Reposted by christina4hopeSammie McFarland @sammiemc.bsky.social · 29/03/2025#FiveYears ago this week, my life changed beyond recognition. And I’m still piecing together what’s left. 5yrs since a virus tore through my life and left me trying to build a new version of “normal” that feels anything but. 5yrs of living with #LongCovid, as a patient, as a mother supporting a 2185
Reposted by christina4hopesibylle dahrendorf @sibylledahrendorf.bsky.social · 05/02/2025🎥#Trailer #ChronischKrank #ChronischIgnoriert Bitte reichlich streuen - Sendetermin 25.02.2025, um 22.35 Uhr, auf arte, ab 24.02.2025 in der arte Mediathek online abrufbar. "Der größte Skandal ist eigentlich die schiere Menge an Patienten" youtu.be/s_TrZVuqi-kyoutu.beCHRONISCH KRANK - CHRONISCH IGNORIERT - TRAILER arte DokuYouTube video by Sibylle Dahrendorf 7187124
Reposted by christina4hopeÖ. Ges. für ME/CFS @mecfs.at · 20/02/2025📍Filmempfehlung: “Chronisch krank - Chronisch ignoriert” ab 24.02. in der ARTE.de Mediathek + am 25.02., 22.35 Uhr auf #ARTE📍 Eine eindrucksvolle Doku von @sibylledahrendorf.bsky.social, selbst schwer an #MECFS, #PoTS, #SFN, #CCI und Fluorchinolon-Vergiftung erkrankt. 1/5 23319
Reposted by christina4hopeDr Elisa Perego @elisaperego78.bsky.social · 14/02/2025Rising star Perricard, 21 (like Rune and Alcaraz), withdrew last week from the same Rotterdam tournament with illness and has now withdrawn from Marseille with "the flu". 101
Reposted by christina4hopeCarole K @misfitspartancak.bsky.social · 19/01/2025Be the kindness you want to see in the world. If someone isn't smiling, offer them yours. 041
Reposted by christina4hopeMariaStein @steineundbasalt.bsky.social · 17/01/2025GdB: "Psychische Störung mit funktionellen Organbeschwerden (30)" Ähm ja ne. 🙄 #MEcfs 8262
Reposted by christina4hope#ApresJ20 - Association Covid Long France @apresj20.bsky.social · 17/01/2025🔗 Il est temps d’abandonner le modèle CB et de développer des recherches centrées sur les causes biologiques. #Apresj20frontiersin.orgFrontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of thatThe cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord... 052
Reposted by christina4hopeIt's ME(Jaime) @exceedhergrasp1.bsky.social · 17/01/2025Finally, there is a good practice statement. On the face of it, Just Fine, but patients say CBT for chronic illness sucks in Canada. Can be demeaning, esp. if symptoms are severe. There is also a research statement urging ongoing analysis of new services, systems, and social supports. (5/6) 151
Reposted by christina4hopeDt. Ges. für ME/CFS @dgmecfs.bsky.social · 16/12/2024🔎 Eine neue Studie von Lotte Habermann-Horstmeier und Lukas Horstmeier analysiert die Erfahrungen von ME/CFS-Betroffenen im deutschen Gesundheitssystem. Dabei berichten etwa 90 % der Befragten von überwiegend oder ausschließlich negativen Erfahrungen und es zeigt sich, (1/2) 53725
Reposted by christina4hopeDt. Ges. für ME/CFS @dgmecfs.bsky.social · 20/12/2024In unserem Jahresrückblick ziehen wir eine Bilanz über die Highlights aus 2024 und informieren euch über unsere aktuellen Projekte. Auch in diesem Jahr hat sich viel rund um ME/CFS bewegt: Zum ersten Mal stellt das BMBF 15 Millionen € für die Forschung an den Grundlagen von ME/CFS bereit. (1/3) 23117
Reposted by christina4hopeEsther @elhopkins.bsky.social · 04/01/2025@carolvorderman.bsky.social Will you help support this petition please 🙏 petition.parliament.uk/petitions/70...petition.parliament.ukPetition: Introduce new air quality and PPE rules for health and social care settingsWe want the Government to set new rules on air quality and infection control in health and social care settings, to prevent and control airborne infections, with new ventilation and filtration require... 0118
Reposted by christina4hopekataan13.bsky.social @kataan13.bsky.social · 31/12/2024My granddaughter has a cough that has been going on for months 302
Reposted by christina4hopeKirstie Sivapalan @kirsties.bsky.social · 01/01/2025I love the first hour of New Year's day. It's the relief, the hope, the renewal. Anything and everything is possible. 2025. It's here 🎉💕✨ 051
christina4hope @christina4hope.bsky.social · 29/12/2024mecfsskeptic.com/2024-looking...mecfsskeptic.com2024: looking back on a year of ME/CFS research - ME/CFS SkepticAs 2024 comes to a close, it is time to review the most interesting studiesContinue reading2024: looking back on a year of ME/CFS research 011
