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Notices by Tom Kindlon (tomkindlon@disabled.social), page 2

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Tom Kindlon (tomkindlon@disabled.social)'s status on Saturday, 15-Feb-2025 22:16:53 JST Tom Kindlon
in reply to

2/
50-second video from Griffith University:
“Striking brain similarities have been detected in patients who experience Long COVID and ME/CFS”
https://youtu.be/YrDwsciPbTA
#MEcfs #LongCovid
@mecfs @longcovid @covid19 @novid@chirp.social @novid@a.gup.pe @auscovid19

In conversation about a year ago from disabled.social permalink
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 10-Feb-2025 12:43:47 JST Tom Kindlon

Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome
Link:
https://retractionwatch.com/2025/01/23/thousands-demand-withdrawal-of-review-article-recommending-exercise-therapy-for-chronic-fatigue-syndrome/
Image is from free AMMES February 2025 e-newsletter
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
In conversation about a year ago from disabled.social permalink
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1. Photo of a woman collapsed on a treadmill with the following text Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome The decision to abandon a process to re-evaluate a review recommending exercise therapy for chronic fatigue syndrome (ME/CFS) has reignited calls for the article to be withdrawn. The 2019 version of the Cochrane Library review, “Exercise therapy for chronic fatigue syndrome,” has accumulated 67 citations, according to Clarivate’s Web of Science Read more here>>
  https://assets.disabled.social/media_attachments/files/113/977/040/205/925/769/original/b2cf51fe6af69979.png
2. Domain not in remote thumbnail source whitelist: retractionwatch.com
  
  image
  
  from Ivan Oransky
  
  Visit the post for more.
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 10-Feb-2025 03:24:17 JST Tom Kindlon

(Repeat)
Most Troubling Symptoms in ME/CFS and Long COVID Patients. The bar graph shows the frequency of symptoms reported by patients with ME/CFS (blue) & #LongCOVID (red)
From:
"Patient-Reported Treatment Outcomes in ME/CFS and Long COVID"
https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1.full.pdf
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
In conversation about a year ago from disabled.social permalink
Attachments
1. Domain not in remote thumbnail source whitelist: www.medrxiv.org
  
  | medRxiv
  
  medRxiv - The Preprint Server for Health Sciences
2. Figure 1. Most Troubling Symptoms in ME/CFS and Long COVID Patients. The bar graph shows the frequency of symptoms reported by patients with ME/CFS (blue) and Long COVID (red), ordered based on the frequency in Long COVID patients.
  https://assets.disabled.social/media_attachments/files/113/975/041/412/670/823/original/90dbd8311f361273.jpg
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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 21-Jan-2025 08:16:01 JST Tom Kindlon

New research from the US:
Association between chronic fatigue syndrome/myalgic encephalomyelitis and cardiovascular disease
https://www.nature.com/articles/s41598-025-86609-4
"Patients with CFS/ME need close evaluation for CVD [cardiovascular disease]"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
In conversation about a year ago from disabled.social permalink
Attachments
1. Screenshot of abstract
  https://assets.disabled.social/media_attachments/files/113/862/981/670/828/845/original/9be8f05e1b47b21b.png
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 20-Jan-2025 19:11:45 JST Tom Kindlon

New from Spain:
SARS-CoV-2 Viral Load and Cytokine Dynamics Profile as Early Signatures of Long COVID Condition in Hospitalized Individuals
https://onlinelibrary.wiley.com/doi/10.1111/irv.70068
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
In conversation about a year ago from disabled.social permalink
Attachments
1. SARS-CoV-2 Viral Load and Cytokine Dynamics Profile as Early Signatures of Long COVID Condition in Hospitalized Individuals — Jacobo Alonso Domínguez et al. "our study provides an early signature that highlights the different profiles in [viral load] and cytokine dynamics from the onset of infection and the following weeks between individuals who develop long COVID and those who do not."
  https://assets.disabled.social/media_attachments/files/113/857/467/998/466/512/original/645c753a51795c20.png
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 20-Jan-2025 19:08:30 JST Tom Kindlon

New from Germany:
Neurological post-COVID syndrome is associated with substantial impairment of verbal short-term and working memory
https://www.nature.com/articles/s41598-025-85919-x
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
In conversation about a year ago from disabled.social permalink
Attachments
1. Neurological post-COVID syndrome is associated with substantial impairment of verbal short-term and working memory — Charles James et al. "We found that PCS patients with neurologic symptoms were impaired in working memory and attention. Of note, we performed the TAP test twice during the neuropsychological assessment revealing significantly longer reaction times at the second investigation, potentially reflecting a consequence of cognitive fatiguability."
  https://assets.disabled.social/media_attachments/files/113/857/281/615/234/732/original/9b540f3134eece59.png
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 20-Jan-2025 19:06:43 JST Tom Kindlon

"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

In conversation about a year ago from disabled.social permalink
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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 14-Jan-2025 17:11:05 JST Tom Kindlon

