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Notices by Tom Kindlon (tomkindlon@disabled.social)

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Tom Kindlon (tomkindlon@disabled.social)'s status on Tuesday, 13-May-2025 03:26:00 JST Tom Kindlon

I actually deteriorated over time, through following exercise, like many others with #MyalgicEncephalomyelitis. Improving or even stabilising is not the only possible outcome following an infection.
Plenty of research shows a significant percentage of those with #LongCovid satisfy #MECFS criteria
Unfortunately, through a lack of research, effective treatments don't exist for ME so people can be left languish for decades with debilitating symptoms, like I have been
#May12 #PwME @mecfs
In conversation about 4 days ago from disabled.social permalink
Attachments
1. I got a virus and never got better
  https://assets.disabled.social/media_attachments/files/114/488/994/494/868/380/original/f56b2116d05e3ec7.png
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Tom Kindlon (tomkindlon@disabled.social)'s status on Friday, 09-May-2025 10:44:56 JST Tom Kindlon

Mitigating fatigue in long COVID patients with MYPplus: a clinical observation
https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-025-10984-6
Screenshot is from the latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
In conversation about 8 days ago from disabled.social permalink
Attachments
1. BMC Infectious Diseases Mitigating fatigue in long COVID patients with MYPplus: a clinical observation — Choi et al. "This observational study aimed to evaluate the efficacy of MYPplus, an herbal formulation composed of Astragali Radix, Salviae Radix, and Aquilariae Lignum, in alleviating fatigue and brain fog in patients with Long COVID."
  https://assets.disabled.social/media_attachments/files/114/475/232/856/235/303/original/9b78cede6c54991a.png
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Tom Kindlon (tomkindlon@disabled.social)'s status on Friday, 11-Apr-2025 23:29:02 JST Tom Kindlon

Reading journal articles can feel daunting – this is a link to a guide written for science writers.
“How to Read a Scientific Paper”
https://www.theopennotebook.com/2018/11/06/how-to-read-a-scientific-paper/

In conversation about a month ago from disabled.social permalink
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Tom Kindlon (tomkindlon@disabled.social)'s status on Friday, 14-Mar-2025 08:44:14 JST Tom Kindlon

A Living Memorial to Joan Livingston – 1954 - 2025
Full article:
https://www.massmecfs.org/newsletters/918-spotlight-joan-livingston-mar-25
Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:
https://massmecfs.org/newsletters/919-2025-03-march-newsletter
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
In conversation about 2 months ago from disabled.social permalink
Attachments
1. Spotlight: Joan Livingston A Living Memorial to Joan Livingston – 1954 - 2025 This Memorial is not only a remembrance of Joan, but an inspiration for those of us who knew her well and for those who felt her spark in passing contact. A major part of Joan’s adult life was spent helping and advocating for ME/CFS patients, through the Massachusetts ME/CFS & FM Association. For those who are more recently part of the Association and the patient community and did not know her, it would be true to say that her spirit and past work still lives in the life and work of MassME. Without the incredible work of Joan and many other volunteers who built and nurtured the Association in its earlier years, the Association might not have been able to continue or to make a difference in people's lives as it does today. Click here to read Joan's memorial.
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2. Domain not in remote thumbnail source whitelist: www.massmecfs.org
  
  Spotlight: Joan Livingston - Mar 25
  
  from Ellen Rosenfeld
  
  Massachusetts CFIDS/ME & FM Association
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Tom Kindlon (tomkindlon@disabled.social)'s status on Thursday, 13-Mar-2025 13:03:11 JST Tom Kindlon

(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
1/
In conversation about 2 months ago from disabled.social permalink
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1. 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
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 10-Mar-2025 15:09:07 JST Tom Kindlon

27-minute video from @brokenbattery :
“the greatest medical scandal of the 21st-century”: ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
https://www.youtube.com/watch?v=RiwX9Y0NbiQ
Image is from AMMES March 2025 e-newsletter
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
In conversation about 2 months ago from disabled.social permalink
Attachments
1. “the greatest medical scandal of the 21st-century”: ME/CFS Scandal Explainer. A number of academics, experts, and journalists have characterised the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a scandal, with George Monbiot going as far as calling it “the greatest medical scandal of the 21st-century”. This video provides an introduction and overview, highlighting key events in the story.
  https://assets.disabled.social/media_attachments/files/114/134/898/622/491/875/original/5b306ddfff29967f.png
2. ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
  
  A number of academics, experts, and journalists have characterised the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a scandal,...
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 10-Mar-2025 14:55:48 JST Tom Kindlon

Solve ME announced the release of a new community developed resource guide for Infection-Associated Chronic Conditions (for example, Long Covid, ME/CFS, POTS, and other chronic conditions).
https://solvecfs.org/the-infection-associated-chronic-conditions-initiatives-iacci-community-resource-guide-is-now-available/
https://solvecfs.org/wp-content/uploads/2025/03/IACC-Resource-Guide.pdf
#MEcfs #LongCovid #pots @pots @mecfs @longcovid

In conversation about 2 months ago from disabled.social permalink
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Tom Kindlon (tomkindlon@disabled.social)'s status on Monday, 10-Mar-2025 07:05:43 JST Tom Kindlon

🧵
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
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
1/
In conversation about 2 months ago from disabled.social permalink
Attachments
1. 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.
  https://assets.disabled.social/media_attachments/files/114/003/577/523/881/817/original/31cd3b7cd6ffb4c5.png
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Tom Kindlon (tomkindlon@disabled.social)'s status on Saturday, 15-Feb-2025 22:16:54 JST Tom Kindlon

Press release for Australian research (funded by ME Research UK):
"Large hippocampus detected in Long COVID and ME/CFS patients"
https://news.griffith.edu.au/2025/02/11/large-hippocampus-detected-in-long-covid-and-me-cfs-patients/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @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 3 months ago from disabled.social permalink
Attachments
1. Griffith University logo with the following text News and analysis Large hippocampus detected in Long COVID and ME/CFS patients 11 February 2025 Striking brain similarities have been detected in patients who experience Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in particular, a larger than normal hippocampus. The Griffith University research, published today in PLOS ONE, used only one of two ultra-high field MRI machines available in Australia to uncover how Long COVID and ME/CFS similarly impact brain structure.
  https://assets.disabled.social/media_attachments/files/113/985/378/486/161/685/original/82497ac3948e22b8.png
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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 3 months 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 3 months ago from disabled.social permalink
Attachments
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>>
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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 3 months 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 4 months 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 4 months 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 4 months 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."
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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 4 months 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 4 months 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.
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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 4 months 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 4 months 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 4 months 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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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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