#PwLC is an active hashtag on Bluesky. In the last 30 days, 12 people shared 37 posts with it — around 1 a day. Activity is down 53% versus the previous week, peaking on Jul 26 with 4 posts.

Posts with #PwLC

Phoenix 🏳️‍⚧️ - free hugs 💜

@anyaphenix.bsky.social

over 1 year ago

I think most abled people don't understand that being disabled is often a constant dance between rest and activity, trying to make sure you don't harm yourself further. I know I didn't. #LongCovid #pwLC #ChronicIllness #neisVoid #mecfs

6 32 234

Tom Kindlon

@tomkindlon.bsky.social

4 days ago

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Particularly relevant when similarities with the #LongCovid presentation in some people are being missed #MEcfs #CFS #PwLC 1/

APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.

1 11 33

ThereForME

@thereforme.bsky.social

over 1 year ago

David Putrino is #ThereForME! @putrinolab.bsky.social is a leading #LongCovid clinician and Director of the @mountsinainyc.bsky.social Center for Recovery From Complex Chronic Illnesses. His message: “Happy Holidays! We won’t stop fighting for pwME! Love David” #PatientSafety #pwME #pwLC

A pretend polaroid shows David Putrino posing for a photo holding a #ThereForME Christmas card.

The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "7". The design is in the #ThereForME colours.

This second image displays David’s handwritten message. It reads: “Happy Holidays! We won’t stop fighting for pwME! Love David”

10 35 149

Brent Forman 🇨🇦

@joeblow604.bsky.social

over 1 year ago

I'm new & not sure how to start off here so sharing some of my #mecfs #artwork. This ones called Walk with ME. Its a digital reproduction of my original 8x10 #oilpainting representing the nothingness/isolation #pwME & now #pwLC face in the medical system, governments, support & society #art #BMS

15 13 117

Tom Kindlon

@tomkindlon.bsky.social

over 1 year ago

A big thank you to everyone who did anything, big or small, for the #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (+/or #LongCovid) cause in 2024 (including simply sharing messages on social media). 👍👏 Together we can make a difference. #MEcfs #PwME #PwLC

Image showing "thank you" in lots of different languages

3 24 109

ThereForME

@thereforme.bsky.social

over 1 year ago

@lbc.co.uk presenter @natashadevon.bsky.social is #ThereForME! Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon” #pwME #pwLC

A pretend polaroid shows Natasha Devon posing for a photo holding a #ThereForME Christmas card. The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "X". The design is in the #ThereForME colours.

This second image displays Natasha Devon’s handwritten message. It reads “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon”

6 35 100

Brent Forman 🇨🇦

@joeblow604.bsky.social

over 1 year ago

People with #MEcfs have a very low quality of life. It leaves your health and life in pieces on every level. It breaks you. So this piece I call ‘Fragmented’. Quality of Life Study- tinyurl.com/ybnfwvg3 #pwME #pwLC #MyalgicEncephalomyelitis #longcovid #MEawareness #art #BMS #BrentMichaelStudios

3 20 90

ThereForME

@thereforme.bsky.social

over 1 year ago

It’s @joplatt.bsky.social, MP for Leigh & Atherton! Jo is a @teamlabouruk.bsky.social champion in parliament for #pwME & #pwLC + new chair of the APPG on ME. Her message: “My Christmas wish is for people with ME and Long COVID to be recognised and supported through healthcare and the workplace.”

A pretend polaroid shows Jo Platt MP posing for a photo holding a #ThereForME Christmas card.

The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "2". The design is in the #ThereForME colours.

This second image displays Jo Platt’s handwritten message. It reads: “My Christmas wish is for people with ME and Long COVID to be recognised and supported through healthcare and the workplace. Jo Platt MP”

4 27 85

Tom Kindlon

@tomkindlon.bsky.social

over 1 year ago

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome Particularly relevant when similarities with the #LongCovid presentation in some people are being missed #MEcfs #CFS #PwLC

10 29 83

Vlad Vexler

@vladvexler.bsky.social

over 1 year ago

Urgently seeking help from #pwME #pwLC : Who tests for & treats microclots in UK (outside of research studies)? It’s been suggested I have microclots in my lungs and that this could have contributed / caused my life-threatening saturation event. Any thoughts on this?

9 22 81

Tom Kindlon

@tomkindlon.bsky.social

about 7 hours ago

From France & Italy Longitudinal immune profiling of Long COVID phenotypes reveals a shared persistent IL-17F-centered immune signature www.researchsquare.com/ar…. Screenshot from latest Science for ME weekly update #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC

Longitudinal immune profiling of Long COVID phenotypes reveals a shared persistent IL-17F-centered immune signature — Kumar-Singh et al
"Importantly, the persistence of these highly coordinated immune alterations occurred in parallel with the normalization of conventional acute-phase inflammatory markers." "This divergence indicates a fundamental pathophysiological transition: chronic symptom persistence in fatigue-like LC is likely driven by a self-sustaining, maladaptive tissue-repair program rather than an unresolved acute inflammatory state."
Preprint | Thread

1 2 7

Long Covid SOS

@longcovidsos.bsky.social

over 1 year ago

📢 What can you do? Tag a friend, share, and check out our GP & patient leaflets—developed with the Royal College of GP’s and backed by the Clinical Post Covid Society —to help #pwLC get the care they need. longcovidsos.org/gp-leaflet

longcovidsos.org

GP LEAFLET | Long Covid SOS

In close partnership with the Clinical Post Covid Society we have completely revised and updated the leaflet for GPs that we co-produced with the Royal College of General Practitioners. This leaflet...

