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christina4hope

@christina4hope.bsky.social
1K followers 1.1K following 83 posts

👋ME/CFS ,Fibromyalgia , lyme Boriliose,Longcovid,MCS ,Vax Injured (not corrona vax),Hearing loss ect… Posts English and German. Bavaria ,Germany

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nervbueddel @nervbueddel.eurosky.social · 06/05/2025
🫩
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christina4hope @christina4hope.bsky.social · 31/03/2025
#ME/CFS drive.google.com/file/d/1NXAr...
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christina4hope @christina4hope.bsky.social · 31/03/2025
#ME/CFS
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christina4hope @christina4hope.bsky.social · 31/03/2025
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Sammie 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
A collage of photos showing strength, fitness, advocacy and disability, highlighting how life has changed since Long Covid.
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sibylle 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-k
youtu.be
CHRONISCH KRANK - CHRONISCH IGNORIERT - TRAILER arte Doku
YouTube video by Sibylle Dahrendorf
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Ö. 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
Zu lesen ist: “Filmempfehlung: ‘Chronisch krank - chronisch ignoriert’. 25.02.2025, 22:35 auf ARTE”. Im Hintergrund sieht man das Filmplakat, das aus Kacheln mit Bildern aus dem Film besteht. In Orange steht im Zentrum “Chronisch ignoriert”.
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Dr Elisa Perego @elisaperego78.bsky.social · 14/02/2025
Rising 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".
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Carole K @misfitspartancak.bsky.social · 19/01/2025
Be the kindness you want to see in the world. If someone isn't smiling, offer them yours.
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MariaStein @steineundbasalt.bsky.social · 17/01/2025
GdB: "Psychische Störung mit funktionellen Organbeschwerden (30)" Ähm ja ne. 🙄 #MEcfs
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#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. #Apresj20
frontiersin.org
Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that
The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord...
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 17/01/2025
Finally, 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)
Good Practice Statement
Healthcare systems should provide psychoeducational resources for caregivers of people with confirmed post COVID-19 condition to access for their well-being and caregiving capacity (ungraded good practice statement). Remarks: Psychoeducational supports include skills building, self-help, self-management, coping skills, or peer support. Individuals may utilize existing caregiver support programs for other chronic complex conditions.Health care services and system, social support for post COVID-19 condition
Topic: Health care services and systems, social support
The CAN-PCC Collaborative suggests in contexts where specialised services are available or being (re)introduced, these services undergo formal evaluation and the impact on key outcomes (including benefits and harms), costs and other considerations is measured (research recommendation). Remarks: While research is being conducted or where specialised care services or primary care services are limited, people with post COVID-19 condition need health care support, education and/or disability support.
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christina4hope @christina4hope.bsky.social · 16/01/2025
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Dt. 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)
Schriftzug: Studie zu Erfahrungen von pwME im Gesundheitssystem: 90 % der Befragten berichten überwiegend oder ausschließlich negative Erfahrungen.
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Dt. Ges. für ME/CFS @dgmecfs.bsky.social · 20/12/2024
In 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)
Jahresrückblick 2024: Eine Collage aus drei Bildern zu Ereignissen aus diesem Jahr: ein Bild von Sebastian Musch beim Runden Tisch des BMG, ein Bild mit einer Hand, die Informationsblätter zu ME/CFS hält und ein Bild von Dr. Marie Witt und einer weiteren Person, die den Award der ODDO BHF Stiftung in Form eines großen Schecks mit der Summe von 25000€ für die DG.ME/CFS entgegennehmen. 

