#pwlc search results
🎁🕊️The Gift of Peace & Warmth🕊️🎁 Welcome to AidBot's Dec 📌🧵! 🎄This space is open to ALL who need support this season - #pwLC, neighbors, anyone catching up or in need of care. 🕊️Share your: 📌Pinned needs 🎁Wishlist links 🕯Words of hope #LongCovidAid #MutualAidThread
Let’s dive into: “COVID-19 is ‘Airborne AIDS’: provocative oversimplification, emerging science, or something in between?” ajpmfocus.org/article/S2773-… #LongCOVID #pwLC #LC #Immunodeficiency 🧵🧵🧵
Wow I’m so beyond upset, I just got a book given to me by someone who is supposed to care for me. Now I’m gonna be sending them articles bcuz I have kept to myself for yrs, they opened pandora’s box. So send links I need some help. DM I’m heartbroken #longcovid #pwLC
Here is the one pager we handed out during the Long COVID Roundtable discussion with HHS and company. Of course more is needed, but these are 7 important needs for the Long COVID community. The time is now for testing, trials, & treatments. #LongCOVID #pwLC #HHS #Roundtable
It’s @JoPlattLeigh, MP for Leigh & Atherton! Jo is a @UKLabour 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.”
Hey #pwLC and #pwme , just came across the latest Health Rising Interview with Dr Nancy Klimas. She mentioned a 3 layer approach to come back to homeostasis
Dec 22: it’s Rachel Parris! @rachelparriscom is an English comedian, musician, actress and presenter! Her message: “I wish peace, relief, support and to be heard. I hope Santa brings you real help, systemic change and JOY where possible.” #PatientSafety #pwME #pwLC #ThereForME
Dec 3: @LBC presenter @_NatashaDevon 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
Some people have been wondering how difficult it is to wear a mask (Kn95 or better is best) to protect themselves & others against SARS-CoV-2 infection when in a public space. Here is a video that answers this complex question. #LongCOVID #pwLC #MaskUp #CleanTheAir
The ultimate uno reverse would be for those with #LongCOVID to start being the main advocates for ME/CFS (with the understanding it’s a symptomatic syndrome with different underlying ongoing causes). Non-LC orgs & people do it to us with LC, so why not … #pwLC #UnoReverse
Just a reminder: Chronic illness will never be solved in any significant way if chronic & reactivated pathogens don’t have good mainstream testing & treatments. … Right now many don’t, such as: SARS-CoV-2, Borrelia, EBV, & on & on & on. #TreatChronicPathogens #LongCOVID #pwLC
Thanks to @BFWoodburn for creating this graphic for @LCMEBillboards !! This has all details of the 4 leaflet distribution groups for #LongCovidAwareness. If this could be shared around socials etc, much easier!! #pwME #pwLC #LongCovid
Question for fellow #pwME #pwLC who track smartwatch data: does anyone else have messed up respiration while sleeping? Mine's a steady c. 13 brpm while awake, spikes to 18-24 while sleeping, except when I'm in PEM and it'll have large dips down to 6 or so. Any theories?
🧵🧄 THREAD: GARLIC: Interferon x H₂S/NO x micro-clots Synergy: a cure for acute Covid & #LongCovid 🚨 My personal case study: ≥ 20 marinated cloves day shut down acute COVID in 7 days & strongly diminished Long COVID after other things failed. #TeamClots #pwLC #pwME #MECFS
CONGRATULATIONS to NCNED Researcher Breanna Weigel who submitted her PhD Thesis last Wednesday! Her Thesis investigated the health related quality of life of #pwME and #pwLC to gain further insights and to improve healthcare policies in Australia. #GriffithUniversity #GriffithUni
We hope you're enjoying the #ThereForME Advent calendar! It's the mid-Advent weekend and we have 2 questions for you: 1. Who else would you like to see on the Advent calendar? 2. Which message has meant the most to you so far? #pwME #pwLC #PatientSafety
🔥 Please share - Very important care campaign for anyone with ME #pwME #pwLC ♥️💙🫂 "Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness" justice4me.uk
School is starting for many soon. With that comes the spread of SARS-CoV-2. It’s harmful to adults, but it’s also a major concern for kids. Millions of children in the U.S. are suffering with #LongCOVID, some too unwell to attend school. 🧵 #pwLC #LC #CleanTheAir
So many amazing people have been working hard to make this event impactful and safe. If you're in SoCal for #LongCovidAwarenessDay, come make your voice heard! bit.ly/LCLieDown #pwLC #CureLongCovidNOW #LongCovidMakesUsOne #LongCOVIDSupport #LongCovidMassFollow
#pwLC #pwME #NEISVoid Nomination time! Submit names for the NASEM Standing Committee on Emerging Infectious Diseases by Jan 9th. Details here: survey.alchemer.com/s3/8098105/Sta…
So no fevers in #pwME/#pwLC isn’t only linked to low norepinephrine in the brain stem (x.com/a_n_natomy/sta…) but also to EDS and MCAS? How come no one has connected the dots yet?
