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**Tom Kindlon** @tomkindlon@disabled.social · 15h

15h

Tom Kindlon @tomkindlon@disabled.social

"Does Paxlovid reduce #longCOVID symptoms? Yale-led trial finds out"
https://www.eurekalert.org/news-releases/1079637

"PAX LC team pioneered a novel, decentralized design that brought the trial into 100 participants’ homes...first fully decentralized phase 2 trial of its scale"

Method could be useful in #MEcfs

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @mecfs

News Release 7-Apr-2025
Does Paxlovid reduce long COVID symptoms? Yale-led trial finds out
Peer-Reviewed Publication
Yale University

Antiviral medications nirmatrelvir/ritonavir (Paxlovid) were not effective in relieving long COVID symptoms, according to a new study published in The Lancet Infectious Diseases on April 3.

The findings came from the Yale Paxlovid for Long COVID (PAX LC) Trial, led by principal investigator Dr. Harlan Krumholz, Harold H. Hines, Jr. Professor of Medicine (Cardiology), and Akiko Iwasaki, Sterling Professor of Immunobiology. The phase 2 investigational new drug clinical trial tested whether a 15-day course of Paxlovid, an FDA-approved antiviral for acute COVID-19, could also help long COVID patients. The PAX LC team pioneered a novel, decentralized design that brought the trial into 100 participants’ homes around the nation. It’s the first fully decentralized phase 2 trial of its scale, the researchers say.

**Tom Kindlon** @tomkindlon@disabled.social · 3d

Tom Kindlon @tomkindlon@disabled.social

News Release 27-Mar-2025
Study finds long Covid patients feel pressure to prove their illness is real

https://www.eurekalert.org/news-releases/1078304

Comment: I have seen some criticisms of the full paper but the press release raises some interesting points

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

News Release 27-Mar-2025
Study finds long Covid patients feel pressure to prove their illness is real
Peer-Reviewed Publication
University of Surrey

People living with Long Covid often feel dismissed, disbelieved and unsupported by their healthcare providers, according to a new study from the University of Surrey.

The study, which was published in the Journal of Health Psychology, looked at how patients with Long Covid experience their illness. The study found that many patients feel they have to prove their illness is physical to be taken seriously and, as a result, often reject psychological support, fearing it implies their symptoms are "all in the mind".

image:

Professor Jane Ogden

**Tom Kindlon** @tomkindlon@disabled.social · 5d

Tom Kindlon @tomkindlon@disabled.social

Different patterns of persistent somatic symptoms after COVID-19 reported by the Dutch media and the general population

https://www.sciencedirect.com/science/article/pii/S0022399924002988

Screenshot from latest Science for ME weekly update

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

Journal of Psychosomatic Research
Different patterns of persistent somatic symptoms after COVID-19 reported by the Dutch media and the general population — Ballering et al.
"heightened exposure to media coverage of a phenomenon amplifies one’s risk perception about it […] it has been argued that nocebo effects are a potentially pivotal driver for post COVID-19 condition." "our findings do not support this."

**Tom Kindlon** @tomkindlon@disabled.social · 6d

Tom Kindlon @tomkindlon@disabled.social

Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, Seltzer):

"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"
https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/

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

**Tom Kindlon** @tomkindlon@disabled.social · Mar 31

Mar 31

Tom Kindlon @tomkindlon@disabled.social

Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open

https://events.mecfs-research.org/en/events/conference_2025

Image is from the latest Science for ME weekly update

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

Germany
Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open. The conference will be centred on the care, research, and treatment of ME/CFS and post-COVID syndrome. It is funded and organised by the German ME/CFS Research Foundation and will take place as an online livestream broadcast from the Harnack House of the Max Planck Society in Berlin.

**Tom Kindlon** @tomkindlon@disabled.social · Mar 27

Mar 27

Tom Kindlon @tomkindlon@disabled.social

Press release from Brazil:
"Even the mild form of #COVID19 tends to cause an imbalance in the cardiovascular system and requires attention"
https://www.eurekalert.org/news-releases/1078107

Full paper:
Impact of @COVID_19 on heart rate variability in #PostCovid ...
https://www.nature.com/articles/s41598-024-82411-w

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

@covid19 #Coronavirus
#COVID #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

News Release 25-Mar-2025
Even the mild form of COVID-19 tends to cause an imbalance in the cardiovascular system and requires attention
In a study of 130 volunteers conducted at the Federal University of São Carlos, a drastic decrease in heart rate variability, i.e. the heart’s ability to adapt to environmental and physiological demands, was observed – up to six weeks after infection

Peer-Reviewed Publication

**Tom Kindlon** @tomkindlon@disabled.social · Mar 25

Mar 25

Tom Kindlon @tomkindlon@disabled.social

Recording with:

- Dr David Joffe: an overview of biological basis of Long COVID

- Dr David Tuller: on basis of psycho-behavioural therapy focusing on the PACE trial & a major #LongCOVID trial"

https://youtu.be/V9f_kjlz6Ho

From latest Science for ME update

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#SARSCoV2 #CovidIsNotOver
@auscovid19 #auscovid19
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Kirby Institute Dr David Joffe & Dr David Tuller - Is Long Covid psycho-behavioural or biological? State of evidence
Recording of a recent and great talk at Kirby Institute, Australia. "In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial."

