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**Tom Kindlon** @tomkindlon@disabled.social · 1d

Tom Kindlon @tomkindlon@disabled.social

"the results from this analysis suggest among people who were tested for #COVID19, those with a positive test experienced an increased rate of diagnosis of infectious illnesses in the 12 months following"

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2824%2900831-4/abstract

Image is from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID #COVID_19 #COVIDー19 #SARSCoV2
@auscovid19 #auscovid19

The Lancet Infectious Diseases
Rates of infection with other pathogens after a positive COVID-19 test versus a negative test in US veterans (November, 2021, to December, 2023): a retrospective cohort study — Miao Cai et al.
"the results from this analysis suggest that among people who were tested for COVID-19, those with a positive test experienced an increased rate of diagnosis of infectious illnesses in the 12 months following"

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

Tom Kindlon @tomkindlon@disabled.social

"Could GP's understanding and management of Long Covid and ME be improved by conceptualising those conditions in terms of 'premature frailty'?" by Dr Elke Hausmann

https://bjgplife.com/could-gps-understanding-and-management-of-long-covid-and-me-be-improved-by-conceptualising-those-conditions-in-terms-of-premature-frailty/

Image is from latest Science for ME weekly update

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

Could GP's understanding and management of Long Covid and ME be improved by conceptualising those conditions in terms of 'premature frailty'?
Written by Elke Hausmann. "What I am proposing is a different way of looking at Long Covid and ME that might engender a better understanding and more compassion in GPs for patients living with these devastating and life changing conditions."

**Tom Kindlon** @tomkindlon@disabled.social · Apr 2

Apr 2

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 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 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

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

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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 13

Mar 13

Tom Kindlon @tomkindlon@disabled.social

From Iraq:

Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0316373

From the latest Science for ME weekly update

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

PLOS ONE
Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID — Wasim Talib Mahdi Al Masoodi et al.
"a sizable portion of the variation in the physioaffective phenome was accurately predicted by a combination of biomarkers, including GALGALR1 signaling, CRP, PGE2, and z PBT - z SpO2"

**Tom Kindlon** @tomkindlon@disabled.social · Mar 13

Mar 13

Tom Kindlon @tomkindlon@disabled.social

(Australia-wide survey)
Are you someone who is experiencing, treating or caring for someone with ME/CFS and/or #LongCovid ?

"The Australian e-Health Research Centre at CSIRO ... is conducting a survey to understand the research priorities of the community"

Link:
https://csiro.qualtrics.com/jfe/form/SV_50apVQ5MHXTReBw

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@auscovid19 #auscovid19

Are you living with, caring for, or treating someone with Long COVID or Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS)?
We want to hear from you!
The Australian E-Health Research Centre (AEHRC) and Monash University have partnered with Emerge Australia to conduct a study seeking to understand the research priorities of people living with, caring for, or treating someone with Long COVID or ME/CFS. We also want to understand the major challenges they currently face in accessing quality care.
M=
The AEHRC, Monash University and Emerge Australia are currently recruiting participants aged 18 years or older to participate in an online survey which is expected to take around 15 minutes to complete. Participants will also have the option of participating in a further interview, should they choose, expected to take around 30 minutes. The interview can be undertaken over multiple sessions is needed or via email response.
Participation is voluntary and you do not have to take part if you don't want to. You can choose to participate in only the survey if you wish.
For additional information about the project please click the link below to view the Participant Information Sheet and access the survey.
Access the information sheet and survey here
Australian e-Health
CSIRO Research Centre
MONASH University
emerge
australia
Contact Person:
Dr Alana Delaforce, Australian E-Health Research Centre, alana.delaforce@csiro.au 296 Herston Road, Herston, Qld, 4029 P: 07 3253 3647

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

Feb 25

Tom Kindlon @tomkindlon@disabled.social

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

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.

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

Feb 16

Tom Kindlon @tomkindlon@disabled.social

"Now offline: Government resources about Long COVID as a disability" by Betsy Ladyzhets

https://thesicktimes.org/2025/02/11/now-offline-government-resources-about-long-covid-as-a-disability/

Screenshot from latest Science for ME weekly update

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

The Sick Times "Now offline: Government resources about Long COVID as a disability"
Discusses the deletion of Long Covid disability information from some US government websites. Similar information about ME/CFS, POTS, and Lyme disease was not deleted. However, current law has not changed and "people with Long COVID are still legally entitled to accommodations."

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

Feb 14

Tom Kindlon @tomkindlon@disabled.social

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

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.

**Tom Kindlon** @tomkindlon@disabled.social · Feb 11

Feb 11

Tom Kindlon @tomkindlon@disabled.social

2-minute video clip from ABC (Australian national TV) plus longer text piece on ME Research UK-funded study

" #LongCOVID [& ME/CFS] patients show brain swelling linked to memory and concentration problems, study finds"

https://www.abc.net.au/news/2025-02-11/long-covid-brain-swelling-memory-problems-research-queensland/104917572

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe
@auscovid19 #auscovid19

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

Jan 24

Tom Kindlon @tomkindlon@disabled.social

New press release:

"Long COVID, Italian scientists discovered the molecular ‘fingerprint’ of the condition in children's blood"
https://www.eurekalert.org/news-releases/1071370

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
#LongCovidKids #LCKids

News Release 24-Jan-2025
Long COVID, Italian scientists discovered the molecular ‘fingerprint’ of the condition in children's blood
Peer-Reviewed Publication
Universita Cattolica del Sacro Cuore

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One day Long Covid in children could be objectively diagnosed with a blood test, thanks to the help of Artificial Intelligence (AI). In fact, a study by the Università Cattolica del Sacro Cuore, Rome campus - Fondazione Policlinico Universitario Agostino Gemelli IRCCS and the Ospedale Pediatrico Bambino Gesù IRCCS, has highlighted the molecular signature of Long Covid in plasma in paediatric age and used an AI tool capable of making the diagnosis based on the results of the blood sample, with 93% accuracy.