Holy sh*t! Everything relates back to EDS. Just saw a video saying people with MCAS have a low fever response! I rarely get fevers. And when I was younger my baseline temperature was 98.6 now (ever since getting “the big sick”) it’s more like 97.6 so even 99 degrees (F) is warm…
The ultimate uno reverse would be for those with #LongCOVID to start being the main advocates for ME/CFS (with the understanding it’s a symptomatic syndrome with different underlying ongoing causes). Non-LC orgs & people do it to us with LC, so why not … #pwLC #UnoReverse
C0VID alone can do this. The virus has a reservoir in the bone marrow, where it disturbs the formation of the cells. This is why I remind people that Long C0VID is not all Long C0VID vaxx. This is a consequence of C0VID. #pwLC #LongCovidIsReal x.com/polybioRF/stat…
“At least 2/3 of individuals with Long COVID contained [SARS-CoV-2] infected megakaryocytes,” says Dr. Morgane Bomsel. “This suggests that megakaryocytes form reservoirs in LC patients—which may produce platelets sheltering infectious SCV2.”
“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%. You’re never fully charged.” buff.ly/3rRDYWM #chronicillness #severeME #pwLC
#pwLC take note!!! Please share especially with BIPOC participants who may be interested. This is very exciting to see such quick recruitment!
We're now over 900 LoCITT-T participants & close to a last call for new participants! We're still hoping to enroll folks from ND, MS, & PR & more BIPOC participants. More info, lots of FAQs & screening survey here: longcovid.scripps.edu/locitt-t
🪡 P.S. #pwLC & friends: Follow boost share and support #MutualAidBoost #MutualAidRequest #HelpFolksLive2025 #AltUBI and #AltUBIGoal to weave stronger nets of care this season. 🕊️🎁🕯️🎄🕊️🎁🕯️
🎁🕊️The Gift of Peace & Warmth🕊️🎁 Welcome to AidBot's Dec 📌🧵! 🎄This space is open to ALL who need support this season - #pwLC, neighbors, anyone catching up or in need of care. 🕊️Share your: 📌Pinned needs 🎁Wishlist links 🕯Words of hope #LongCovidAid #MutualAidThread
If you really look around, you’ll see the vast amount of unnatural illness & death too. It may not look exactly like your Long COVID, but it’s there. #LongCOVID #pwLC #LC #AntiviralsNow #TimeIsTicking #LongCOVIDIsEverywhere
I’m NOT fan of Amazon but don’t have choice as a bedridden #PwME #PwLC If you wish to gift me a different ecard usable online in Australia, it’s welcome! I’m already registered with prezzee.com.au which has a universal no fee card if that’s helpful. 🤷♀️ #MutualAid
Comfort/Discomfort Agreement for my #pwLC Peer Support spaces. Please practice sensory sensitivity.🙏 My DMs are open for clarification or questions. 🙏❤️🩹✊🏼
$745’s needed. #ShopSmall and support a nonbinary, disabled #PWLC #artist of Indigenous descent. #NAHM #Art mayasdivinedesignstoo.square.site #DigitalArt: Ko-Fi mayasdivinedesigns (also P/C/V) Tips linktr.ee/mxmd1 #Music truthbytwo.bandcamp.com
COVID #COVID #LongCOVID #pwLC
“We are definitely seeing more young people coming in with strokes, but they often come delayed to the hospital because the last thing on their mind is that they’re having a stroke.” #RSNA25 time.com/7336678/donald…
There’s no logical way to look at SARS-CoV-2 & Long COVID & truly believe it’s not uniquely harmful. Anyone saying it’s the same ole, same ole is not your friend. #LongCOVID #pwLC #LC #AntiviralsNow
since June w/ 3 currently being treated. This infection is deadly for people w/ weakened immunity. Literally EVERYONE who has had #Covid falls into that category. I don’t want to be an alarmist but as a #pwLC who lives w/ serious health issues now, this news sucks! #CDC #RFKjr
Looks like COVID is exploding right now again … stay safe. This ain’t the Flu! #LongCOVID #pwLC #LC #COVID
I know this topic is like walking on eggshells... But #pwLC #pwME please if you aren't parents yet, think carefully before bringing a kid into this world. I understand it's a dream for many, but is the suffering worth it?
Brazilian singer, Eva Rodrigues Praia Walkey, passed away after battling LongCOVID for 5 years while her husband played guitar and sang to her and their young son. She gave birth, was repeatedly hospitalized over the 5 years, and just couldn’t recover. express.co.uk/celebrity-news…
Die Befragung ist nicht für #pwME. Ausschließlich fpr #LongCovid bzw. #pwLC. #MECFS wird nicht ein einziges Mal erwähnt.
