink plenty and add an electrolyte if you are on any SSRI meds) my fatigue especially if flaring! I'm so glad it's Friday and I can get home and do absolutely nothing as right now I'm in spoon saving mode ahead of our trip to Brighton! #FaceToFace #MECFS #CFSME #FridayFeeling #SSRI #Sertraline #Friyay
https://gofund.me/655b38d3 Heute mal in anderer Sache als Mandalas #gofundme #hilfe #spendenaktion #mecfs #krankheit #behandlung #gemeinsamstark #staytogether #freundschaft #füreinengutenzweck #füreinengutenmenschen
Der Mai ist voll von Aktivitäten und es gibt Menschen bei denen, fällt mir meine Abwesenheit besonders schwer. Ich schwanke immer so extrem zwischen Vernunft und Unvernunft. Ich wünschte ich könnte besser auf mich achten. #chronischkrank #neinsagen #mecfs
Empathy means acknowledging a vast horizon of context that exists beyond you. It’s a learned skill but something we’re all capable of. [ALT TXT PROVIDED] #disabilityrights #disabilityjustice #disabilityinclusion #disabilitypride #mastcellactivationsyndrome #sickandtiredofbeingsickandtired #disabledlife
#mecfs #chronicillness #mecfscommunity #myalgiskencefalomyelit #chronicfatiguesyndrome #mecfssverige #kronisktsjuk #millionsmissing #chronicfatigue #spoonielife #cfs #butyoudontlooksick #sjuk #chronicillnesswarrior #mecfswarrior #mecfsawareness #disability #sjukdom #livetmedme #me #mecfsfighter #me #mentalhealth #mecfsproblems #autoimmunedisease #spoonies #postviral #dontforgetaboutme #pem #postextertionalmalaise #canyouseemenow
AKZEPTANZ Und der Mond der glotzt und schweigt Was soll er auch sonst tun Und ein Mensch sitzt still und sagt sich leis So ist das Leben ©️ Text/Bild: Gisbert zu Knyphausen / Verena Meyer Am 12. Mai ist MECFS-Awarness-Day und die Farbe der MECFS-Bewegung ist blau. Daher mache ich im Mai eine 'Blaupause'. Ich möchte damit nicht nur auf das Schicksal aller Betroffenen sondern auch auf die dringende Notwendigkeit von politischer, gesellschaftlicher und medizinischer Unterstützung in Bezug auf diese Erkrankung aufmerksam machen. #mecfsawareness #mecfs #goBlueForMECFS #mecfswarriors #mecfsawarenessday #mecfsawarenessmonth #mecfsartist #millionsmissing #LongCovid #schreibreisende #blaupause #mymy_madebymeyer #haeuserblog #blauestunde #akzeptanz #mond
#gibnichtauf #postvac #postcovid #fatique #pots #potsyndrom #nichtgenesen #postcovid #postcovid19 #longcovid #belastungsstörung #belastungsintoleranz #longcovidrecovery #pempatient #chronischkrank #mecfs #medizinwissen #gemeinsamstark #wirschaffendas #hoffnung #ich #erschöpfung #brainfog #covid #covi̇d19 #love #instagood #followme #seistark #millionsmissing
… … ACと人権問題を理解するための書籍 〜Vol.75−78 ・｢結婚の社会学〜"普通の結婚"なんてない / 阪井裕一郎｣ https://tinyurl.com/3sptjevs 日本が異常に生きづらい 原因のひとつに ｢伝統的な古い慣習に執着し改善する気がない｣ 国民精神があります ちょっとの物事を変えるのに 50年も100年もかかり その間、 それが原因で何人の人が死んでも無視 ｢人口は国力｣なので 国家は常に国民の 結婚/妊娠/出産 そしてその基盤である｢家族｣に 干渉支配してきました (というか｢家族｣を作ったのは国家です) この本から学ぶべき事のひとつは ｢常識｣を疑い 問題を個人の資質に矮小化せず 社会的/歴史的視点から見る事です ※※※※※※※※※※※ ・｢毒母は連鎖する 〜子どもを"所有物扱い"する母親たち / 旦木瑞穂｣ https://tinyurl.com/43vn9zde 当事者８人のライフヒストリー ｢全ての家族は絶対に美しいもの｣という 家族神話を信じるため こういう現実を 聴き、信じ、対応する人権意識は いまだ日本にはありません ちなみに ACや家族問題で ｢母と娘｣の例が 提示される事も多いですが 他の関係でもあります ※※※※※※※※※※※※※※※ ・｢占領下の女性たち 〜危機に際し女性を差し出す国に生きて / 平井和子｣ https://tinyurl.com/mrxsxvwj 戦後、政府が占領米軍兵士の為に作った ｢進駐軍向けRAA特殊慰安所｣や 満洲からの引揚げ時に ソ連兵に まさに"人身御供"として 差し出された女性たち そこには、国家⇨国民⇨女性という 上から下(強者から弱者)への 暴力支配の移譲がある ｢お国のため｣｢村民のため｣と 都合のいい事を言って強制し 危機が過ぎれば ｢汚れた｣というスティグマを貼り 差別/排除する卑劣な国民性 ※※※※※※※※※※※※※ ・｢歪な愛の倫理 〜"第三者"は暴力関係にどう応じるべきか / 小西真理子｣ https://tinyurl.com/3czj6sbh 虐待/DV/共依存などの関係から 逃れない人々の 現状や感情を知る (ある意味、特殊な内容なので ある程度知識のある人向けかも) ※※※※※※※※※※※※※ #人権 #アダルトチルドレン #AC #機能不全家族 #毒親 #虐待 #DV #ハラスメント #性被害 #性教育 #貧困 #宗教2世 #摂食障害 #依存症 #HSP #MECFS #中枢性過敏症候群 #難病 #ケアラー #きょうだい #ひきこもり #トラウマ #自助グループ #当事者会 #ACE #小児期逆境体験 #トラウマ #PTSD #CPTSD #フェミニズム #ジェンダー
Press Release, The National Institutes of Health In America, the National Institutes of Health (NIH) will launch clinical trials to investigate potential treatments for long-term symptoms after COVID-19 infection, including sleep disturbances, exercise intolerance and the worsening of symptoms following physical or mental exertion known as post-exertional malaise (PEM). The mid-stage trials, part of NIH’s Researching COVID to Enhance Recovery (RECOVER) Initiative, will join six other RECOVER studies currently enrolling participants across the United States testing treatments to address viral persistence, neurological symptoms, including cognitive dysfunction (like brain fog) and autonomic nervous system dysfunction. The new trials will enroll approximately 1,660 people across 50 study sites to investigate potential treatments for some of the most frequent and burdensome symptoms reported by people suffering from Long Covid. To read in full click the link in the bio > Latest News or use the QR code #MECFS #sleeptrials #COVID19
Unsere Leserin Renate hat uns per Direktnachricht auf die #LiegendDemo am 11. und 12. Mai aufmerksam gemacht. Dankeschön 💙! Als Betroffene vom chronischen Erschöpfungssyndrom hofft sie auf mehr Aufmerksamkeit. Während der Corona-Pandemie gab es etwas mehr davon. Renate hat uns geschrieben, dass es aktuell bundesweit lediglich zwei Anlaufstellen für Menschen mit ME/CFS gibt. Und das bei mehreren hunderttausend Betroffenen. Auch Menschen, die von Long- oder Post-Covid betroffen sind, kämpfen oft mit anhaltender Müdigkeit. Deswegen haben die Kolleg:innen von @ekhn.gemeinsam auf ihrer Website Tipps gesammelt. #MECFS #unitetofight2024 #MEcfsAwareness #ChronischeMüdigkeit #Erschöpfungssyndrom #Gesundheit #Awareness #Deutschland #Solidarität (Solidarität) #ZusammenStark #Patientenstimme #LongCovid #PostCovid #Hoffnung #ZusammenGegenMüdigkeit #indeontogo
