Lmst

The Sick Times: "we need more at-home clinical trials for Long COVID. Here’s how we designed the largest one yet"

https://thesicktimes.org/2025/10/30/we-need-more-at-home-clinical-trials-for-long-covid-heres-how-we-designed-the-largest-one-yet/

Register for trial
https://longcovid.scripps.edu/locitt-t/

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

The Sick Times "We need more at-home clinical trials for Long COVID. Here’s how we designed the largest one yet."
Article about the fully remote clinical research study (US residents only) for Long Covid patients. The study will analyze whether the drug tirzepatide can help reduce symptoms.
Article | Register for trial

Se Lisa Noréns, talesperson i Svenska Covidföreningen, öppningstal från forskarkonferensen om postcovid och ME i Stockholm 15 oktober 2025. Konferensen arrangerades av Riksförbundet för ME-patienter och Svenska Covidföreningen.

#covid19 #postcovid #PACS #svenskacovidföreningen #scf #rme

https://youtu.be/uINsZ1B49-8?si=rzp_kGHkSJyuG6yF

@3sat nix für Eulen (oder Kranke)

Leben mit #PostCovid / #MECFS

This Physicist Says We Don't Take COVID Seriously Enough

https://thetyee.ca/Analysis/2025/10/31/Physicist-COVID-Seriously-Enough/

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

@novid #novid

The Tyee This Physicist Says We Don't Take COVID Seriously Enough
A thorough article with interview with MIT-researcher Yaneer Bar-Yam and a summary of the many harms Covid infections may cause and what preventative measures that should be taken .
“The fight in the big pandemic public health story,” says Bar-Yam, “has moved from proving COVID is airborne to building a public health system that acts like it.”

Für die ersten 10 frei lesbar. Vor wenigen Wochen hat DER SPIEGEL auch einen nach meiner Erinnerung noch schlimmeren Fall von ME/CFS bei einer noch etwas jüngeren Frau dokumentiert.

https://www.spiegel.de/gesundheit/eine-junge-pflegebeduerftige-me-cfs-patientin-ueber-die-psychischen-belastungen-ihrer-krankheit-a-d9d44436-8d11-4129-8855-67dbc06f976c?sara_ref=re-xx-cp-sh

#mecfs #LongCovid #PostCovid

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @longcovid @mecfs

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:

Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome

Also shows all the range of ME/#CFS symptoms

#MECFS @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs

1/

Table 4. Symptoms made worse due to physical or cognitive exertion (N = 1534). % (n) "Yes" % (n) at "2" Threshold 99.4 (1525) 98.0 (1504) 98.9 (1517) 98.3 (1508) Items 1. Reduced stamina and/or functional capacity 2. Physical fatigue 3. Cognitive exhaustion 4. Problems thinking 5. Unrefreshing sleep 6. Muscle pain 7. Insomnia 8. Muscle weakness/instability 9. Temperature dysregulation 10. Flu-like symptoms 11. Aches all over your body 12. Physically fatigued while mentally wired 13. Dizziness 14. Gastro-intestinal problems 15. Headaches 16. Ataxia 17. Increased heart rate/heart palpitations 18. Weak or stiff neck 19. Joint pain 20. Problems with speech 21. Sore throats 22. Muscle twitching 23. Night sweats and chills 24. Sore eyes 25. Nerve pain 26. Sore lymph nodes 27. Nausea 28. Tinnitus 29. Trouble breathing 30. Neurological symptoms 31. Excessive sleep 32. Loss of appetite 33. Migraines 34. Cardiac pain and/or arrhythmia 35. Brain twangs 36. Severe burning sensation all over skin 37. Paralysis/inability to move 38. Premenstrual symptoms 39. Decreased heart rate
Sav

Pre-pandemic disease trajectories and genetic insights into long COVID susceptibility

https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-025-04427-x

"Although direct genetic overlap is limited, polygenic risk scores for neurological and musculoskeletal disorders suggest indirect genetic influences”

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

Speciale centra voor postcovid zijn een jaar open: ‘Stapsgewijs krijgen patiënten iets meer kwaliteit van leven’

https://www.volkskrant.nl/wetenschap/speciale-centra-voor-postcovid-zijn-een-jaar-open-stapsgewijs-krijgen-patienten-iets-meer-kwaliteit-van-leven~b8d67b13/

https://archive.is/gG88e

#PostCovid #LongCovid

#MEAction "2nd Annual RECOVER-TLC Research Workshop: A summary"

https://www.meaction.net/post/2nd-annual-recover-tlc-research-workshop-a-summary

Discussion of the National Institutes of Health (NIH) 2025 RECOVER-TLC Workshop.