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
In conversation about a year ago from disabled.social permalink
Attachments
1. NIH logo News Releases Media Advisory Monday, January 13, 2025 NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2 What New findings from the National Institutes of Health’s (NIH) Researching COVID to Enhance Recovery (RECOVER(link is external)) Initiative suggest that infection with SARS-CoV-2, the virus that causes COVID-19, may be associated with an increase in the number of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases. According to the results, 4.5% post-COVID-19 participants met ME/CFS diagnostic criteria, compared to 0.6% participants that had not been infected by SARS-CoV-2 virus. RECOVER is NIH’s national program to understand, diagnose, prevent, and treat Long COVID.
  https://assets.disabled.social/media_attachments/files/113/823/281/011/752/370/original/cf3c939e9da3628d.png
2. Domain not in remote thumbnail source whitelist: www.nih.gov
  
  NIH-funded study finds cases of ME/CFS increase following SARS-CoV-2
  
  ME/CFS is a complex, serious, and chronic condition that often occurs following an infection.
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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 14-Jan-2025 17:10:37 JST Tom Kindlon
in reply to

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
In conversation about a year ago from disabled.social permalink
Attachments
1. Domain not in remote thumbnail source whitelist: batemanhornecenter.org
  
  COVID-19 Triggers ME/CFS
  
  The emergence of SARS-CoV-2, the virus responsible for COVID-19, swept across the globe with an unparalleled speed and severity. As a researcher dedicated to understanding how viral infections lead to…
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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 14-Jan-2025 17:10:37 JST Tom Kindlon

New US research
Incidence & Prevalence of Post‑COVID‑19 Myalgic Encephalomyelitis:A Report from the Observational
RECOVER‑Adult Study
https://link.springer.com/article/10.1007/s11606-024-09290-9
"ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection"
@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #longhaulers #COVIDBrain
@covid19 #Coronavirus
#COVID19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19
In conversation about a year ago from disabled.social permalink
Attachments
1. Screenshot of abstract
  https://assets.disabled.social/media_attachments/files/113/822/014/199/699/713/original/28a1265226f25293.png
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 13-Jan-2025 01:43:41 JST Tom Kindlon

"Hope fades for proposed Long COVID research investment a year after patients pack U.S. Senate"
https://kstp.com/kstp-news/top-news/hope-fades-for-proposed-long-covid-research-investment-a-year-after-patients-pack-u-s-senate/
An update on proposed #LongCovid legislation that would "appropriate a billion dollars annually through 2034" to go toward research on "Long #COVID & other infection-associated chronic conditions”
@longcovid
#PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID_19 #SARSCoV2 #CovidIsNotOver #auscovid19
In conversation about a year ago from disabled.social permalink
Attachments
1. Domain not in remote thumbnail source whitelist: kstp.com
  
  An active weather pattern begins this weekend
  
  from Tracy Maher
  
  Skies remain cloudy this afternoon with snowflakes developing through the afternoon, especially north of the metro. As steady snow flies north, it’s possible for freezing drizzle to fall south of it, which could create more slick spots across the metro headed into the weekend.
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 09-Dec-2024 05:56:27 JST Tom Kindlon

Switzerland:
SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%.
Google translation:
https://www-srf-ch.translate.goog/sendungen/kassensturz-espresso/kassensturz/long-covid-und-me-cfs-falsche-behandlungen-in-reha-kliniken?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
#MEcfs #CFS #PwME #LongCovid #PASC #PwLC @mecfs @longcovid #mecfs_de @mecfs_de
In conversation about a year ago from disabled.social permalink
Attachments
1. Domain not in remote thumbnail source whitelist: www.srf.ch
  
  Long Covid und ME/CFS: Falsche Behandlungen in Reha-Kliniken
  
  Reha-Aufenthalte sind für viele Menschen mit schwerem Long Covid und ME/CFS schädlich. Das zeigt eine aktuelle Umfrage.
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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 03-Dec-2024 10:25:36 JST Tom Kindlon

On International Day of #People with #Disabilities, please note some disabilities are #invisible
#invisibleillness #disabled #disabledpeople #DisabilityRights #DisabilityRightsAreHumanRights
#IDPD #IDPD2024 #IDPD24 #IDPWD #IDPWD24 #IDPWD2024 #Disability @chronicillness
@spoonies
@disability
@mecfs @longcovid
#LongCovid #MEcfs #CFS #PwME
In conversation about a year ago from disabled.social permalink
Attachments
1. 5 stick images of people. In the first 4, the person has a disability aid but the fifth one does not. Text: some disabilities look like this some like this
  https://assets.disabled.social/media_attachments/files/113/585/988/263/416/763/original/e6a728ece6cf1c91.jpg
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Tom Kindlon (tomkindlon@disabled.social)'s status on Friday, 16-Aug-2024 20:30:19 JST Tom Kindlon