#CRASH #danach #CovidIsNotOver #longcovidawareness #MECFS #atmen #alltag #kleineschritte #hängebauchschweinchen #cfs #symptome #heilung #leben #chronischkrank #postcovid #chronicfatiguesyndrom #fatigue #chronicfatigue #cfswarrior #longcovid #longcovidschweiz #longcoviddeutschland Kleine, große Schritte für Eine die stehenbleibt, und hofft dass sie nicht umfällt, die Sekunden zählt und atmet. Bis sie irgendwann weitergehen kann. Ohne das Hängebauchschweinchen unterm Mantel. . . . Mehr über mich und OhneAtemKeinLeben in den Highlights.
I can help run school mothers day stall (mask on) and sit at a cafe for a bit because I can live with the risk. How many of your friends aren't around lately (either by choice, or properly Gone)? We have plenty. #mecfs #covid #mentalhealth Anything you could do to protect people with pre existing conditions? Keep people with physical or mental challenges involved? Who's not sitting with you at the cafe any more? Bonus blue tongued lizard #millionsmissing #fegoa
Time to get up and face the day again We got this 💪 # - 📸 Source: @ aftertheflesh on TikTok (Dm for credit or removal / All rights® are reserved & belong to their respective owners) - 🛒𝗦𝗛𝗢𝗣 𝗡𝗢𝗪 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗠𝗬 𝗕𝗜𝗢 𝗪𝗼𝗿𝗹𝗱𝘄𝗶𝗱𝗲 𝗦𝗵𝗶𝗽𝗽𝗶𝗻𝗴🌎 - - - - #endometriosisawareness #chronicallyill #dysautonomia #fibrowarrior #gastroparesis #spoonies #chronicpainwarrior #chronicillnesswarrior #crps #raisingawareness #chronicfatiguesyndrome #mecfs #spooniestrong #chroniclyme #chronicpainawareness #painwarrior #youdontlooksick #chronicpainsucks #edsawareness #spooniesisters #fibromyalgiasucks #chronicwarrior #spooniecommunity #fibroflare #chronicillnesslife #spooniesunite
• #hackyoutube #heds #help #icloudbypass #icloudremoval #idrecovery #instagramers #instagramhackers #instagramhacking #instagramhelpcenter #instagramsupportgroup #irag #kentucky #keto #ketoaustralia #ketodiet #lchf #lchfdiet #lipedema #lipedemafighter #mecfs #mentalhealth #mentalillness #messi #metaverse #mobilityaid #new #newbeginning #newig #newinsta
🧪 Heal ME: Low-Dose Abilify (LDA) - Niedrig Dosiertes Abilify 📍 Eine ME OFF-LABEL BEHANDLUNG Der Post dient nur zur Information und Aufklärung und ist keine Behandlungsempfehlung! ME ist ein komplexes Krankheitsbild und immer noch nicht ausreichend erforscht, daher sind Off-Label Therapien immer auch mit einem gewissen Risiko verbunden, aber oftmals leider auch die einzige Möglichkeit, die bleibt, um eine potenzielle Verbesserung herbeizuführen. Nichtsdestotrotz sollte dies immer unter Anleitung und Aufsicht eines erfahrenen (ME) Arztes erfolgen. #abilify #LDA #lowdoseabilify #pwME #myalgischeenzephalomyelitis #myalgicencephalomyelitis #millionsmissing #spoonie #MECFS #CFS #meawareness
• #hackyoutube #heds #help #icloudbypass #icloudremoval #idrecovery #instagramers #instagramhackers #instagramhacking #instagramhelpcenter #instagramsupportgroup #irag #kentucky #keto #ketoaustralia #ketodiet #lchf #lchfdiet #lipedema #lipedemafighter #mecfs #mentalhealth #mentalillness #messi #metaverse #mobilityaid #new #newbeginning #newig #newinsta
17 days in Colorado meant I had plenty of days to just sleep 🛌 and still had some moments of real joy with beloved friends and family (and meeting @nancyramsdal a another ME/CFSer in real life!). The impetus for the trip was to support my dear friend and fellow ME/CFSer @auntiemegsdesign through cranial surgery. It was a success, and it was super difficult for her, and I was grateful to be able to be there for moral support. She has helped me along this difficult journey so much and although I try not to mention her too often to respect her privacy, I really really want everyone to know how wonderful she is. Even in through severe pain and anesthesia and meds, we find plenty to laugh together about, and I need reminding not to make her laugh quite yet😜. And being under the same roof with another person dealing with a lot of the same symptoms was so peaceful and centering. Truly felt restorative in my heart if not my body. Time with @leftylea & @heypamdavis was too short, but I got some quality tool organizing in and that’s something! Loved spending time with my niece @phoenix_locheart , sister @leslie_nope000 & brother in law @vbachert , learning about 8th grade tea and organizing my sisters dresser/jewelry. Saw some prairie dogs, was a solid trip. I’m grateful to everyone who took care of me along the way, traveling with chronic illness is no walk in the park. #mecfs #pots #eds #mcas #mecfswarriors #travelingwithmecfs
#scienze Naltrexone: Potenziale terapeutico per long COVID e ME/CFS http://dlvr.it/T6gQck #Salute #longcovid #MECFS #naltrexone #ricerca
𝑮𝒆𝒓𝒏 𝒕𝒆𝒊𝒍𝒆𝒏 📢 Einladung zum-Community-Call - jeden Freitag - DETAILS 👇 🕊️ Schließ dich uns freitags um 17:00 Uhr an, für unser wöchentliches gemeinsames Kerze Anzünden 🌟 Egal, ob du Bett-gebunden oder ans Haus gebunden bist oder einfach nur nach Verbindung suchst, du bist hier willkommen. 💙 Gemeinsam finden wir Kraft und Halt in der Gemeinschaft. #GemeinsamStattEinsam Wir freuen uns auf dich 🤗 👉 𝑾𝒂𝒏𝒏: jeden Freitag 17 Uhr 👉 𝑫𝒂𝒖𝒆𝒓: 10-15 Minuten. 👉𝑯𝒊𝒏𝒘𝒆𝒊𝒔𝒆: Die Mikros der Teilnehmenden bleiben stumm, um Reize zu minimieren. 👉 𝒁𝒊𝒆𝒍𝒈𝒓𝒖𝒑𝒑𝒆: chronisch Kranke, Betroffene von ME/CFS, Long/PostCovid, PostVac und chronisch Kranke, die Gemeinschaft suchen. Angehörige sind ebenfalls gern willkommen :) 👉 Was: Wir kommen online kurz zusammenkommen, zünden gemeinsam eine Kerze an und lauschen einem Impuls. Es ist eine christlich angehauchte Veranstaltung. Im Vordergrund steht die Gemeinschaft chronisch Kranker. Jede Glaubensrichtung & Weltanschauung ist herzlich willkommen. 