A recording of the full workshop is available online:
https://www.youtube.com/playlist?list=PLqByiC0rX0ZPNYnGnFgBQzaR71VcOkys_

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19@fedigroups.social #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #auscovid19

Emerge Australia Research Digest | Issue 122

https://emerge.org.au/researchdigest/research-digest-issue-122/

I find the audio summaries useful

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

Welcome to the 122nd edition of the Research Digest. This month’s studies continue to advance understanding of ME/CFS, highlighting biological differences between post-infectious and gradual-onset ME/CFS, uncovering new insights into how extracellular vesicles may drive post-exertional malaise (PEM), and exploring brain metabolism changes following exercise. We also feature a large international survey on patient-reported treatment outcomes across ME/CFS and long COVID, and the RACGP’s launch of a new Specific Interest Group to better support clinicians managing energy-limiting and post-infectious conditions.

Contributing Digesters: Solène, Sarah, Anna and Simone.

Please note: The Research Digest shares current scientific findings for awareness and discussion. It is not a substitute for medical advice or treatment guidance, as much of the research featured is in its early stages and requires further confirmation.

We hope you enjoy the Easy Read Overview and audio summary we’ve included under each article’s title – it’s now even easier to stay informed of the latest ME/CFS and long COVID research!

Den postinfektiösa elefanten i rummet

Vad vi vet om postcovid och ME idag, patientbemötande & vägen framåt. Paneldiskussion med experter, patientföreträdare & politiker.

Professor Jonas Bergquist, infektionsläkare Judith Bruchfeld, Lisa Norén specialistläkare i allmänmedicin, Kerstin Heiling Riksförbundet för ME-patienter (RME), Lina Nordquist (L) & Marie Morell (M).

Uppsala universitet, Svenska Covidföreningen & RME - Almedalen 2025.

#COVID19SE #postcovid #me #SCF

https://youtu.be/UWFkVZLTItE?si=mwmHIZ_5oIRX-KsH

#PostCovid #lebendigbegraben #wahlversprechen mit besten Grüßen von meiner ehemaligen #Rensteiglauf Begleitung....jetzt, im besten Fall, aus dem Rollstuhl...

Eine Schwarzweißzeichnung zeigt zwei Personen vor einem großen Gebäude mit mehreren Kuppeln und Türmen. Die Person auf der linken Seite hält ein Mikrofon und steht vor Schildern. Die Person auf der rechten Seite trägt einen Namensschild.

Die Person auf der linken Seite hat dunkles Haar und hält ein Mikrofon in der Hand. Vor dieser Person stehen mehrere Schilder. Auf den Schildern steht „ME/CFS POST-COVID“ und darunter „LEBENDIG BEGRABEN“. Die Person auf der rechten Seite hat graues Haar und ist im Anzug gekleidet. Auf dem Namensschild dieser Person steht „MERZ“.

Das Gebäude im Hintergrund scheint ein Parlamentsgebäude zu sein.

"HATTEN SIE IN DER OPPOSITION NICHT EINE NATIONALE FORSCHUNG ZU POSTVIRALEN KRANKHEITEN GEFORDERT?" steht über der Person auf der linken Seite. "DIESE LEUTE PASSEN NICHT MEHR IN MEIN STADTBILD." steht über der Person auf der rechten Seite.

News Release 30-Oct-2025

Scripps Research scientists launch new digital clinical trial to test repurposed drug for #longCOVID symptom relief

https://www.eurekalert.org/news-releases/1104084

Great to see a remote trial. Hopefully we'll also see them in #MECFS though more of any clinical trials would be good!

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #SARSCoV2
@mecfs
#MyalgicEncephalomyelitis #CFS #PwME

News Release 30-Oct-2025
Scripps Research scientists launch new digital clinical trial to test repurposed drug for long COVID symptom relief
Study will investigate whether a GIP/GLP-1 dual receptor agonist, currently approved for type 2 diabetes, obesity and obstructive sleep apnea, can reduce symptoms of long COVID.

Business Announcement
Scripps Research Institute

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LA JOLLA, CA—Scientists at the Scripps Research Translational Institute invite people with long COVID across the U.S. to join a remote clinical trial that is testing whether an existing FDA-approved therapy, tirzepatide, can provide relief from long COVID symptoms.

Kurzfristiger Veranstaltungstipp:

"CRASH - Feministische Theaterperformance über Post-Covid, ME/CFS und das Gesundheitssystem" im Hedwig-Dohm-Haus in der Ziegelstraße 5, Berlin-Mitte, heute Abend um 19:00 Uhr.

