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#pwLC

12 posts8 participants2 posts today
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 *
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

🧵
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

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...
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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