👉 𝑴𝒆𝒆𝒕𝒊𝒏𝒈 𝑳𝒊𝒏𝒌: Internetbrowser öffnen, Link eintippen und los geht's, keine Registrierung; !! ohne 'www' und klein geschrieben !! 🔗 link.mecfs.space/lichtmomente 👉 𝑻𝒓𝒐𝒖𝒃𝒍𝒆𝒔𝒉𝒐𝒐𝒕𝒊𝒏𝒈: 1. Browser: Google Chrome & Microsoft Edge funktionieren am stabilsten 2. Schreibweise des Links mit den Hinweisen beachten 3. Nachricht an @mecfs.space (facebook/instagram) oder per Email (info(at)mecfs.space). Zusammen finden wir eine Lösung für dein technisches Problem. Wir freuen uns auf dich 🤗 @anni_conrad und @susanne_sunshineseeker Team Lichtmomente @mecfs.space PS: Mit Likes, Kommentaren und Teilen des Beitrages unterstützt du uns, mehr Menschen zu erreichen. 💙🕯️💙 !B Text der Einladung in heller und dunkler Schrift auf türkisem und dunkelbraunem Hintergrund. #mecfs #chronischkrank #myalgischeEnzephalomyelitis #longcovid #postvac #postvax #postcovid #fybromyalgie #pots #sfn #dubistnichtallein #communitysupport #zusammenhalt #mecfsAwareness #kleineAndacht #miniAndacht #reizarm #lichtmomente #barrierearmeAndacht #barrierearm
Beitrag zum ME/CFS Awareness Tag - was kann ich schreiben? Anregungen haben wir dir in Form von leicht kopierbaren Textbausteinen zusammengestellt. AKTIV WERDEN am 12. Mai - dem ME/CFS Awareness Day: Es wäre super, wenn du am 12. Mai einen Beitrag verfassen könntest. Gemeinsam erreichen wir mehr. Wir wissen aus eigener Erfahrung (Team ist selbst betroffen), dass die Konzentration oft zu gering und sonstige Symptome zu stark sind, um klar denken zu können. Daher haben wir uns etwas überlegt: Wir haben Vorlagen für euch erstellt: ✅ Bildvorlagen (siehe Instagram Story Hightlight "Vorlagen" @mecfs.space) ✅ Textbausteine (zum Rauskopieren auf unserer Link in Bio Seite) Die kleinen Textbausteine sind maximal 300 Zeichen lang. Du kannst sie kopieren, für deine Facebook / Instagram Beiträge frei verwenden und auch verändern, WIr freuen uns über Verlinkungen @mecfs.space. Was sagst du zu den Textbausteinen? Unnötig oder hilfreich? Gibt es Herausforderungen bei der Nutzung? Schreib dein Feedback gern in die Kommentare unten. Und falls du es hilfreich findest, teile es gern mit anderen. Und wenn du dann noch magst und Energie hast, schau gern in unsere 3-teilige Beitragsreihe "Aktionen rund um den ME/CFS Awareness Tag" an. Wir freuen uns auf euer Feedback, Team @mecfs.space ___________ #MEcfsAwarenessDay #MEAwareness #MEcfs #MyalgischeEnzephalomyelitis #PostCovid #LongCovidDeutschland #PostVac #MillionsMissing #NichtGenesen #chronischkrank #barriererfreiheit #barrierearmposten #LebenMitBehinderung #Anregungen #MEcfsInfos #MEcfsFakten #pwME #pwLC #May12
Not all beneficial gut bugs can just bounce back after a course of antibiotics. Antibiotics can cause long term permanent changes to our gut microbiome. Antibiotics can be lifesaving medicine, but more often than not we are using them to treat non-life threatening symptoms. As Functional and Integrative Medicine Practitioners we have an array of incredible herbal & nutritional medicines at our disposal that can support the body in times of infections. #mergehealth #functionalmedicine #guthealth #integrativemedicine #complexchronicillness #mouldillness #moldillness #toxicmold #breastimplantillness #bii #lymedisease #mecfs #chronicfatiguesyndrome #fatigue #CIRS #healthyhormones #detox #gutmicrobiomehealth #notoantibiotics #energymedicine #kinesiology #naturalfertility #holisticmentalhealth #healthcoaching #healthcoach #mergehealthcoach
#MyEDSChallenge Day 9 #TBT ✈️ If People Could Understand that These are Our Only Glorious Moments, they Would Hold Us Thighter - 📷ALL PICTURES BY @psicohisvetfernandez 📸 • #MillionsMissing • Si la Gente Comprendiera que estos son Nuestros Únicos Momentos de Gloria, Nos Sostendrían Muchi más Fuerte❤️🩹 🦓 •📷TODAS LAS FOTOS POR : @psicohisvetfernandez 📸 • • #enfermedadeshuerfanas #bullying #discrimination #humanrights #raredisease #forgetmenot #disabledartist #chronicpain #mecfs #myalgicencephalomyelitis #MastCellActivationSyndrome #hEDS #chronicillness #tetheredcordsyndrome #vascularcompressionsyndromes #ehlersdanlossyndrome #meawareness #faith #hope #love #dysautonomia #pots #zebrastrong #CCI #spinalcordinjury #spinabifida #Chiari
It’s #ME advocacy monthI Here’s a list for beloveds who ask “How can I support you and millions of other people with #MyalgicEncephalomyelitis #ME #MECFS and other #IACC (infection-associated chronic conditions) #POTS #LongCovid?” 1. @meactnet #MillionsMissing this year is #TeachMETreatME. Please help us expand the number of knowledgeable healthcare workers by sending clinicians this excellent resource from Mayo Clinical Proceedings titled ‘Diagnosis and Management of ME/CFS’. Visit their page for an email template. 2. USians: by May 10 call or email your representatives to ask them to include funding for LC + infection-associated chronic conditions in the FY25 budget. Follow @longcovidmoonshot for this and future legislative actions. They’ve created excellent & easy participation guides 3. @worldmealliance has been working on improving the World Health Organization’s engagement with #ME. You can help this month by sending a letter inviting your country’s WHO/PAHO representative to become a #GlobalVoiceForME. Search for your country on their page for details/ instructions. 4. Share information about #MyalgicEncephalomyelitis this month, and especially on May 12, #WorldMEDay. There’s many hashtags to share and amplify. Other hashtags to share and amplify: #MECFS #GoBlueForMECFS goblueformecfs and, for #SevereME, #ExposeMENow #DontLetMEDie. Stay tuned for #GreatestMEdicalScandal later this month. 5. Attend or spread the word about the joint #ME and #LongCovid mega-conference: #UniteToFight2024 @unitetofight2024 (It’s free, online, and full of amazing speakers from around the world) 6. Donate to an ME organization! One lovely way to do this is by joining #BlueSundayForME on May 19! As the project invites: “Dig out your best cups & saucers. Wear something blue. Have a slice of cake, or two. Donate the price you’d pay in a cafe to an ME charity. Post a photo of your little Tea Party for ME to social media.” @bluesundaycrew When you participate in any or many of these acts, please send me a message or post about it so I can send more joy and appreciation your way ❤
