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#pwlc

22 posts10 participants3 posts today
Public
Tom Kindlon

Caffeine against persistent fatigue in #longCOVID: a randomized clinical trial

tandfonline.com/doi/abs/10.108

"participants met the Myalgic Encephalomyelitis: International Consensus Criteria"

"Caffeine alleviates fatigue & cognitive dysfunction in Long COVID"

What about side effects?

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

Public
Tom Kindlon

US research

Dysautonomia in long COVID is prevalent and could explain the frequency of symptoms

medrxiv.org/content/10.1101/20

#dysautonomia @dysautonomia #pots @pots @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2

medRxiv · Dysautonomia in long COVID is prevalent and could explain the frequency of symptomsBackground Long COVID presents with a variety of symptoms. Some of those symptoms could be related to autonomic dysfunction. Our aim is to evaluate the prevalence of autonomic dysfunction in long COVID patients. Methods We conducted a cross-sectional study and included all consecutive patients enrolled in several clinical research studies. We performed the following autonomic dysfunction markers: heart rate variability, heart rate, systolic and diastolic blood pressure changes during NASA lean test, cardiopulmonary exercise testing and a COMPASS-31 scale. We used linear regression to calculate the contribution of each dysautonomia measure on symptom burden as measured by the modified COVID-19 Yorkshire scale. Results We included 100 patients for this study. Our sample had a mean age of 56+/-11 years, included 53% minorities and 32% were women. Dysautonomia as defined by an abnormal COMPASS-31 was seen in 82%; 95% 72-89 while cardiovascular resting dysautonomia as represented by an abnormal heart rate variability was seen in 60%; 95% 48-70 of the population, orthostatic hypotension in 12% and POTS in 10%. In our adjusted analysis, we found that the beta coefficient for the COMPASS-31 score (0.37) was significant on changes in a self-reported long COVID symptom burden. The orthostatic intolerance and gastrointestinal domains of the COMPASS-31 was associated the highest long COVID symptom burden. Conclusion Dysautonomia is common in long COVID patients and contributes to the overall symptoms seen in long COVID. Identifying dysautonomia has important diagnostic and therapeutic implications. ### Competing Interest Statement The authors have declared no competing interest. ### Clinical Trial NA ### Funding Statement Yes ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: All studies were approved by the research ethics committees at the Miami VAHS and NOVA Southeastern University and all participants signed informed consent prior to participation. Miami VA is the IRB of record I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data cannot be shared publicly because it is owned but the Veterans Affairs.
Public
Tom Kindlon

New UK research:

Long-term effects of #SARSCoV2 infection on blood vessels and blood pressure

journals.lww.com/jhypertension

"Persistent vascular dysfunction and BP increase post-COVID-19 underscore the need for further studies on the long-term risk of hypertension & cardiovascular disease”

@longcovid
#LongCovid #PwLC #LC #PASC #postcovid
@covid19 #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver

Graphical abstract
Public
Tom Kindlon

Please support Dr David Tuller's important work: he has the necessary skills, knowledge & networks to be able to challenge those who promote dubious psychobabble theories & that conditions can be overcome with enough effort/discipline

crowdfund.berkeley.edu/project

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

@david

Logo for virology blog $305 0% Raised toward our $68,000 Goal 6 Donors 29 days left Project ends on May 05, at 11:59 PM PDT Project Owners Project Owner Image Give Now Trial By Error: Reporting on ME, ME/CFS, Long Covid, & so on...
Continued thread
Public *
Anna

In case it was missed in the post above, this is my updated article:

👉 thecanary.co/global/world-anal

My doctor predicts I will die if I don’t leave soon.

I need a solid, safe, home I can go to and recover to at least a stable baseline. It’s not full recovery, but it’s better than a slow death.

Help please 🙏

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath #MCAS #MCAD #Endometriosis #ChronicPain #CostOfLivingCrisis #Melbourne #Australia #DomesticAbuse #DV

@chronicillness @longcovid @neisvoid
@disabilityjustice
@disability @socialwork
@dysautonomia @mutualaid
@mecfs
@chronicpain
@mcas
@australia
@melbourne

Canary · Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuseNearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse from Canary on 1 April 2025
Public
ahimsa

News from #MEAction - planning for #MillionsMissing 2025 (May 12)

"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"

Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
us06web.zoom.us/meeting/regist

Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
us06web.zoom.us/meeting/regist

Details:
meaction.net/2025/04/02/millio

@mecfs

Join Us for Millions Missing 2025 - (USA) Join the protest at the Capitol in Washington, D.C. - Host your own #MillionsMissing protest or gathering - Show up on social media on May 12th - Get creative—create SOS art with messages directed at your government/elected officials - Check out UK’s #MillionsMissing campaign—coming soon!
#MEcfs#PwME#LongCovid
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 *
Anna

PLEASE HELP ME ESCAPE!

Please #boost and share to other platforms.🙏I don’t have energy left (see below).

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.

👉Last year:
thecanary.co/global/world-anal

Now things are worse, I’m much sicker, being neglected and will die without a safe stable #home. Doctor’s words.

If not mentioned in the article, my father is a diagnosed #narcissist with #psychopathic & #antisocial tendencies by a #psychiatrist. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other family members who lured me back through the promise of help.They didn’t help they made me progressively worse to the point of almost incapacitation at stage of #illness.

👉A year later:
thecanary.co/global/world-anal

I’ve tried every level of government, every service and they simply won’t help.

Are able help? Please ask people in real life if they have somewhere for me to go. Could they take me in (I can pay small rent)? A lot people have ‘big house, not enough money’ problem. I can help!

Is anybody an #advocate? I desperately need help.

I would be incredibly grateful for any help beyond words.🙏

Please read articles for full information.

Thank you for reading.

#PwME #LongCovid #MECFS #Hypothyroidism #ChronicIllness #Neisvoid #Abuse #Housing #Dysautonomia #SocialWork #MedMastodon #PWLC #MutualAid
#HumanRights #Press #Housing #Journalism #MECFS #SevereME #Abuse #Neglect #MutualAid #Narcissist #Psychopath

Woman bed in a very dark room with ear defenders and light block glasses.
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.”
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