Fotocredits Collage: Pedro Becerra / DG.ME/CFS / Kurt Sauer
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Esther @elhopkins.bsky.social · 04/01/2025
@carolvorderman.bsky.social Will you help support this petition please 🙏 petition.parliament.uk/petitions/70...
petition.parliament.uk
Petition: Introduce new air quality and PPE rules for health and social care settings
We 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...
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kataan13.bsky.social @kataan13.bsky.social · 31/12/2024
My granddaughter has a cough that has been going on for months
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Kirstie Sivapalan @kirsties.bsky.social · 01/01/2025
I 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 🎉💕✨
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christina4hope @christina4hope.bsky.social · 31/12/2024
#ME/CFS
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christina4hope @christina4hope.bsky.social · 31/12/2024
#ME/CFS
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christina4hope @christina4hope.bsky.social · 29/12/2024
mecfsskeptic.com/2024-looking...
mecfsskeptic.com
2024: looking back on a year of ME/CFS research - ME/CFS Skeptic
As 2024 comes to a close, it is time to review the most interesting studiesContinue reading2024: looking back on a year of ME/CFS research
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christina4hope @christina4hope.bsky.social · 29/12/2024
www.ardmediathek.de/video/ulrich...
ardmediathek.de
Ulrich Timm im Gespräch mit Prof. Carmen Scheibenbogen - hier anschauen
Corona 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...
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Tiff @creativetiff78.bsky.social · 26/12/2024
This is really, really important.
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christina4hope @christina4hope.bsky.social · 19/12/2024
#ME/CFS #Fibromyalgie #LongCovid
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christina4hope @christina4hope.bsky.social · 19/12/2024
A very good article about vitamin B3 deficiency . (Which I have got). #MECFS #Fibromyalgia #PsychotropicMedicine swaresearch.blogspot.com/2024/12/vita...
swaresearch.blogspot.com
Vitamin B3 Deficiency
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christina4hope @christina4hope.bsky.social · 17/12/2024
Ziel 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
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christina4hope @christina4hope.bsky.social · 17/12/2024
www.kbv.de/html/1150_73...
kbv.de
KBV - Neue EBM-Leistungen für Patienten mit Verdacht auf Long COVID
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christina4hope @christina4hope.bsky.social · 17/12/2024
www.uni-augsburg.de/de/fakultaet...
uni-augsburg.de
REFORME
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sarah boothby @swastrosarah.bsky.social · 06/12/2024
Please 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
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Colleen Steckel @colleensteckel.bsky.social · 20/10/2024
Advocating 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.com
View from the Trenches of ME
Master List of Articles
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Billy Hanlon @bhanlon15.bsky.social · 13/12/2024
New 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.com
How Covid Can Change Your Gut
Diarrhea, constipation, pain, bloating: We asked experts why the virus causes these issues and what to do about them.
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Sue @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.com
Vaccination prior to SARS-CoV-2 infection does not affect the neurologic manifestations of long COVID
Mukherjee et al. report that vaccination prior to SARS-CoV-2 infection does not affect the neurological manifestations of Long COVID. Minor symptom differe
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Ezra S @ezra.zone · 14/12/2024
If 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.org
liincstudy.org
LIINC - Long-term Impact of Infection with Novel Coronavirus
LIINC 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
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Billy Hanlon @bhanlon15.bsky.social · 14/12/2024
Open 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.ngo
What Happened to Physics Girl? Living With Long COVID - OMF
Discover 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.
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Tom Kindlon @tomkindlon.bsky.social · 14/12/2024
8-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
Screenshot of abstract
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christina4hope @christina4hope.bsky.social · 14/12/2024
www.griffith.edu.au/research/hea... about #MECFS #Longcovid
griffith.edu.au
NCNED
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christina4hope @christina4hope.bsky.social · 13/12/2024
Film :Viel Leid, wenig Hilfe - Die Krankheit ME/
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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
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Long 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.be
Neutrophil Assessment Platform: Dr. Ron Davis Shares Insights
YouTube video by Open Medicine Foundation - OMF
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Maike Osborne @maosbot.bsky.social · 09/12/2024
The 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
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christina4hope @christina4hope.bsky.social · 08/12/2024
on.orf.at/video/142538...
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Debra Guckenheimer, PhD @debraguckenheimer.com · 29/10/2024
Teaching 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.
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Billy 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.net
Study reveals pathways behind organ damage in severe COVID-19
New 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...
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 03/12/2024
Today 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. 🧪 #IDPD
social.desa.un.org
2024 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 ...
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Fetthenne Carl @fetthennecarl.bsky.social · 03/12/2024
Gute 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.com
Beyond Antivirals: Alternative Therapies for Long COVID
Long 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...
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christina4hope @christina4hope.bsky.social · 24/11/2024
Has #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
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Science for ME (S4ME) @s4me.info · 24/11/2024
Find #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.info
News in Brief - November 2024
This 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....
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