May is #mecfs Awareness Month. My younger child was diagnosed with ME/CFS age 11, following glandular fever age 9. So many people didn't believe that a child could get it, and there was nothing to explain to children what was happening, so I wrote '3...2...1...Done' as a way to raise awareness about ME/CFS in children. . I have tried to do a free ebook promotion, but for some reason KDP isn't cooperating! You can buy a copy from my website or Amazon - https://melissagijsbers.com/product/3-2-1-done/ - or request it in your local library. Help raise awareness of ME/CFS, and the fact that it's not something only grown ups get. . #mecfs #mecfsawareness #rubikscube
Oh hi from Okayama University Hospital, regrouping at Onsaya coffee before routine including many checkpoints here & then Kinnen Hospital, then pharmacy (need a lunch in between) #mecfs // #playoffbeard #ripAlbini
I’ve had a couple people say to me lately, “Man I wish someone would make me take a nap” in response to me mentioning my son napping. What they don’t realize is that I am forced to nap daily as well, forced to nap by illness, debilitating fatigue, and pain. I don’t have someone making me nap, but something. And there are many days that I wish that I didn’t have to take a nap and I could go on a walk instead or get some more work done or… any number of the activities inaccessible to me. With my disability this is not an option. Then there is my cat Rio that gets to nap whenever and wherever he wants. Nothing and no one is forcing him. He just goes with the rhythms of his body and it’s needs. That is another way for me to view my own naps, opening into what my body is asking for and being compassionate towards the fact it is differently abled than it used to be and than other people. It’s simply what is and by surrendering to that my pain is less, my suffering is lessened. May is ME/CFS awareness month - this is the name of the chronic illness I have. Learn more at @meactnet @solve_cfs #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #mecfsawareness #mecfs
#MEAction @meactnet #TeachMETreatME #MillionsMissing #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #MedEd #spoonie #ChronicIllness #MEAction #disability
NEW ON THE BLOG 👉 ’What is ME/CFS?’ My latest blog post is an essential guide to all things ME/CFS. Want to know more about the science behind this illness? The common signs and symptoms to look out for? Practical coping strategies I’ve developed after living with ME/CFS for 15 years? You’ll find answers to these questions in the new blog. Link in bio to start reading! #mecfsawareness #mecfs #chronicfatiguesyndrome #mecfswarrior #invisibleillnessawareness
Want to submit your message to @davidebybc? You have a couple hours left! We won't be ignored. Send us your message and we will include it along with all the other stories we have received in a letter to our politicians. #YVR #BCPoli #BCHealthCare #LongCovid #MECFS #MECFSAwareness #MillionsMissing #MillionsMissingVoices #MillionsMissingVoice #ChronicIllness
Blood tests. Being chronically ill means frequent blood tests. I see multiple specialists who all order different tests. #Myalgicencephalomyelitis #longcovid #MECFS #fatigue #postviral #spoonie #chronicillness #chronicfatiguesyndrome #ME #CFS #LC #millionsmissing #pwME #MyalgicE #blood #bloodtests #lab #labs
It NEVER ends. Chronic Illness never ends. I've been fighting to clear the highest of hurdles - allowing God to do all the work - to get the surgery I need. He has moved mountains and made a way. Tuesday I went for my pre-op appointment, and it made everything feel real. This thyroid nodule is going to be gone soon, and I'll be breathing easy in just a few more weeks. However, the pharmacist I met with said they would have to double check with my Rheumatologist about my Xeljanz. He said it's usually 3-5 days, but he wanted to confirm and would put in a call and let me know. I told him I was hoping for the 3 days because the one time I had to pause it, I was feeling it by day 2 and by day 3 had to restart to relieve my pain. Well, today, they left me a message saying I have to be off of it for 2 WEEKS prior to surgery. 🤯😳😭 I mean...I don't even know what I'm going to do. I have jobs scheduled in those 2 weeks. Yet now...now I might be bedridden and unable to do them. I'm self-employed and the only employee. I have no backup. This will be really bad to cancel on my clients. It will put them in a big bind and make me look bad. I'm scared, but I'm trying to stay calm. I'm doing my best to trust God through all the medical anxiety that is welling up in me. I went ahead and put my own call into my Rheumatologist to see if 2 weeks is absolutely necessary or if there is any room to reduce that time. I understand the science behind being off it leading to surgery. I just fear how bad I'll get without it for so long. Praying for strength.
