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#postCOVID19

13 posts6 participants1 post today
Public
Tom Kindlon

A huge amount of dissatisfaction and not much satisfaction regarding "NHS experience and specialist visits" from people with ME/CFS and to a slightly lesser extent people with long Covid in the UK

From:
bmjopen.bmj.com/content/15/4/e

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

Figure 1 NHS experience and specialist visits. This figure presents responses regarding NHS experiences and access to specialist care for individuals with ME/CFS and long COVID. It categorises overall satisfaction with NHS services (very poor, poor, mixed, good, excellent) and illustrates the frequency of specialist visits, highlighting challenges in accessing specialised care. ME/CFS, myalgic encephalomyelitis/chronic fatigue syndrome; NHS, National Health Service.
Public
Tom Kindlon

From India:
Early biomarkers in hospitalized patients as predictors of post-acute sequelae of SARS-CoV-2 infection: a one-year cohort study

bmcinfectdis.biomedcentral.com

Image is 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

BMC Infectious Diseases Early biomarkers in hospitalized patients as predictors of post-acute sequelae of SARS-CoV-2 infection: a one-year cohort study — Nair et al. "A cohort of 120 adult patients, including 50 intensive care and 70 non-intensive care patients, was followed up at two weeks, six weeks, and one-year post-discharge using structured questionnaires. The study integrated comorbidities and laboratory biomarkers to forecast the risk for PASC."
Public
Tom Kindlon

🧵
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"
salon.com/2025/04/01/admins-on

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

1/

Salon logo Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS By Elizabeth Hlavinka Staff Writer Published April 1, 2025 5:30AM (EDT) Updated April 1, 2025 12:55PM (EDT)
Public
Tom Kindlon

Press release:
"Pregnancy may reduce long COVID risk"
eurekalert.org/news-releases/1

Long COVID after SARS-CoV-2 During Pregnancy in the United States
nature.com/articles/s41467-025

I personally would find this more interesting if this related to the ME-CFS/similar subgroup rather than a mixed LC group

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

@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

News Release 1-Apr-2025 Pregnancy may reduce long COVID risk Peer-Reviewed Publication Weill Cornell Medicine Pregnancy may offer some protection from developing Long COVID, found a new study led by Weill Cornell Medicine, University of Rochester Medical Center, University of Utah Health and Louisiana Public Health Institute. Previous research has mostly focused on non-pregnant adults affected by Long COVID— a condition lasting for months after a person recovers from SARS-CoV-2 infection. The study, published April 1 in Nature Communications, helps fill a critical gap about Long COVID in women infected with SARS-CoV-2 during pregnancy. “This population is so important and vulnerable, but we had no evidence about their Long COVID risk to guide their care,” said Dr. Chengxi Zang, an instructor in population health sciences at Weill Cornell Medicine, who co-led the research. “We hope this new data will help clinicians develop better Long COVID prevention and treatment strategies for pregnant women and help those most at risk.”
Public
Tom Kindlon

The US administration has proposed many cuts that may affect ME/CFS or #LongCovid research

Image is from latest Science for ME weekly update

Links:

science.org/content/article/sa

scientificamerican.com/article

thesicktimes.org/2025/03/28/up

fiercebiotech.com/research/stu

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #postcovid #postcovid19 #PostCovidSyndrome #COVIDBrain
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #CovidIsNotOver
@auscovid19

USA - The current administration has proposed many cuts to the NIH and other departments. Cuts or closures may affect ME/CFS or Long Covid research. The final decision on some cuts is still pending. Science "Saying ‘pandemic is over,’ NIH starts cutting COVID-19 research" Article | Thread Scientific American "HHS’s Long COVID Office Is Closing. What Will This Mean for Future Research and Treatments?" Article | Thread The Sick Times "UPDATE: RECOVER Long COVID pathobiology grants restored" Article | Thread Fierce Healthcare 'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue research in limbo Article | Thread
Public
Tom Kindlon

"Research finds potential “molecular mimics” behind #COVID -induced #autoimmune disease"

eurekalert.org/news-releases/1

“some of the human proteins the researchers identified as likely targets of COVID-induced #autoimmunity are only found in people with specific genetics”

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome @covid19 #Coronavirus
#COVID19 #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

News Release 26-Mar-2025 Research finds potential “molecular mimics” behind COVID-induced autoimmune disease Peer-Reviewed Publication University of Utah Health COVID infection has been linked to higher risk of autoimmune disorders, including rheumatoid arthritis and type 1 diabetes. But why the virus might cause the body’s immune system to go haywire remains unknown, making it difficult to develop therapies to avoid autoimmunity. One hypothesis is that viral “molecular mimics” that resemble the body’s own proteins trigger an immune response against the virus—and healthy tissues get caught in the crossfire.
Public
Tom Kindlon

Mark Vink is amazing to be able to do papers like this while bedbound with ME 👏

"Are CBT and a group physical and mental health rehabilitation programme effective treatments for long COVID? Rethinking of a systematic review"

researchgate.net/profile/Mark-

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

Screenshot of abstract
Public
Tom Kindlon

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"

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."
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