4 35 74

Tom Kindlon

@tomkindlon.bsky.social

about 7 hours ago

1 2 7

Martin Grimshaw Has Long Covid

@thrivingplanet.bsky.social

3 days ago

#pwLC used to be a thing on Twitter, and I do refer to 'people with Long Covid'. But my main issue with being labelled a patient, is that healthcare doesn't really exist for most people with LC, so I'm not really a patient at all. The NHS in Britain doesn't really give AF about us tbh.

1 0 4

Martin Grimshaw Has Long Covid

@thrivingplanet.bsky.social

3 days ago

1 0 1

Tom Kindlon

@tomkindlon.bsky.social

4 days ago

1 11 33

Science for ME (S4ME)

@s4me.info

5 days ago

Our latest News in Brief summary (in two parts this week) has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of July 27 - Aug 2. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC

s4me.info

News in Brief - July 2026

This thread has a Science for ME 'News in Brief' post for each week in July 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

0 5 3

Princess in the Tower

@apainprincess.bsky.social

6 days ago

“Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100%. But when you wake, it’s only at 9% and you have to try and function on that 9 percent. You’re never fully charged.” buff.ly/3QurKxP #autoimmune #pwME #pwLC #chronicpain

0 0 9

Steve Fifield

@stevefifield.bsky.social

6 days ago

#pwME #pwLC Don’t just be “There for ME” for the times when we can meet. Please, mostly be “There for ME” for the times when we can’t 💙♥️🫂🙏

0 0 0

Tom Kindlon

@tomkindlon.bsky.social

6 days ago

Estimating the Quality-Adjusted Life-Year Loss due to Fatal and Nonfatal COVID-19 Outcomes across US States and Counties, July 2020 to December 2022 journals.sagepub.com/doi/…. Screenshot from latest Science for ME weekly update #LongCovid #PASC #PwLC #postcovid #postcovid19

1 4 8

Tom Kindlon

@tomkindlon.bsky.social

7 days ago

From Australia Altered TRPM3-Dependent Cytosolic and Mitochondrial Calcium Influx in Natural Killer Cells of Post-COVID-19 Condition Patients onlinelibrary.wiley.com/d…. Screenshot from Science for ME weekly update #LongCovid #postcovid #PASC #PwLC #postcovid19 #PostCovidSyndrome

Altered TRPM3-Dependent Cytosolic and Mitochondrial Calcium Influx in Natural Killer Cells of Post-COVID-19 Condition Patients — Magawa et al
"this study provided new evidence that demonstrate that TRPM3 ion channel dysfunction has a significant impact on cytoplasmic and Ca2+ mobilization in the mitochondria in PCC." "In addition, this study highlighted potential overcompensatory mechanisms in the mitochondria, possibly arising from altered Ca2+ signalling processes."
Article | Thread

1 4 9

Tom Kindlon

@tomkindlon.bsky.social

7 days ago

An exploratory exome-wide machine learning analysis identifies candidate host gene signatures associated with Long COVID in a large admixed Brazilian cohort www.frontiersin.org/journ…. Screenshot from Science for ME update #LongCovid #postcovid #PASC #PwLC #postcovid19 #Covidlonghaulers

0 4 11

Belasco

@belasco.bsky.social

8 days ago

I actually tried to do some of the things I normally have to guess about on the monthly FUNCAP27 check in on the #VisibleApp this month, & though I tried to be optimistic I still dropped .4 - there’s probably a lesson in that somewhere. #pwME #pwLC

1 0 5

Tom Kindlon

@tomkindlon.bsky.social

8 days ago

( #Perth, #WesternAustralia ) Research team seeks patients with long Covid Screenshot from latest Emerge Australia email bulletin #LongCovid #postcovid #PASC #PwLC #postcovid19 #PostCovidSyndrome

Edith Cowan University (ECU), Joondalup (WA) are recruiting for their study to understand how muscles work in people with long COVID.

You might be suitable if you are:

Aged 18-65 years old
Can perform muscle contractions of your ankle and forearm while seated
Do not have other serious health issues
For more information about the study contact Dr Chris Latella via email at c.latella@ecu.edu.au or Kym Wansbrough at

kym.wansbrough@ecu.edu.au.

Ethics approval number: 2024-05530-LATELLA

0 3 7

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