News from a #TeachMETreatME event that happened recently! Jaime Seltzer, #MEAction's Director of Scientific & Medical Outreach, spoke at Quinnipiac University. =The university's Center for Interprofessional Healthcare Education hosted “Interprofessional Seminar: myalgic encephalomyelitis/chronic fatigue syndrome ME/CFS” on April 25 with students from medicine, physician assistant, athletic training – physical therapy, health sciences, nursing, occupational therapy and physical therapy. From the Center for Healthcare Education: "The faculty team: Professors Doyle, Grevelding, Lewis, Selinger, and Wescott based the seminar on the recent work published by the Mayo Clinic Proceedings (2023) focusing on the concept of post-exertion(al) malaise and the impact on all body systems and daily functioning. The highlight of the seminar was the voice of noted researcher Jaime Seltzer, a co-author of the Mayo Clinic Proceedings (article), who has ME/CFS. 95-100% of the student participants indicated that the seminar allowed them to identify the issues of ME/CFS related to stigma, non-restorative sleep as a symptom, and the impact of post exertion malaise on life." "Jaime Seltzer, (of) MEAction, was a powerful voice and advocate in her interview at the seminar. One student’s words summarized the opinions of the participants, “continuing to advocate for yourself as well as for your patients by truly listening to what they are telling you is your best diagnostic tool and will allow you to be patient-centered and interprofessional in providing care and best referrals to other professions.” Great to hear of the positive impact this campaign is making! #MillionsMisisng #pwME #MECFS #MyalgicEncephalomyelitis ID: Simple graphic with red frame and white background and text included in the post above.
I have to own a neck pillow. It can be used in so many positions when not needed for my neck. I sometimes just hold it and squeeze it when in pain. Mine has a small strap that connects with a snap. For my travels - like my recent cross-country road trip to see specialists - this can help to attach it to luggage or even keep it around your neck. I use it in the car sometimes too if not driving to help me sleep, especially when combating pain or motion sickness. The gray thing in the photo is a folded up pillowcase. That can be used in bed to help keep it clean. When I used to travel by plane I would take my travel neck pillow and wear it normally without it covered. Then, when I got to where I was staying I would put on the pillowcase to protect me from any ick picked up while traveling. This is definitely a thing this spoonie couldn't live without. #me #mecfs #myalgicencephelomyelitis #fibro #fibromyalgia #chronicpain #chronicillnesses #invisibleillness #rls #plmd #anxiety #depression #gerd #migraines #pem #postexertionmalaise #allodynia #costochondritis #autoimmunedisease #immunocompromised #disabled #invisibledisability #dynamicdisability #millionsmissing #spoonie #spooniesupport #spoonietips #butyoudontlooksick #itsnotinyourhead As always, there is alt text for the image.
FREE UPCOMING EVENT! MAY 17TH REGISTER NOW! Ask questions, get support. https://www.nourishtherapeuticyoga.com/products/special-events Gain insights into Dr. Eleanor Stein's comprehensive approach to assessing and managing Chronic Complex Conditions and explore the science of neuroplasticity. Discover the evidence-based benefits of therapeutic yoga with Shannon Williams, a certified yoga teacher. Taught from the lived experience of ME and Dysautonomia. Shannon's passion is adapting yoga to meet your body where it is at, in order to empower those with chronic health conditions to successfully participate without exacerbating their symptoms. #chronicpain #chronicillness #autoimmune #disability #raredisease #geneticdisorder #spoonie #spoonielife #spooniecommunity #spooniesupport #medicallife #medicallifestyle #joyandpain #chronicillnessawareness #chronicillnesses #chronicillnesssupport #chronicpainandfatigue #chronicpainwarrior #chronicpainawareness #mecfs #longcovid
#ME #MECFS #CFS #chronicfatiguesyndrome #chronicfatiguefighter #chronicfatigueawareness #chronicillness #chronicilllnesslife #chronic #MEAction #MEAwareness #MissingMillions #SevereME #ExposeME #invisibledisability #invisibleillnessawarness #invisibleillnesswarrior #invisiblepain #invisibledisabilityawareness #dynamicdisabilityawareness #dynamicdisabilities #dynamicdisability #chronicfatiguefighter #chronicillnesscommunity #chronicillnessproblems #chronicpainsurvivor #chronicillnessawareness #clinicallyulnerable #clinicallyulnerablefamilies #clinicallyvulnerablefamily #ClinicallyVulnerable
Just finished Rest Easy by @xsvengoechea (and the second Lord of the Rings) today and I have to strongly recommend it. As someone who does not enjoy slowing down, getting ME has forced me to learn how to stay still, and since I don’t want to be miserable all the time, I’ve been learning how to change “I have to rest” into “I get to rest”. Don’t get me wrong, I’m still an energizer bunny at heart, but learning to find joy in stillness has been an integral part of the journey for me. I read this one slowly over a few months to give myself time to think about each piece and will probably revisit a lot of the journaling activities and thought exercises later. Part of what I love about this book is it acknowledges barriers to rest, privilege, having to rest for chronic illness when when you don’t want too, and the importance of cultural and systemic change (and how resting is a counter cultural power move in a society that glamorizes productivity and work and demonizes rest as lazy and selfish). It’s funny because I thought a lot about illness and disability as I was reading The Two Towers - as Frodo becomes more and more exhausted, physically and emotionally, moving towards his goal, he becomes disabled by the ring. Yet there are so many memes and jokes about how Frodo does nothing, the rest of the party carries him, he just holds the ring while everyone else does all the work. Yet simply walking with the ring lays a burden on him beyond what the others have to contend with. LOtR has become my comfort audiobook listen when I’m too sick to do much and I find a lot of parallels between ME and Frodo’s burden which I didn’t expect to find, but I’m loving it. Currently in the middle of a few reads but my next big exciting one is Disability Intimacy edited by Alice Wong which has been an absolute banger so far. #MECFS #DisabilityLit #RadicalRest #LongCovid #ChronicIllness #Bookstagram