Just got my #microclot results back - headed to #TT soon… 4 out of 4. Scared. If you have done triple anticoagulant therapy / please give me feedback. #pwLc #pwME #NEISvoid (feel free to RT).
Another new doctor appointment. Another disappointing experience. Where are all the proactive and knowledgeable professionals? #COVID19 #LongCOVID #pwLC #YallMasking #MaskUp
Today's last day to restore $800 heat... offices reopen Mon. We're 2 Black #pwLC just endured high-heat summer & now a winter sick & fatigued, no heat, basic clothes, or housing secured for when lease ends in Jan. PLS, show care-- even $2! We need $4.8k in 8 days, inclds rent!
Twitter (or "X" I guess) has become so toxic. MDs mocking disabled people for not wanting to get COVID and recommending "exposure therapy" is sad to see. It's no surprise that #pwLC, #pwME and other chronic complex illnesses experience serious medical trauma.
There are multiple studies showing few #pwLC recover even after 2 years. Multiple papers are also showing SARS-CoV-2 persistence almost 2 years after infection. Entire conferences are dedicated to the pathology of #ViralPersistence...but fine ignore me.
Wow I’m so beyond upset, I just got a book given to me by someone who is supposed to care for me. Now I’m gonna be sending them articles bcuz I have kept to myself for yrs, they opened pandora’s box. So send links I need some help. DM I’m heartbroken #longcovid #pwLC
It’s @JoPlattLeigh, MP for Leigh & Atherton! Jo is a @UKLabour 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.”
Liebe #pwLC, #pwME, Mein Tipp des Tages, lasst bitte mal Eure Immunglobuline bestimmen, falls Ihr es noch nicht gemacht habt. Konkret IgM, IgA, IgG, und insbesondere IgG Subklassen! Das Beispiel hier ist von Biovis, das bieten aber viele Labore an. Kostet unter 100€.
#pwME and #pwLC A community note has been proposed on one of Garner's latest posts. If you have CN, rate it. If not, sign up so we can make sure this kind of disinformation is flagged.
Hey #pwLC and #pwme , just came across the latest Health Rising Interview with Dr Nancy Klimas. She mentioned a 3 layer approach to come back to homeostasis
🧵🧄 THREAD: GARLIC: Interferon x H₂S/NO x micro-clots Synergy: a cure for acute Covid & #LongCovid 🚨 My personal case study: ≥ 20 marinated cloves day shut down acute COVID in 7 days & strongly diminished Long COVID after other things failed. #TeamClots #pwLC #pwME #MECFS
After 1 week, we now have 71 responses, 27 #pwlc and 44 #pwme thank you. The survey is open for another 3 weeks it would be great to double those numbers. Please fill out even if you have only been trialling for a short time, all experiences important. Thank you @PhysiosForME
Dec 3: @LBC presenter @_NatashaDevon 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
Post Exertional Malaise NOT just exaggeration of "Boom and Bust", energy averaged out over time out. My PEM in blue below shows I am wrecked for a MUCH LONGER period than the exertion over my baseline. Why do even the most recent official documents get this wrong? #pwME #pwLC
Hey guys Can you drop some feedback and tell us what you think of these two designs for the hospital billboard? I will probably run a poll for people to vote on them but right now just looking for general feedback on these drafts. What do you think? #LongCovid #MECFS #pwlc
This chart shows the % of ME/CFS-related papers mentioning Post-Exertional Malaise (PEM) 🛏 It really took until 2008-12 for this term to be established in the literature. It's now at ~9% of papers, and growing 📈 More please!!! #mecfs #pwme #pwlc #longcovid
Reposting my reply for anyone Professor Garner has blocked. #MECFS #pwME #pwLC #LongCovid #chronicillness #MyalgicEncephalomyelitis
Honestly it’s looking like a lot of #pwLC have a bone marrow reservoir… wouldn’t be at all surprised if I do #longcovid #SARSCoV2
No, #LongCovid (PASC) is real! Now, a new, cellular level study has also proved that! The study finds that altered mitochondrial respiration in peripheral blood mononuclear cells of LongCovid patients may be contributing to the etiology of PASC. 1/
Thanks to @BFWoodburn for creating this graphic for @LCMEBillboards !! This has all details of the 4 leaflet distribution groups for #LongCovidAwareness. If this could be shared around socials etc, much easier!! #pwME #pwLC #LongCovid
#pwME #pwLC #NEISVoid WE NEED YOUR HELP! It’s far past time more media shone a light on what @GeorgeMonbiot called "the #GreatestMedicalScandal of the 21st century." We want to show TV producers that #MyalgicEncephalomyelitis #ME #MECFS deserves a primetime spot. (1/5)
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