Eintritt frei, Spenden erbeten, Maske erwünscht.

https://crash-performance.weebly.com/bilder-video.html

#Berlin #Theater #Feminismus #PostCovid #LongCovid #MECFS #Gesundheit

News Release 29-Oct-2025

COVID may increase risk of dangerous blood clots after panniculectomy
https://www.eurekalert.org/news-releases/1103859

Comment: Presumably such an increased risk may not be restricted to this particular surgical procedure

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

@novid #novid

News Release 29-Oct-2025
COVID may increase risk of dangerous blood clots after panniculectomy
COVID history is an 'additional risk factor' for VTE, reports Plastic and Reconstructive Surgery

Peer-Reviewed Publication
Wolters Kluwer Health

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October 29, 2025 — Among patients undergoing panniculectomy to remove excess abdominal skin, those with previous COVID may be at higher risk of serious blood clot-related complications called venous thromboembolism (VTE), reports a study in the November issue of Plastic and Reconstructive Surgery®, the official medical journal of the American Society of Plastic Surgeons (ASPS). The journal is published in the Lippincott portfolio by Wolters Kluwer.

"Our findings suggest that past COVID may be an additional predisposing risk factor for VTE among patients undergoing panniculectomy," comments lead author Mary Newland, BS, a medical student at Penn State College of Medicine, Hershey, Pa. "This may have implications for assessment and prevention of surgical risks of body contouring surgery after major weight loss."

UK Covid Enquiry, article in The Mirror newspaper
https://www.mirror.co.uk/news/uk-news/covid-19-inquiry-reveals-forgotten-36115749

Screenshot from latest Chronic Living Therapy e-newsletter
https://chroniclivingtherapy.com/5-elsewhere-on-the-web-oct-2025/#mirror-long-covid-inquiry

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

#LongCovidKids #LCKids

UK Covid Enquiry, article in The Mirror newspaper
The Mirror published an article on children and the Covid Inquiry currently taking place in the UK, featuring activists and people with experience of pediatric Long Covid as well as expert critics of the school closure implementations. Our friends from Long Covid Advocacy are amongst families and activists quoted in the article. Their spokesperson is quoted saying:

‘The government’s failure to prepare schools for Covid-19 wasn’t accidental – it was ideological. When Boris Johnson compared Long Covid to ‘Gulf War Syndrome,’ he exposed a belief system that dismissed biological illness as psychologically influenced. That same mindset drove policies that left children unprotected, unresearched, and unheard.’

Claire Every, spokesperson for Long Covid Advocacy, quoted by The Mirror newspaper

Machine learning analysis of fNIRS-derived hemodynamics revealed distinct cortical patterns distinguishing post-COVID-19 from controls (AUC=0.91) 🧠🦠

Read the publication at: https://www.mdpi.com/2504-4990/7/4/129

#fNIRS #Neuroimaging #BrainResearch #PostCOVID

A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff

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

Hospital Guidance: Post-Exertional Malaise (PEM) - Care Requirements
CLINICAL WARNING: When the patient is in PEM, any extra activity (sitting up, walking, answering questions) can worsen symptoms, reset recovery, and accelerate long-term decline. Strict protection of rest is required.
Overnight Care Guidance
Lighting and Noise: Keep the room dark and silent overnight. Avoid unnecessary door openings. Use minimal light if checks are required.
Sleep Protection: Do not wake for routine observations unless clinically essential. Cluster any checks to reduce disturbance.
Environment: Ensure call bell, water, and medications are within reach before settling for the night.
Communication: Avoid questions or conversation if the patient wakes. Speak quietly and keep interactions minimal.
Escalation: If pain, tachycardia, or instability occurs, respond calmly, minimise sensory exposure, and escalate as clinically indicated.
Documentation: Overnight staff should record sleep protection strategies and PEM episode status at shift start and end.
Personal Care - Showering and Hygiene
Daily shower prompts are not required. Please be guided by the patient as to when capacity allows.
General Principle: Patient will indicate readiness for washing or showering. No need to prompt daily. Frequency: Showering may be limited to once a week or less during severe PEM. Over-exertion can worsen symptoms.
Alternatives: Patient may use wet wipes or gentle seated wash in lieu of shower as tolerated.

News Release 29-Oct-2025:

"Some acute and chronic viral infections may increase the risk of cardiovascular disease: Prevention measures, including vaccination, may play important role in cutting the risk of serious cardiovascular events"

https://www.eurekalert.org/news-releases/1103173

#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

@novid #novid

#postCOVID

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