#matchingoutfits just chillin’ with my bird #mecfs #cfsme #chronicfatiguesyndrome #myalgicencephalomyelitis #pwme #mecfsawareness #morethantired #spoonie #spooniefamily #spoonielife #disabilityawareness #chickens #chickensofinstagram #chickensaspets #backyardchickens #pekins #pekinstagram
I've been getting a nice tan on my front side by lying on my zero gravity chair in the sunshine. Today i decided it was time to lie on my stomach in the sun, so i set up my old beach blanket and a wedge pillow on the deck. A few days before i started tanning this year, i had a dream in which my legs were fully tanned. It didn't feel like a prophetic dream at the time but I suspect it was, because this is the first time in a decade i have been able to tolerate the sun without having an allergic reaction. At the time of the dream, i didn't know I'd be able to tolerate getting a tan this year. This is the first time in a decade I'm not pasty white all over. As much as i tried to convince myself how much healthier my skin was by not getting any sun, i have to say, i feel a lot better with a bit of colour! . . . . . . . #PwME #MillionsMissing #MEcfs #MyalgicEncephalomyelitis #MCAS #InterstitialCystitis #OvarianCysts #POTS #CCI #AAI #hypermobility #hEDS #EhlersDanlosSyndrome #neurodivergent #AuDHD #BabeWithAMobilityAid
Thanks to @sarahiswolflarsen for giving us to permission to share! Are you ready for #WorldMEDay and to take action with #TeachMETreatME #MillionsMissing 2024? Sarah's caption: Getting ready for ME/CFS Awareness Day on May 12th, and inspired by Jaime Seltzer’s Rosie the Riveter post I give you: “We can....do it?” For those who don’t know, ME/CFS is one of the disabilities I live with and it’s a real life-crusher! But there are glimmers of hope on the horizon. The aforementioned Jaime Seltzer was just named one of @time Magazine’s 100 individuals who most influenced global health this year - along with three other experts in the fields of ME/CFS and Long Covid. This is a huge step forward. Medicine neglected ME/CFS for decades, refusing to acknowledge it as serious or even real - neglect that ruined my life, and millions of other people like me. But this is finally starting to change. Thanks to all of you for supporting me - readers, Wolf Larsen fans, friends - it is deeply appreciated. And thank you to @meactnet and the ME/CFS activist community for pushing so hard to make progress. We can do it! She said, flexing her bicep into a perfectly flat line. 😘 S . . . . . . #invisibledisability #chronicillness #MECFS #longcovid #wolflarsen Image description: Sarah Ramey / Wolf Larsen (white woman with short light brown hair, seated wearing overalls) shows off her red Still Sick Still Fighting t-shirt, flexing like Rosie the Riveter. Reposted from @sarahiswolflarsen
Being sick has taught me not to take things for granted anymore. I miss walking in the forest, listening to the birds and just soaking up nature. #chronicpainlife #chronicpainsucks #chronicpainwarrior #chronicpainawareness #mecfsfighter #mecfslife #mecfswarrior #mecfsawareness #mecfs #chronichealthchronicles #chronicillnessproblems #chronicillnesses #chronicillnesscommunity #chronicillnesssupport #chronicillnesslife #chronicillnesswarrior #chronicillnessawareness #chronicillness
???? but i would still love u if u were a worm tho 🫶💓🪱 - - - image description: lilac/grey background with black text that says “women ask the weirdest questions “would you still love me if i didn’t wear a mask?” … what? bitch no 🙄” #covid #covidisairborne #covidisntover #postcovid #longcovid #dysautonomia #pots #mecfs #disability #disabled “disabilityjustice #queer #gay #lgbtq #anarchist #mutualaid
I livelli di energia per una persona con la ME/CFS possono variare di giorno in giorno. Un giorno possono essere in grado di fare un po’ più del solito. Un altro giorno può essere che debbano rinunciare ai propri piani. Questo è difficile da prevedere. #mecfs #cfsme #meawareness #meawarenessmonth #worldmeday #globalvoiceforme #millionsmissing
#MECFSAwarenessDay #MECFS #InvisibleIllness #ChronicIllnessAwareness #mecfs #chronicillness #myalgicencephalomyelitis #chronicfatiguesyndrome #invisibleillness #fibromyalgia #chronicpain #chronicfatigue #mecfsawareness #disability #me #spooniesupport #chronicallyill #mentalhealth #longcovid #MECFSsuppor #MECFSCommunity #MECFSAwarenessDay #MECFS #InvisibleIllness #ChronicIllnessAwareness
今日は自転車用道路をお届けします😃 * 筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。 * #ブルーフォトチャレンジ #筋痛性脳脊髄炎 #笑顔の花びら集めたい #5月12日 #mecfs #bluephotochallenge
My three fluff bottoms #dogsofinstagram #dogstagram #dogsofinsta #supportdog #doglove #mecfs #cfsme #chronicfatiguesyndrome #myalgicencephalomyelitis #pwme #mecfsawareness #morethantired #spoonie #spooniefamily #spoonielife #disabilityawareness #chickens #chickensofinstagram #chickensaspets #backyardchickens #pekins #pekinstagram #silkies #silkiestagram
Life lessons from a chronically ill and disabled person • • • #chronicillness #longcovid #epilepsy #mecfs #seizureawareness #potssyndrome #potsawareness #autoimmunedisease #hashimotos #chronicfatigue #memoryloss #chronicfatigue #brainfog #dysautonomia #disability #disabled #chronicallyill #spoonie #dysautonomiaawareness #disabilityawareness #chronicillnessawareness #invisibleillness #wheelchairuser
We are looking forward to Millions Missing Vancouver 2024 tomorrow! Join us at noon outside Premier David Eby's community office at 2909 W Broadway. Can't make it in person? Our livestream will start on facebook just before 12:15 pm, emceed by the amazing @wandering! Hop over to our facebook page (Millions Missing BC) to watch the livestream from home. Some important reminders: ☀️ The forecast is sunny. Bring your waterbottle, hat, and any tools you need to manage the heat. 😷 Wear a mask. We have n95's on site if you don't have your own. 🚗 The office is located on a busy street. Please bring whatever tools you need to manage sensory issues. 👩🦼 Accessible parking is outside of our control on the public street. Arrive early if possible to find a space! 🛏 We’ll be pacing our event, with lots of breaks throughout. #MECFS #MECFSAwareness #MECFSWarrior #MillionsMissing #MillionsMissingVoices #MillionsMissingVoice #LongCovid #YVR #BCPoli #CanPoli #BCHealthCare
Non puoi giudicare quanto stia male una persona che soffre di ME/CFS sulla base del momento in cui la vedi. A meno che tu non sia con loro 24 ore su 24, 7 giorni su 7, non hai idea di quello che riescono a fare per il resto del tempo. #cfs #sostegnopsicologico #disturbineurologici #mecfs #sindromefaticacronica #meawarnessmonth #me