christina4hope @christina4hope.bsky.social · 29/12/2024www.ardmediathek.de/video/ulrich...ardmediathek.deUlrich Timm im Gespräch mit Prof. Carmen Scheibenbogen - hier anschauenCorona ist mittlerweile zum Alltag geworden, schwere Fälle sind selten und die meisten Menschen, die sich infizieren, haben nur leichte Symptome und sind bald wieder fit. Was jetzt immer mehr in den... 000
Reposted by christina4hopeTiff @creativetiff78.bsky.social · 26/12/2024This is really, really important. 273
christina4hope @christina4hope.bsky.social · 19/12/2024A very good article about vitamin B3 deficiency . (Which I have got). #MECFS #Fibromyalgia #PsychotropicMedicine swaresearch.blogspot.com/2024/12/vita...swaresearch.blogspot.comVitamin B3 Deficiency 010
christina4hope @christina4hope.bsky.social · 17/12/2024Ziel der Studie ist es, ein Register zu implementieren, das die Daten von Personen erfasst, die an gesundheitlichen Einschränkungen im Sinne der Post-Vac-Symptomatik, ausgelöst durch Impfungen oder virale Infektionen bzw. auch einer Kombination von mehreren Faktoren, leiden 210
christina4hope @christina4hope.bsky.social · 17/12/2024www.kbv.de/html/1150_73...kbv.deKBV - Neue EBM-Leistungen für Patienten mit Verdacht auf Long COVID 010
christina4hope @christina4hope.bsky.social · 17/12/2024www.uni-augsburg.de/de/fakultaet...uni-augsburg.deREFORME 000
Reposted by christina4hopesarah boothby @swastrosarah.bsky.social · 06/12/2024Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here. NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME. 🙏 @gwynnemp.bsky.social 27950
Reposted by christina4hopeColleen Steckel @colleensteckel.bsky.social · 20/10/2024Advocating for best science starting with careful patient selection for research. Vague criteria impede progress for #MyalgicEncephalomyelitis, LongCovid & other marginalized diseases. My Substack, View from the Trenches of ME, educates about ME-ICC & more open.substack.com/pub/colleens...open.substack.comView from the Trenches of MEMaster List of Articles 1248
Reposted by christina4hopeBilly Hanlon @bhanlon15.bsky.social · 13/12/2024New York Times: 'How Covid Can Change Your Gut' '...gastrointestinal symptoms...may be one of a slew of other long Covid symptoms, including fatigue and brain fog..." www.nytimes.com/2024/12/12/w...nytimes.comHow Covid Can Change Your GutDiarrhea, constipation, pain, bloating: We asked experts why the virus causes these issues and what to do about them. 26933
Reposted by christina4hopeSue @inkblue01.bsky.social · 14/12/2024"While vaccination decreases the severity of acute COVID infection, the sobering conclusion of our study is that vaccination prior to infection did not alter the subsequent neurologic manifestations of long COVID in our clinic population." academic.oup.com/braincomms/a...academic.oup.comVaccination prior to SARS-CoV-2 infection does not affect the neurologic manifestations of long COVIDMukherjee et al. report that vaccination prior to SARS-CoV-2 infection does not affect the neurological manifestations of Long COVID. Minor symptom differe 28405204
Reposted by christina4hopeEzra S @ezra.zone · 14/12/2024If you also want to have a doctor drill holes in your bones for science, are in the Bay Area, and have a positive Covid test from any time since 2020, you can join me! The team especially needs people who had Covid and fully recovered (ie don't have Long Covid). Tell 'em I sent ya! liincstudy.orgliincstudy.orgLIINC - Long-term Impact of Infection with Novel CoronavirusLIINC studies the biology behind the long-term consequences from COVID-19 and other infections. Learn More Join the Study Have you ever had COVID-19? The 22915
Reposted by christina4hopeBilly Hanlon @bhanlon15.bsky.social · 14/12/2024Open Medicine Foundation: 'What Happened to Physics Girl? How Long COVID Has Changed Her Life' 'Dianna’s struggle with Long COVID has been both profound and challenging' www.omf.ngo/physics-girl...omf.ngoWhat Happened to Physics Girl? Living With Long COVID - OMFDiscover Dianna Cowern's battle with Long COVID and how it has affected her life. Learn about the fundraising efforts to support research and how you can help. 18637
Reposted by christina4hopeTom Kindlon @tomkindlon.bsky.social · 14/12/20248-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS 46639