**Tom Kindlon** @tomkindlon@disabled.social · Mar 24

Mar 24

Tom Kindlon @tomkindlon@disabled.social

From the US:

Altered auditory brainstem responses are post-acute sequela of SARS-CoV-2 (PASC)

https://www.nature.com/articles/s41598-025-93664-4

From the 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 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

Nature Scientific Reports
Altered auditory brainstem responses are post-acute sequela of SARS-CoV-2 (PASC) — Niemczak et al.
"Our findings suggest that PASC may alter the central auditory pathway and lead to slower conduction and elevated auditory neurophysiology responses at the midbrain" "this latency result predicted cognitive fatigue on two independent measures"

**Tom Kindlon** @tomkindlon@disabled.social · Mar 23

Mar 23

Tom Kindlon @tomkindlon@disabled.social

Meeting report. Navigating the path forward for evidence-based management of long COVID

https://www.nature.com/articles/s41590-025-02118-6

From the 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 #CovidIsNotOver
@auscovid19 #auscovid19

Nature Immunology
Meeting report. Navigating the path forward for evidence-based management of long COVID - Breen et al.
The US National Institute of Allergy and Infectious Diseases (NIAID) and the Foundation for the National Institutes of Health (FNIH) held a three-day workshop to assess the landscape of long COVID clinical studies and develop plans for the RECOVER-TLC clinical trials program. This paper provides a summary and overview.

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

Press release:
Long COVID could be costing U.S. $2.0-$6.5 billion annually

https://www.eurekalert.org/news-releases/1077514

Paper (not open access):
https://academic.oup.com/jid/advance-article-abstract/doi/10.1093/infdis/jiaf030/7972782

Comment: I think I have seen higher estimates. Still huge numbers

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

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

From Medscape (widely read by health professionals):

"What Not to Say to People With Complex Chronic Illness"

https://www.medscape.com/viewarticle/what-not-say-people-complex-chronic-illness-2025a10006ft
(may require free registration)

**Tom Kindlon** @tomkindlon@disabled.social · Mar 19

Mar 19

Tom Kindlon @tomkindlon@disabled.social

Evidence synthesis – Global prevalence of post-COVID-19 condition: a systematic review and meta-analysis of prospective evidence

https://www.canada.ca/en/public-health/services/reports-publications/health-promotion-chronic-disease-prevention-canada-research-policy-practice/vol-45-no-3-2025/global-prevalence-post-covid-19-condition-systematic-review-meta-analysis-prospective-evidence.html

From the 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 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

HPCDP Journal
Evidence synthesis – Global prevalence of post-COVID-19 condition: a systematic review and meta-analysis of prospective evidence — Taher et al
"Our analysis revealed that more than half of COVID-19 survivors experienced one or more symptoms more than a year after their initial infection. The most common symptoms were fatigue; dyspnea; memory, sleep or concentration disturbances; depression; and pain. Limitation in returning to work was the most common outcome."

**Tom Kindlon** @tomkindlon@disabled.social · Mar 19

Mar 19

Tom Kindlon @tomkindlon@disabled.social

Leukocyte telomere length and telomerase activity in Long COVID patients from Rio de Janeiro, Brazil

https://memorias.ioc.fiocruz.br/article/11040/0129-leukocyte-telomere-length-and-telomerase-activity-in-long-covid-patients-from-rio-de-janeiro-brazil

"The Long COVID patients were found to have an increase in LTL [leukocyte telomere length]."

From the 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

Journal Of Microbes & Their Vectors Causing Human Infections
Leukocyte telomere length and telomerase activity in Long COVID patients from Rio de Janeiro, Brazil — Gonçalves dos Reis et al.
"Even taking into account the small number of Long COVID patients and controls recruited for the telomerase activity assay, the finding of telomerase activity in this group of Long COVID patients was surprising." "Re-activation of telomerase is the most likely explanation for the elongation of telomeres in Long COVID patients."

**Tom Kindlon** @tomkindlon@disabled.social · Mar 19

Mar 19

Tom Kindlon @tomkindlon@disabled.social

Press release for a new UK study:

"Nearly one in ten unsure if they have Long Covid. Almost 5% have the condition and socially disadvantaged groups are most affected"
https://www.eurekalert.org/news-releases/1076866

Free paper:
https://onlinelibrary.wiley.com/doi/10.1111/hex.70202

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

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

News Release 17-Mar-2025
Nearly one in ten unsure if they have Long Covid
Almost 5% have the condition and socially disadvantaged groups are most affected

Peer-Reviewed Publication
University of Southampton

Facebook X LinkedIn WeChat Bluesky Message WhatsApp Email
UNDER EMBARGO UNTIL 00:01 AM UK TIME ON TUESDAY 18 MARCH 2025

Almost one in ten people (9.1%) in England think they could have Long Covid but aren’t sure, according to a new analysis of NHS England survey data by the University of Southampton.

