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Beiträge, die mit postCOVID getaggt sind

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Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

https://www.mdpi.com/1660-4601/22/2/275

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/
Abstract People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases—termed the “never-words”—can leave patients in significant emotional distress and negatively impact the clinician–patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighte…
MDPI
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @MECFS group @longcovid group

The Orexin System and Its Impact on the Autonomic Nervous and Cardiometabolic System in Post-Acute Sequelae of COVID-19

https://www.mdpi.com/2227-9059/13/3/545

From latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @auscovid19 #auscovid19
Biomedicines The Orexin System and Its Impact on the Autonomic Nervous and Cardiometabolic System in Post-Acute Sequelae of COVID-19 — Ruhrländer et al. Review. "We assume that several symptoms that occur after COVID-19 are due to an imbalance in the OX system. In particular, factors such as vascular tone, cardiac and endothelial function, lipid metabolism, and neuropeptide regulation are crucial to the pathophysiology of the OX system, as well as PASC."

The Orexin System and Its Impact on the Autonomic Nervous and Cardiometabolic System in Post-Acute Sequelae of COVID-19

Orexins (OXs) are critical for regulating circadian rhythms, arousal, appetite, energy metabolism, and electrolyte balance, affecting both the autonomic nervous system (ANS) and the cardiovascular system (CVS).
MDPI
#COVID19 #COVID #LongCovid #PostCovid #PASC #LongHaulers #sarscov2 #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #Coronavirus #COVID_19 #covidー19 #auscovid19 #neuropasc @AusCOVID19 group @longcovid group @covid19 group

Inhaltswarnung: Long-covid, request for advice

#cfs #COVID #LongCovid #mecfs #PostCovid #recovery #illness #me @longcovid group

Sympathetic article; quotes 3 German experts

"Years after the pandemic, has the threat of #LongCovid subsided?"

https://www.yahoo.com/news/years-pandemic-threat-long-covid-153323420.html

Includes this "Depending on the symptoms, doctors will often recommend exercise therapy ..." but then that can be true for people without PEM

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver

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dpa international Years after the pandemic, has the threat of Long Covid subsided? DPA Mon, February 24, 2025 at 3:33 PM GMT5 min read 4 Many Long Covid sufferers first have to learn to accept that even small household tasks burn up a huge amount of energy. Annette Riedl/dpa Many Long Covid sufferers first have to learn to accept that even small household tasks burn up a huge amount of energy. Annette Riedl/dpa After the initial global shock of the pandemic, another followed. Some people, it emerged, were surviving an infection, but not making a full recovery. About four years ago, it started to become clear that Sars-CoV-2, the coronavirus behind the pandemic, could impair mental and physical performance well beyond the initial infection. The phenomenon of symptoms lasting longer than four weeks has long since been given a name - Long Covid. However, medicine is still a long way from curing the causes of such long-term effects.

Years after the pandemic, has the threat of Long Covid subsided?

After the initial global shock of the pandemic, another followed. Some people, it emerged, were surviving an infection, but not making a full recovery. About...
DPA (Yahoo News)
#COVID19 #COVID #LongCovid #PostCovid #PASC #LongHaulers #CovidIsNotOver #sarscov2 #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #Coronavirus #novid #neuropasc @NoVID @longcovid group @covid19 group @novid group

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

Particularly relevant when similarities with the #LongCovid presentation in some people are being missed

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @MECFS group @longcovid group

Die größte #PostCovid-Studie Deutschlands zeigt: Zwei Drittel der Betroffenen erfahren auch Monate nach der #Infektion keine Besserung. Studienleiter Prof. Dr. Winfried Kern erläutert im #Exklusiv-Interview mit @martinruecker die wichtigsten Erkenntnisse: https://www.riffreporter.de/de/wissen/long-covid-epiloc-studie-langzeitfolgen-corona-mecfs-forschung-interview-winfried-kern

Post-Covid-Betroffene: „Bei zwei Dritteln verbessert sich der Zustand nicht“

Vier Unikliniken untersuchten systematisch Menschen, die unter Corona-Langzeitfolgen leiden. Im Exklusiv-Interview erklärt Studienleiter Winfried Kern, was er daraus für die Krankheitsmechanismen ableitet – und weshalb Betroffene in Arztpraxen oft fa…
Martin Rücker (RiffReporter)
#PostCovid #infektion #exklusiv @martinruecker

From the Solve ME/CFS Initiative

People w/ #LongCovid may participate in a new clinical trial testing whether the drug baricitinib improves neurocognitive function & other functions diminished by Long Covid. Learn more about the trial led by Dr. Wesley Ely of
the Vanderbilt University Medical Center here:
https://ow.ly/paS250UOeWv

@longcovid
#PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

New Clinical Trial Will Test How Baricitinib Improves Neurocognitive Function in Patients with Long Covid - Solve ME/CFS Initiative

Patients with Long Covid may participate in an important new clinical trial—the REVERSE-LC trial (Evaluating Baricitinib on Persistent Neurologic and Cardiopulmonary Symptoms of Long COVID)—which will test whether the drug baricitinib improves neuroc…
Karman Kregole (The Solve ME/CFS Initiative)
#COVID19 #COVID #LongCovid #PostCovid #PASC #sarscov2 #pwlc #lc #postcovidsyndrome #covidbrain #COVID_19 #covidー19 @longcovid group @covid19 group