christina4hope @christina4hope.bsky.social · 14/12/2024www.griffith.edu.au/research/hea... about #MECFS #Longcovidgriffith.edu.auNCNED 011
christina4hope @christina4hope.bsky.social · 13/12/2024Film :Viel Leid, wenig Hilfe - Die Krankheit ME/ 020
christina4hope @christina4hope.bsky.social · 13/12/2024#ME #MECFS #Fibromyalgia #PsychotropicMedicine I just found out that I have got B3 deficiency. Some advice get B3 tested. I’m not sure why I’ve got B3 deficiency one can get it from taking psychotropic medicine. I also have MECFS and Fibromyagia 220
Reposted by christina4hopeLong Covid Advocacy @longcovidadvoc.com · 09/12/2024🦠Prof Ron Davis has done a talk on the Neutrophil Assessment Platform 🧪 Which could be a biomarker for #mecfs Interesting especially in light of the recent paper on neutrophil dysfunction in #longcovidkids #medsky #idsky youtu.be/aUl2cSZ9fUg?...youtu.beNeutrophil Assessment Platform: Dr. Ron Davis Shares InsightsYouTube video by Open Medicine Foundation - OMF 63719
Reposted by christina4hopeMaike Osborne @maosbot.bsky.social · 09/12/2024The pandemic was certainly not inevitable, and its continuation is not inevitable even now—all this death and disability was and is a choice we have made 0335
Reposted by christina4hopeDebra Guckenheimer, PhD @debraguckenheimer.com · 29/10/2024Teaching kids to respect each other's pronouns is a "home" issue according to some of the most progressive schools in Kansas City. My kid is regularly misgendered at school, and I can sadly find no one to do anything about it. 101
Reposted by christina4hopeBilly Hanlon @bhanlon15.bsky.social · 03/12/2024'Study reveals pathways behind organ damage in severe COVID-19' 'They found that overactivation of RAAS and a cytokine storm combined to create a hurricane of inflammation that wreaked havoc in multiple organ systems..' www.news-medical.net/news/2024120...news-medical.netStudy reveals pathways behind organ damage in severe COVID-19New research published in the journal Proceedings of the National Academy of Sciences sheds light on the pathways that drive organ damage and death in severe COVID-19 and helps explain why survivors o... 0198
Reposted by christina4hopeIt's ME(Jaime) @exceedhergrasp1.bsky.social · 03/12/2024Today is International Day of Persons with Disabilities! This year's theme is disabled leadership shaping a more inclusive & equitable world. The inclusion of people with lived experience in study design is often framed as an ethical issue-- but it is also associated with research quality. 🧪 #IDPDsocial.desa.un.org2024 International Day Of Persons With Disabilities (IDPD) | Division for Inclusive Social Development (DISD)The International Day of Persons with Disabilities (IDPD) is observed annually on December 3rd. The theme for this year is "Amplifying the leadership of persons with disabilities for an inclusive and ... 312236
Reposted by christina4hopeFetthenne Carl @fetthennecarl.bsky.social · 03/12/2024Gute Zusammenfassung über verschiedene Therapien jenseits der antiviralen Therapie für akutes Covid und postakute Folgen (Postcovid). Aufgelistet sind u.a. Metformin, Low-dose Naltrexon, L-Arginin, Q10, Dexamethason, Statine, IVIG, therapeutische Apharese... www.mdpi.com/1999-4915/16...mdpi.comBeyond Antivirals: Alternative Therapies for Long COVIDLong COVID or Post-Acute Sequelae of SARS-CoV-2 infection (PASC) is a condition characterized by numerous lingering symptoms that persist for weeks to months following the viral illness. While treatme... 12312
Reposted by christina4hopechristina4hope @christina4hope.bsky.social · 24/11/2024Has #MECfS #Fibromyalgia tryed VegEPA ? . If so does it help?. where did you buy it? Did you get discount?. How much do you take daily?. Thanks 021
Reposted by christina4hopeScience for ME (S4ME) @s4me.info · 24/11/2024Find #MECFS, #LongCovid, and related news, advocacy and research in our latest News in Brief forum post for w/c 18th Nov. Topics covered: News, articles and advocacy In Memory Trial by Error by David Tuller Research news & Published research www.s4me.info/threads/news...s4me.infoNews in Brief - November 2024This thread has a Science for ME 'News in Brief' post for each week in November 2024 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman.... 02312