Misspell a medical condition in the comments and I’ll send you the link to Saturday’s spoonie watch party! 💬💻👀 It’s free to join this Saturday from 2-5 pm EDT. You’re welcome to join/leave/rejoin when it’s convenient for you. I’ll stream the show while we chat with other spoonies. Click “remind me” on this post to get a reminder before we go live! 🗓️ Hashtags incoming #chronicillnesshumor #spooniehumor #spoonie #spoonielife #spooniesupport #chronicillness #disabilty #virtualevents #virtualevent #disabledlife #chronicillnesslife #virtualfriends #watchparty #spoonies #virtualevents #accessibleevents #inclusiveevents #disabled #bedbound #bedboundlife #housebound #houseboundlife #chronicillness #chronicillnesssupport #longcovid #longhauler #longhaulers #immunocompromised #mecfs #meme #memes
May 9, 2024. Experiment Day 28. I am well enough to sit up with the lights on. Unfortunately, I had to close the door to the bedroom because for some reason my place is getting really humid. Closing the door seems to help a bit which my asthma-loving chest aporeciates. #me #mecfs #myalgicencephelomyelitis #fibro #fibromyalgia #chronicpain #chronicillnesses #invisibleillness #rls #plmd #anxiety #depression #gerd #migraines #migrainessuck #pem #postexertionmalaise #allodynia #costochondritis #autoimmunedisease #immunocompromised #disabled #invisibledisability #dynamicdisability #millionsmissing #spoonie #spooniesupport #butyoudontlooksick #itsnotinyourhead
Loved the @centraalmuseum in #utrecht today. Saw a wide range of #art from #artists linked to #utrecht in some way. I discovered #moesman which is an artist I need to research further. However the collection of pieces and work of #dickbruna nearly had me in tears. His work was so beautiful and obviously as many know I have a #miffy #tattoo and love Miffy so much. Seeing his desk and the typewriter at which he typed his #miffybooks was so special. #chronicillness #chronicpain #chronicfatigue #cfs #mecfs # #utrechtcity #spoonie #spoonielife #fibromyalgia #osteoarthritis #babewithamobilityaid #disability #disabledtravel #thenetherlands
I spend a lot of time having to rest and a great portion of that time my focus isn’t sharp enough to read and remember; or my fine motor skills aren’t quite “fine” enough for sketching or drawing. In order to do something productive that requires little brain power while I’m down, I’ve started visible mending/slow/sashiko stitching old work shirts for David. It’s meditative and quiet, doesn’t require concentration, and I can put it down when my hands get weak or shaky. On days when I feel better, I cut some old fabric scraps, choose some thread and tuck them into my new (old) mending basket along with a couple of shirts so it’s always ready to go. #artist #painter #chronicillness #chronicpain #chronicfatigue #invisibleillness #eds #edsawarenessmonth #pots #orthostatichypotension #bradycardia #dysautonomia #mecfs #chronicfatiguesyndrome #mcas #mastcelldisorder #arthritis #osteoarthritis #raynauds #mgus #monoclonalgammopathy #bloodcancer #spoonie #autismspectrumdisorder #glaucoma #visiblemending #slowstitching #sashiko #winthropadams #victoriawinthropadams
Another beautiful #dutch city ticked off the list today as we visited #utrecht. It’s a stunning city well worth the train ride!!!! I saw many many nods to the work of #dickbruna the artist behind #miffy. Amazing #architecture and #streetart too. It never ceases to amaze me how #thenetherlands totally embraces #art in all its forms. #chronicillness #chronicpain #chronicfatigue #cfs #mecfs # #utrechtcity #spoonie #spoonielife #fibromyalgia #osteoarthritis #babewithamobilityaid #disability #disabledtravel
This Sunday, May 12th, is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. Please 💙 wear blue 💙 to church this Sunday to support everyone struggling with this condition, especially Sophia Rose (17), granddaughter of Jamie and David Swink, whose Long Haul Covid has recently progressed into ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). Please also pray for Sophia and her family as they continue to learn more about her situation and how to help her. #mecfs #mecfsawareness . . . #mecfswarrior #mecfsrecovery #mecfslife #mecfsfighter #mecfsawarenessday #mecfsawarenessmonth #chilsonhills #chilsonhillschurch #howellmi #howellmichigan #brightonmi #brightonmichigan
I'm housebound and use a wheelchair for accompanied outings. My main symptom is fatigue. I can't drive, read books or exercise. #goblueformecfs for #mecfsawarenessmonth . Our official day is May 12th. Millions of us are missing due to this horrific illness and I'll be posting to raise awareness culminating in a reel about my experience on Sunday. #mecfsawarenessday #mecfs #millionsmissing #millionsmissing #goblueformecfs #goblueforacure #pwme #neisvoid #longmono #longhauler #disabled #disableddrag
It’s been so many years - 📸 Source: @ addeson.22 on TikTok (Dm for credit or removal / All rights® are reserved & belong to their respective owners) - 🛒𝗦𝗛𝗢𝗣 𝗡𝗢𝗪 𝗟𝗜𝗡𝗞 𝗜𝗡 𝗠𝗬 𝗕𝗜𝗢 𝗪𝗼𝗿𝗹𝗱𝘄𝗶𝗱𝗲 𝗦𝗵𝗶𝗽𝗽𝗶𝗻𝗴🌎 - - - - #mecfs #spooniestrong #brainfog #spreadawareness #invisibledisability #chronicdisease #spoonieproblems #fibrofighter #fibromyalgiaawareness #invisibleillnessawareness #fibromyalgiawarrior #potssyndrome #rawarrior #fibrofog #chronicpainlife #chronsdisease #chronicpainrelief #spooniefamily #chronickidneydisease #chroniclymedisease #meawareness #spooniemom #chronicbackpain #chronicillnessblogger #chronicpainsurvivor #chronicillnessmemes
With Mother’s Day coming up this weekend, I’ve been thinking about my own future, and the opportunities missed because of being a woman with chronic illness. I’ve written an article on Medium about my experience - link in bio. Can you relate? Join me on my journey @justpriyaofficial #motherhood #womenshealth #reproductivehealth #spoonie #chronicillness #mecfs #teachmetreatme #meaction #millionsmissing #disability Image Description: A large white square box with black text in it, set against a bright pink background. Black text lists information about the article, Let’s Talk About Mum and ME…Again, that has been published on the online Medium writing platform. The title is written in the centre, and the article is estimated to be a 14 minute read. At the bottom of the image is the author’s name, Priya Fernandes, her Medium profile photo, and Medium’s logo of three black round dots that are similar to an ellipsis. On the right side of the image, the link to Priya’s Medium profile is written and says medium.com/@JustPriyaOfficial.