**Tom Kindlon** @tomkindlon@disabled.social · Mar 18

Mar 18

Tom Kindlon @tomkindlon@disabled.social

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

https://www.jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

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

Journal of Medical Internet Research
Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel
"The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR"

**Tom Kindlon** @tomkindlon@disabled.social · Mar 18

Mar 18

Tom Kindlon @tomkindlon@disabled.social

Unveiling the Immune Landscape of COVID-19 and prolonged Long-COVID through Single-Cell RNA Sequencing

https://www.biorxiv.org/content/10.1101/2025.03.05.641671v1

From the latest Science for ME weekly update

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

Preprint: BioRxiv
Unveiling the Immune Landscape of COVID-19 and prolonged Long-COVID through Single-Cell RNA Sequencing — Marta Līva Spriņģe et al.
"Differentially expressed genes and the involvement of the innate immune system regulation, though widely documented in severe acute COVID-19 cases, may play a part in the development or persistence of Long-COVID, as highlighted by the outcomes of this investigation."

**Tom Kindlon** @tomkindlon@disabled.social · Mar 17

Mar 17

Tom Kindlon @tomkindlon@disabled.social

Five years of Long Covid

Links:
NBC News
https://www.nbcnews.com/health/health-news/5-years-later-long-covid-still-medical-mystery-scientists-learned-rcna195608

US News and World Report:
https://www.usnews.com/opinion/articles/2025-03-10/covid-pandemic-vaccines-measles

Rolling Stone:
https://www.rollingstone.com/culture/culture-features/long-covid-five-years-1235296375/

https://www.s4me.info/threads/news-from-the-usa-united-states-of-america.20771/page-36#post-593840

From the 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 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

Five years of Long Covid

The five year anniversary of the start the COVID-19 pandemic has prompted several media outlets to publish stories on Long Covid.

NBC News: 5 years later, long Covid is still a medical mystery: What scientists have learned

US News and World Report: 5 Years Since the COVID-19 Pandemic, Millions Like Me Are Still Sick

Rolling Stone: Five Years of Pain, Fatigue, and Gaslighting: Life With Long Covid

More stories in this Thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 16

Mar 16

Tom Kindlon @tomkindlon@disabled.social

Summary of the #UniteToFight2024 conference [first international conference on Long Covid and ME/CFS] by @katha1970

https://padlet.com/katha1970_/personal-collection-of-information-for-patients-with-complex-p20bhx4pb54x1may/wish/2998552241

Summary of the #UniteToFight2024 conference by @katha1970 (on Twi@er/X)
___________________________________________________________________________________________
version 5, last update: June 5th, 2024- 1 -
First International Conference on Long Covid and ME/CFS #UniteToFight2024
marks a turning point in efforts to combat this massive global health crisis
affecting more than 100 million people
Leading scientists, doctors and patients from around the world joined forces at the #UniteToFight2024
online conference on Long Covid and ME/CFS, which was held on May 15th and 16th, 2024, in searching
solutions on how to combat the massive global health crisis associated with these highly debilitating
diseases affecting already far more than 100 million people worldwide for both diseases combined, with
many more hundreds of millions of new cases expected in the next few years.
With a record number of more than 10.000 registered participants and including the most renowned
experts in both fields, this community-driven and solely crowd-funded conference marked a milestone and
a turning point, giving hope to countless patients around the world desperately waiting for help.

**Tom Kindlon** @tomkindlon@disabled.social · Mar 14

Mar 14

Tom Kindlon @tomkindlon@disabled.social

From Cyprus:

Long-COVID from the perspective of neurologists at the outpatient clinic: A cross-sectional field study

https://www.tandfonline.com/doi/full/10.1080/01616412.2025.2472824

From the latest Science for ME weekly update

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

Neurological Research
Long-COVID from the perspective of neurologists at the outpatient clinic: A cross-sectional field study — Artemios Artemiadis et al.
"In this small cross-sectional study, our aim was to delineate the symptom patterns among Long-COVID patients referred to an outpatient Neurological clinic and assess their impact on psychological, sleep, and overall well-being. Fatigue emerged as the most frequently reported symptom, followed by anxiety, myalgias, and concentration difficulties."

**Tom Kindlon** @tomkindlon@disabled.social · Mar 14

Mar 14

Tom Kindlon @tomkindlon@disabled.social

Disappointing to see this individual getting more publicity, this time in the Irish Independent. I'm not aware of any peer-reviewed publications of hers on long Covid.

Paywall:
https://www.independent.ie/entertainment/books/book-reviews/adhd-is-a-business-as-well-as-a-medical-disorder-irish-doctor-on-the-dangers-of-overdiagnosis/a586398049.html

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

‘ADHD is a business as well as a medical disorder’: Irish doctor on the dangers of overdiagnosis
Dr Suzanne O’Sullivan examines the rise in recorded cases of autism, ADHD and long Covid, and how labels can bring new problems
people with symptoms of long Covid at a US congressional hearing in 2023. Dr O'Sullivan thinks the condition is "problematic". Photo Drew Angerer/Getty Images

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