#pwlc 搜尋結果
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
🎁🕊️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
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
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
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
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.”
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
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
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
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
Accounts seemingly which appear out of nowhere barely a year old and speaking with authoritative we and our about long Covid patients aren’t sus at all. Especially when these accts are dismissive of the history of #pwlc Check out the dates of the accts you are engaging with.
#3 is “Ozone” in our series “A Long COVID patient tries …” In this series we break down therapies a COVID Long Hauler has tried. The rationale & how it helped them, or didn’t, will be discussed & more. #LongCOVID #pwLC #LC #Ozone #ALCPT 🧵🧵🧵
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
Hello friends #pwME #pwLC, I'm trying to find a sustainable way to have my hair washed. Does anyone have a nifty hack to lie back & have their hair washed over the bath? I'm thinking a cushioned bench with some sort of back support 👇. I need to be able to just lie there 😅#MECFS
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
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
Join me for trivia. #pwlc
I am game to work to try for trivia again. Gives me something positive to work towards. Set a reminder for my upcoming Space!
#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
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
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).
My thoughts today are with the #LongCovidMoonshot heroes who attended the HELP hearing, and are now suffering from the resulting PEM 💙 @LCMoonshot @MamaSitaa__ @SawyerBlatz @coco_chatel @loscharlos @mild #LongCovid #pwLC #MECFS #pwME
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!
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
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€.
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.
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
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.
Oppose the holidays for good reason... but redirect concern to ur marginalized neighbors! Mem is Black, trans #pwLC, has a broken furnace. & it's snowing tonight. They're so cold its terrifying, fundraising $1030 Sunday rent and their move, right before lease ends! DON8 AS ABLE!
This is our first in a series called: “A Long COVID patient tries …” Where we break down things a COVID Long Hauler has tried. The rationale & how it helped them, or didn’t, will be discussed & more. #1 “Monoclonal Antibodies” #LongCOVID #pwLC #LC #mAbs #ALCPT 🧵🧵🧵
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.”
#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.
#pwLC #pwME #NEISVoid Who’s ready for RECOVER-TLC 2.0? I came down yesterday and am awake (barely). Presentations today and tomorrow. Register here for FREE VIRTUAL attendance: fnih.org/our-programs/r…
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
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
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