With Mother’s Day coming up this weekend, I’ve been thinking about my own future, and the opportunities missed because of being a woman with chronic illness. I’ve written an article on Medium about my experience - link in bio. Can you relate? #motherhood #womenshealth #reproductivehealth #spoonie #chronicillness #mecfs #teachmetreatme #meaction #millionsmissing #disability Image Description: A large white square box with black text in it, set against a bright pink background. Black text lists information about the article, Let’s Talk About Mum and ME…Again, that has been published on the online Medium writing platform. The title is written in the centre, and the article is estimated to be a 14 minute read. At the bottom of the image is the author’s name, Priya Fernandes, her Medium profile photo, and Medium’s logo of three black round dots that are similar to an ellipsis. On the right side of the image, the link to Priya’s Medium profile is written and says medium.com/@JustPriyaOfficial.
#MEAction Minnesota State Chapter Leader, Terri Wilder meets up with beloved musician, Stuart Murdoch @nee-massey of Belle & Sebastian @bellesglasgow after a concert in Minnesota to show their support for the #TeachMETreatME initiative for #MillionsMissing! We appreciate how supportive Stuart Murdoch has been! #pwME #MyalgicEncephalomyelitis #BelleAndSebastian #MECFS #WorldMEday ID: Photo of Stuart Murdoch (White man smiling wearing a green jacket and hat) and Terri Wilder (white woman with long dark hair wearing glasses and n95 respirator) wearing a flowy dress. They are holding a sign that says Teach ME Treat ME, 2024 #MillionsMissing
So glad to see this @theatlantic piece out at last - with huge thanks to Ann Hulbert and John Swansburg. I tried t take a first stab at suggesting how we need better language for patients’ subjective experience of health anxiety vs. vigilance vs misreading poorly understood illness as anxiety. Snuck a little critique of how e have approached #longcovid and #mecfs. As ever: medicine needs to take patients’ subjective experience more seriously—and listen more.
Solve advocacy efforts yield another victory! Solve is dedicated to opening new funding avenues for ME/CFS, Long Covid, and post-infection disease research and care. To that end, we’ve specifically advocated with Congress for ME/CFS and Long Covid to be included in Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP), which provide funding to support therapeutic research related to medical threats, and treatments for Service Members in current and future battlefield settings. BioVie was recently awarded an incredible $13.1 million grant from the DOD to evaluate Bezisterim (NE3107) for the treatment of Long Covid. This is one of the largest CDMRP awards ever for a clinical trial. Bezisterim, an anti-inflammatory and insulin-sensitizer that permeates the blood-brain barrier, could represent a novel oral treatment targeting an underlying cause of Long Covid symptoms. #LongCovid #MECFS #IACCIs #StopTheLongHaul #LongCovidResearch
Spoomento – Spoonie-Mentoring – A better life for Spoonies - zurück ins Leben ! „Und ob ich schon wanderte im finsteren Tal, fürchte ich kein Unglück, denn Du bist bei mir.“ Bibelspruch Auszug Psalm 23 “And even though I wander in the dark valley, I fear no evil, for you are with me.” Heute zu Christi Himmelfahrt ( und nicht nur Vatertag ) mal noch etwas Besinnliches. Viele bezeichnen sich als Christen, aber vergessen oft, dass es noch andere Arten von Hilfe gibt. Ich bezeichne mich nicht als religiös, aber glaube an Gott. Viel mehr möchte ich dazu nicht sagen. Allen einen schönen Feiertag ! 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 #bibel #bibelsprüche #mecfs #cfs #postvac #postcovid #erschöpfung #spoonies #spooniecommunity #gemeinsammehrerreichen #gefühlefühlen #mecfsawareness #chronicillnessawareness #alwaystired #herzensmensch #herzmensch #gefühle #gefühl #seelenverwandte #seelenpartner #zurückinsleben #spoonie-mentoring #spooniejörg #spoomento
Myalgic Encephalomyelitis impacts 87,000 people in BC alone, with an additional 118,000 Long Covid sufferers who have been experiencing similar symptoms for over a year. We are all trying to access the same handful of specialists in the province. Of course, the whole medical system needs more help and funding. That plus the stigma against ME being a 'real illness' means that our care is underfunded with multi-year waitlists for clinics. I personally took 5 years to get a diagnosis and have been seeking specialist care and been bounced around for 4 more years. In that time my condition deteriorated from pushing too hard to function like a nondisabled person. -We need government to step up and take action on this to provide adequate care and treatment. -We need medical students to be trained in post-viral illness to reduce diagnosis times, break the stigma, and end medical gaslighting. -We need scientific research; we have no diagnostic tests or approved treatments. -we need access to disability benefits so that we don't work ourselves into further disability. Globally, we are the #millionsmissing , we aren't fully part of society as life continues all around us and even healthcare services are not taking note of us You can help: -educate yourself and treat ME as the real physical illness that is -share and interact with posts you see about ME this week -support people in your life -write to your MLA demanding more clinics for ME and long covid -donate to ME research charities like OMF -continue to wear a mask to prevent more people from getting long covid -wear blue for ME awareness day on May 12th. 💙💙💙 thank you 💙💙💙 #MECFS #LongCovid #MEAwareness #MEAwarenessMonth #TeachMETreatME #MECFSCanada #MECFSBC #MillionsMissingVoices #GoBlueForMECFS #BCPoli #BCHealthCare