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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
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
Dec 20: It's TV doctor Dr Ranj Singh! @DrRanj is also an author and columnist, and has appeared on @bbcstrictly. His message: “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x” #PatientSafety #pwME #pwLC #ThereForME
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
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
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
🧵🧄 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
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
$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
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.”
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?
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
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
For anyone feeling particularly ill or overwhelmed or lost, I hope this most perfect little hoglet offers a moment of lightness. 💙🫂 He approaches Honeysuckle & the water bowl, then explores each nest box. Curled up, he’s the size of a tennis ball. #pwME #pwLC #ChronicIllness
#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 🧵🧵🧵
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
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
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
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…
Yearly physical went ok. PCP really does try to listen. Both giggled at my 100/66 BP saying I must be stressed. She ordered a Sjogrens panel due to some sx but said not much in the way of tx. Story of my life. Suggested the Shingles vax again too. Any #pwLC feedback on that one?
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.
To #PwLC living in the states:
Hey all — this is a huge, huge deal. It typically takes 1-2 years to enroll 1k trial participants. If we can get this trial full within a month of launch, it could drastically change the landscape of #LongCovid trials moving forward — & timeline to proven treatments. Pls share!
Those who participated in the @ChronicleBioAI MELO Long COVID Genetics Study are seeing results roll in. If you have the MyDataHelps App, click on studies & view your Long COVID results for those that have them available. Interesting stuff! #LongCOVID #pwLC #Genetics
ME/CFS & Long COVID patients: we need your help! We’re validating a new tool to measure post-exertional malaise (PEM). Current questionnaires don’t capture its severity or impact. Your input changes that! English: soscisurvey.de/V-PEM-AQ_engli… German: soscisurvey.de/V-PEM-Q/ 🫶🙏
This title makes no sense. Post-infectious as a term is absurd. They just want it to sound like it’s post-infection & lump everything together, but it’s not post infection. The nothing new is ignoring chronic pathogens …. Long COVID is most definitely new. #LongCOVID #pwLC
Heute war die Auftaktveranstaltung der „Allianz postinfektiöse Erkrankungen: Long COVID und ME/CFS". Die Allianz wird in Zusammenarbeit mit Bundesforschungsministerin @dorobaer (@bmftr_bund), Forscherinnen und Forschern sowie Betroffenen umgesetzt.
It’s crazy how some doctors will let us die on a hill because they don’t want to believe SARS-CoV-2 & other pathogens are chronic & a major problem. 🦠 Guess there is not a lot of money in writing a script for Paxlovid or mAbs. 💰 #LongCOVID #pwLC #LC #AntiviralsNow
$765 is needed, sales and tips are urgently needed, there’s lots of great holiday gifts available, support a small business! #PWLC #ShopSmall Art mayasdivinedesignstoo.square.site DigitalArt: Ko-Fi mayasdivinedesigns (also P/C/V) Tips linktr.ee/mxmd1 Music truthbytwo.bandcamp.com
Not sure about y’all … but seems like pretty much everyone around me is sick with some odd , often pretty serious, thing in the last few years. Denial doesn’t make COVID go away. #LongCOVID #pwLC #LC #CleanAir #MaskUp #AntiviralsNow
#NAHM #PWLC $765’s needed for food, basics and a mobility ramp. #Art mayasdivinedesignstoo.square.site #WearableArt legaleriste.com/mayas.divine.d… #DigitalArt: Ko-Fi mayasdivinedesigns (also P/C/V) Tips linktr.ee/mxmd1 #Music truthbytwo.bandcamp.com
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.
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.
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
One of many receipts showing The $5 Stalker donating to ppl that he's been stalking & harassing for years in attempt to get their address. He's a documented doxer. Karma? He accidentally gave them his address (blacked out, bc unlike Burke, I don't dox) #pwLC beware of #exmopedo
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
#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.
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€.
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.”
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
🧵🧄 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
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
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
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
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
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
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
Reposting my reply for anyone Professor Garner has blocked. #MECFS #pwME #pwLC #LongCovid #chronicillness #MyalgicEncephalomyelitis
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