The study was published in the journal ‘Pediatric Research’, by Nature Group, and was led by Dr. Danilo Buonsenso, researcher in general and specialist paediatrics at the Faculty of Medicine and Surgery of the Catholic University and paediatrician at the Pediatric Infectious Diseases Operative Unit of the Fondazione Policlinico Gemelli IRCCS, together with Dr. Nicola Cotugno, at the Complex Operative Unit of Clinical Immunology and Vaccinology of the Bambino Gesù IRCCS Paediatric Hospital.

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

Jan 19

Tom Kindlon @tomkindlon@disabled.social

"Meet the Americans who still take COVID-19 precautions seriously"

https://www.news10.com/news/national/ap-vulnerable-americans-live-in-the-shadow-of-covid-19-as-most-move-on/

Image is 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 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19
@chronicillness
@spoonies
@disability
#neisvoid
#chronicillness
#chroniclife

USA News10 ABC Meet the Americans who still take COVID-19 precautions seriously
On clinically vulnerable patients (including an ME patient and a carer) shielding from Covid-19. Researcher Leonard Jason says trauma is part of the experience of chronic illness, and then there's additional traumatisation by the societal reaction to the illness. Researcher Akiko Iwasaki is also taking precautions and says: "I just can't afford to get sick and become chronically ill".

Replied in thread

**Tom Kindlon** @tomkindlon@disabled.social · Jan 13

Jan 13

Tom Kindlon @tomkindlon@disabled.social

3/
The NIH have sent out a press release. Hopefully this will lead to a lot of coverage.

"NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2"

https://www.nih.gov/news-events/news-releases/nih-funded-study-finds-cases-me/cfs-increase-following-sars-cov-2

#MEcfs #LongCovid
@mecfs @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

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Jan 13

Jan 13

Tom Kindlon @tomkindlon@disabled.social

2/
Blog post on this study "#COVID19 Triggers ME/CFS" by Suzanne D. Vernon, PhD

https://batemanhornecenter.org/covid-19-triggers-me-cfs/

"531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly 8 times higher than uninfected participants"

@mecfs #MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #auscovid19

Replied in thread

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

Jan 6

Tom Kindlon @tomkindlon@disabled.social

3/
Press release from UCSF:

Extended Paxlovid may help some people with long COVID

https://www.eurekalert.org/news-releases/1069265

"An extended course of Paxlovid appears to help some patients with #longCovid , according to a case series by UC San Francisco researchers"

@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@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

News Release 6-Jan-2025
Extended Paxlovid may help some people with long COVID
Peer-Reviewed Publication
University of California - San Francisco

An up-close look at how patients respond to the drug at different times and doses adds nuance to a recent finding that Paxlovid does not work for long Covid.

An extended course of Paxlovid appears to help some patients with long Covid, according to a case series by UC San Francisco researchers that suggests this treatment option holds promise for some of those struggling with debilitating symptoms.

These results are at odds with recent research that has failed to show the antiviral can alleviate persistent symptoms of the disease. The authors said more study is needed to find out which patients may benefit from the drug and how long it should be given.

Continued thread

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

Jan 6

Tom Kindlon @tomkindlon@disabled.social

2/
Plain language summary:

Impact of extended-course oral nirmatrelvir/ritonavir [Paxlovid] in established #LongCOVID : a case series

https://www.nature.com/articles/s43856-024-00668-8

Comment: I don't find this sort of trial design that convincing but perhaps there is a signal of benefit there.

Plain language summary
Long COVID is an infection-associated chronic condition in which symptoms persist more than 12 weeks after an acute COVID-19 infection. Prior reports suggest that a 5-day course of oral Paxlovid (nirmatrelvir/ritonavir) may help some people with Long COVID, but there have not yet been any reports of people with Long COVID trying extended courses of nirmatrelvir/ritonavir. Our patient-led study documents the experiences of 13 people with Long COVID who tried extended courses of Paxlovid; some were in the midst of a reinfection and others were not. Some participants reported meaningful benefits, although not all improvements lasted long-term. Others experienced no changes in symptoms. Our results suggest that extended courses of nirmatrelvir/ritonavir could be beneficial for some people with Long COVID.

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

Jan 6

Tom Kindlon @tomkindlon@disabled.social

New US research:

Impact of extended-course oral nirmatrelvir/ritonavir [Paxlovid] in established Long COVID: a case series

https://www.nature.com/articles/s43856-024-00668-8

"Extended courses of nirmatrelvir/ritonavir may have meaningful benefits for some people with #LongCOVID but not others"

**Tom Kindlon** @tomkindlon@disabled.social · Dec 31, 2024

Dec 31, 2024

Tom Kindlon @tomkindlon@disabled.social

"At all 3 time points...the long COVID persistent group showed a statistically significant difference in absolute presenteeism compared with the non-long COVID & long COVID recovered groups"

https://www.sciencedirect.com/science/article/pii/S2772707624001644

Image is from latest Science for ME weekly update

Hashtags:
@longcovid
#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

The relationship between long COVID, labor productivity, and socioeconomic losses in Japan: A cohort study — Konishi et al.
"29.3% of all the patients continued to experience long COVID symptoms 1 year after diagnosis. At all three time points (3, 6, and 12 months after diagnosis), the long COVID persistent group showed a statistically significant difference in absolute presenteeism compared with the non-long COVID and long COVID recovered groups (P <0.01)."

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