The AusME Biobank relies on your blood to further its mission to advance medical research outcomes for ME/CFS and #LongCOVID! If you reside in Victoria or NSW and have ME/CFS or are willing to donate blood as a healthy volunteer, find out how you can become an AusME Biobank blood donor by visiting: https://www.ausmeregistry.org
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
@auscovid19 #auscovid19 #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #PASC
In conversation Friday, 16-Aug-2024 20:30:19 JST from disabled.social permalink
Attachments
1. EVERY DROP MATTERS FOR ME/CFS. Donate a blood sample to the Australian ME/CFS & Long COVID (AusME) Biobank You hold the key in advancing our understanding of ME/CFS. emerge australia ME/CFS RESEARCH CAN ONLY GO SO FAR WITHOUT YOUR HELP
  https://assets.disabled.social/media_attachments/files/112/971/275/372/725/813/original/6b6ebb55a3a05f0c.jpg
2. Domain not in remote thumbnail source whitelist: ausmeregistry.org
  
  Landing Page (Home) #2
  
  from Jonathan stavridis
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Tom Kindlon (tomkindlon@disabled.social)'s status on Friday, 26-Jul-2024 17:58:54 JST Tom Kindlon

Long COVID Physio: Exercise (8-minute video)
"In this video we describe exercise and how it is not the right medicine for many people living with #LongCOVID and other complex chronic and energy limiting conditions like ME/CFS."
https://longcovid.physio/long-covid-video-series/exercise
@longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
#PEM #PESE #MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
1/
In conversation Friday, 26-Jul-2024 17:58:54 JST from disabled.social permalink
Attachments
1. Long COVID Physio The final episode of the #LongCOVID Video Series is now live 🎥🤩🎬🍿 #Exercise Check out the video, audio only version, transcript, details on how to turn on translated closed captions, the team involved in creating this video, and how to access the full video series, by clicking the link👇
  https://assets.disabled.social/media_attachments/files/112/850/098/399/470/982/original/3f4079fe02821bed.png
2. Untitled attachment
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Tom Kindlon (tomkindlon@disabled.social)'s status on Wednesday, 17-Jul-2024 14:26:43 JST Tom Kindlon

Data-independent LC-MS/MS analysis of ME/CFS plasma reveals a dysregulated coagulation system, endothelial dysfunction, downregulation of complement machinery
https://cardiab.biomedcentral.com/articles/10.1186/s12933-024-02315-x
"The findings from this experiment further implicate the coagulation & immune system in #MECFS"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
In conversation Wednesday, 17-Jul-2024 14:26:43 JST from disabled.social permalink
Attachments
1. Graphical abstract
  https://assets.disabled.social/media_attachments/files/112/799/115/649/037/266/original/dd748012fb514e30.webp
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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 25-Jun-2024 11:07:00 JST Tom Kindlon

"We've Hit Peak Denial. Here's Why We Can't Turn Away From Reality"
https://www.scientificamerican.com/article/weve-hit-peak-denial-heres-why-we-cant-turn-away-from-reality/
Opinion piece asking why we overlook bad things, "especially in this scientific and technological age, when we’ve never been more capable of understanding and addressing them".
---
@longcovid
#LongCovid #PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain
@covid19 #Coronavirus
#COVID19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
#auscovid19
1/
In conversation Tuesday, 25-Jun-2024 11:07:00 JST from disabled.social permalink
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1. Untitled attachment
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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 11-Jun-2024 00:53:36 JST Tom Kindlon

ME/CFS San Diego have created this 2-page leaflet that can be printed out
Black & White version:
https://drive.google.com/file/d/113QbnjMQQGkHRFPfI2FGc9jjFX-ZxM2N/view?usp=sharing
Full-colour version:
https://drive.google.com/file/d/1KYTXxSbMjKKugDbbjPPUljDdhKNEE-bW/view?usp=sharing
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
1/2
In conversation Tuesday, 11-Jun-2024 00:53:36 JST from disabled.social permalink
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 10-Jun-2024 07:43:08 JST Tom Kindlon

#MEcfs #PwME #LongCovid #Spoonie #ChronicallyIll #ChronicPain #chronicillness @chronicillness
@spoonies
@disability
@longcovid @mecfs
In conversation Monday, 10-Jun-2024 07:43:08 JST from disabled.social permalink
Attachments
1. "You're not wasting a day by resting You're enabling yourself to feel better tomorrow" Image of a cat with a mug of a hot drink Artist: The Latest Kate
  https://assets.disabled.social/media_attachments/files/112/587/803/372/449/481/original/e1f44d060b0b1afe.jpg
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Tom Kindlon (tomkindlon@disabled.social)'s status on Sunday, 17-Mar-2024 08:57:55 JST Tom Kindlon

Coagulation profile in hospitalized children with COVID-19: pediatric age dependency and its impact on long COVID development
Free full text
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1363410/full
#LongCovidKids @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #CovidBrain @auscovid19
1/
In conversation Sunday, 17-Mar-2024 08:57:55 JST from disabled.social permalink
Attachments
1. Domain not in remote thumbnail source whitelist: www.frontiersin.org
  
  Frontiers | Coagulation profile in hospitalized children with COVID-19: pediatric age dependency and its impact on long COVID development
  
  IntroductionPulmonary endotheliopathy and microvascular immunothrombosis play a key role in acute COVID-19. Moreover, persistent endotheliopathy and heighten...

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95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 34 years, housebound 28 years. Health has deteriorated post Covid (March 2022). Irish ME/CFS Association* trustee 26 years.  26 publications in peer-reviewed journals. MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon  #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie

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