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#pwLC

20 posts11 participants8 posts today
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.
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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.”
Public
Tom Kindlon

Brain Structural Abnormalities in Patients with #PostCOVID -19 Headache

mdpi.com/2035-8377/17/4/50

Retrospective 30 vs 30 MRI case/control study. "One of our most noteworthy findings is that white matter lesions were identified in 50% of the post- #COVID-19 group, compared to 20% in the control group”

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #CovidBrain @covid19 #COVID19 #COVID #COVID_19 #SARSCoV2 #CovidIsNotOver #auscovid19 @auscovid19

Public
datum (n=1)

Hey! Are you in the USA, near-ish to Virginia? Do you (or someone you know) have any of:

  • hypersomnia
  • complex sleep disturbances
  • postural orthostatic tachycardia syndrome, or POTS?

Trials are open for treatments for these symptoms!

Those interested in participating in the trials can contact the clinic for screening to see if they are eligible. The team can be reached via email at covidtrialsuva@uvahealth.org, or by phone at 434-243-4008 or toll-free at 855-882-5334.

and they seem like good folks:

“We see patients coming in who are frustrated because they look fairly normal, but they cannot fully function and are not being believed,” she said. “So, for those people, I want to say this is truly a disease and you are not imagining anything.”

#COVID19#COVID#LongCOVID
Public
Tom Kindlon

Trial by Error by David Tuller

BMJ's Strange Response to Our Letter of Concern Regarding "Living Systematic review" of Long Covid Interventions

virology.ws/2025/03/28/trial-b

About ongoing aftermaths after Tuller with 18 colleagues sent a letter to BMJ requesting a correction to a problematic review of LC treatments.

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain

virology.ws · Trial By Error: BMJ's Strange Response to Our Letter of Concern Regarding "Living Systematic Review" of Long Covid Interventions | Virology BlogBy David Tuller, DrPH In December, I sent a letter, co-signed by 18 colleagues, to The BMJ's editor in chief, Dr Kamran Abbasi. The letter requested a ...
Public
Tom Kindlon

“Canadian Guidelines for Post COVID-19 Condition: This set of guidelines has been updated with new recommendations.”
canpcc.ca/guidelines/

Summary by an advocate: s4me.info/threads/canadian-gui

@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
#CovidBrain

Canadian Guidelines for Post-COVID-19 Condition (CAN-PCC)Guidelines - Canadian Guidelines for Post-COVID-19 Condition (CAN-PCC)CAN-PCC Guidelines and Good Practice Statements Post COVID-19 condition is a complex health condition that presents with a spectrum of symptoms and impact on daily life.This is why health professionals, people with lived experience, and other experts are working together to create the Canadian Guidelines for post COVID-19 condition (CAN-PCC). The CAN-PCC guidelines use the [...]Read More...
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Craig Groeschel

I wonder whether anyone is making a physical scrapbook of toots/tweets, articles, papers, memes, etc. and what materials are you using? DMs are open.

If I may preemptively head off any replyfolks who are dying to say, "You don't want to do that." I'm not looking for anything else here other than an answer to my question.

#pwLC#scrapbook
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