Effect of respiratory rehabilitation on quality of life in individuals with post-COVID-19 symptoms: A randomised controlled trial

https://www.sciencedirect.com/science/article/pii/S1877065724001039

Image is from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
Annals of Physical and Rehabilitation Medicine Effect of respiratory rehabilitation on quality of life in individuals with post-COVID-19 symptoms: A randomised controlled trial — del Corral et al. "The aim of this study was to assess the effect of adding inspiratory and expiratory muscle training to an [aerobic exercise] training program on short-term HRQoL and exercise tolerance in individuals with [LC]" "the differences between groups were not statistically significant for HRQoL, exercise tolerance, psychological distress, and lung diffusing capacity."
#LongCovid #PostCovid #PASC #LongHaulers #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome @longcovid group

Women and an unusually healthy cohort at greater risk of long-Covid, HSE study suggests

"#LongCovid is more common in ­Ireland among women and people who reported doing regular exercise before their illness, according to a new report."

https://m.independent.ie/irish-news/women-and-an-unusually-healthy-cohort-at-greater-risk-of-long-covid-hse-study-suggests/a1050583513.html

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC @covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
#auscovid19

Women and an unusually healthy cohort at greater risk of long-Covid, HSE study suggests

Long-Covid is more common in ­Ireland among women and people who reported doing regular exercise before their illness, according to a new report.
Eilish O'Regan (Irish Independent)
#COVID19 #COVID #LongCovid #PostCovid #PASC #LongHaulers #CovidIsNotOver #sarscov2 #pwlc #PostCovid19 #lc #postcovidsyndrome #covidbrain #Coronavirus #COVID_19 #covidー19 #novid #auscovid19 #neuropasc @NoVID @longcovid group @covid19 group @novid group

New from Canada/Ireland/UK/US:

“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with
#LongCOVID...an international community-engaged qualitative research study

https://www.medrxiv.org/content/10.1101/2024.12.11.24318864v1

Also relevant to #MECFS

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of abstract

“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study

Introduction Long COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms.
medRxiv
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome @MECFS group @longcovid group

Sweden:
"Despite broad criticism, the National Board of Health and Welfare will not update its knowledge support on post-infectious conditions."

Google English translation:
https://fof-se.translate.goog/artikel/socialstyrelsen-underkanner-whos-kunskapsunderlag-om-postcovid/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Screenshot from Science for ME update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS
Sweden The research magazine Forskning & Framsteg writes about The National Board of Social Affairs and Health's guideline for post Covid and related conditions including ME/CFS. It has received a lot of criticism, among other for not including WHO's red flags regarding rehabilitation and safety for patients. Dr. Judith Bruchfeld says this is worrying and that she also misses information on POTS and breathing problems.

Socialstyrelsen underkänner WHO:s kunskapsunderlag om postcovid

Socialstyrelsens kunskapsstöd om postinfektiösa tillstånd presenterades i augusti i år och fick då skarp kritik från läkare, forskare och patientföreningar – vilka ansåg att det …
jonas.mattsson@fof.se (Forskning & Framsteg)
#cfs #pots #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome @MECFS group @longcovid group

The Institute for Neuro-Immune Medicine has posted a video (42 minutes): "Neurovascular Dysregulation During Exercise in ME/CFS and Long COVID."

In it Dr David Systrom talks about new research on neurovascular issues in #MECFS & #LongCOVID
https://www.youtube.com/watch?v=TD-eSXKvfq

#PEM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid

- YouTube

Auf YouTube findest du die angesagtesten Videos und Tracks. Außerdem kannst du eigene Inhalte hochladen und mit Freunden oder gleich der ganzen Welt teilen.
www.youtube.com
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #lc #postcovidsyndrome #PEM @MECFS group @longcovid group

From ME Research UK:

"Estimating ME/CFS prevalence in individuals with long COVID"

During the early phases of the COVID-19 pandemic, as the term ‘long COVID’ first emerged, Dr Anthony Komaroff raised a crucial question in an article:

"Will some people who get COVID-19 subsequently develop ME/CFS? … many people with ME/CFS say that their illness began with some kind of infection: a virus, a flu, a bad cold."

@longcovid @mecfs

#LongCovid #MEcfs #PostCovid #PASC #LongHaulers
Key points - Long COVID and ME/CFS have overlapping symptoms, yet many studies overlook the proportion of individuals with long COVID who meet ME/CFS criteria. - Improving on previous research, Dr Leonard Jason and Joseph Dorri’s study reveals that 58% of their long COVID participants met ME/CFS criteria. Nevertheless, the authors acknowledged the study’s limitations and emphasise the need for long-term follow-up. - To improve future long COVID studies, symptom questionnaires such as DSQ-PEM could aid in determining the proportion of participants meeting ME/CFS criteria. - Given the predicted rise in disease burden and economic costs linked to ME/CFS as a result of the COVID-19 pandemic, thorough investigation is imperative.
#LongCovid #mecfs #PostCovid #PASC #LongHaulers @MECFS group @longcovid group

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