Long Covid Lad @longcovidlad.bsky.social · 24/02/2024chng.it/nYCzQ5z2wkchng.itUrgent Action Needed to Save Millie: Help Us Demand Proper Treatment for Severe MEI have set up this petition on behalf of Millie, who is 18 years old and has very Severe Myalgic Encephalomyelitis (ME/CFS). She is currently in The Royal Lancaster Infirmary part of the University H... 011
Reposted by Long Covid LadWhitney Dafoe @whitneydafoe.bsky.social · 22/02/2024NIH’s new “study” describing ME/CFS patients as having "Altered Effort Preference" is such bullshit. Would you resist if you were pushed next to a cliff with a long drop? Is that "Effort Preference"? Or are you reacting to something that would hurt you? It’s that simple. #NIH #MECFS 1196
Reposted by Long Covid LadDr. Lucky Tran @luckytran.com · 19/12/2023In one year, New York City's messaging went from "you do you" to "mask up with an N95." This didn't happen by chance. Advocates & groups like @covidadvocacyny.bsky.social organized to take down the MTA signs & attended every NYC council hearing on COVID to push for better messaging. Advocacy works! 11576212
Reposted by Long Covid LadTom Kindlon @tomkindlon.bsky.social · 19/12/2023“Compared to two independent historical control cohorts, patients with post‑COVID exertion intolerance had fewer capillaries, thicker capillary basement membranes and increased numbers of CD169 + macrophages.” #LongCovid #PwLC #postcovid #PostCovidSyndrome #LC #PASC 133
Reposted by Long Covid LadTrish Greenhalgh @trishgreenhalgh.bsky.social · 19/12/2023👀 covid19.public-inquiry.uk/documents/in...covid19.public-inquiry.ukINQ000339040 - Letter to the Inquiry from Mr David Tomlinson, Consultant Cardiologist and Electrophy...Letter to the Inquiry from Mr David Tomlinson, Consultant Cardiologist and Electrophysiologist, regarding the evidence of Professor Heneghan dated 03/11/2023. 4112
Reposted by Long Covid LadProf Sheena Cruickshank @sheencr.bsky.social · 29/11/2023Some of the evidence emerging in the #CovidEnquiry is really casting questions on the ‘ring of protection’ rhetoric. Utterly appalling. 3147
Reposted by Long Covid LadTom Kindlon @tomkindlon.bsky.social · 24/11/2023Donated David Tuller DrPH has shown he has a: -good skill set for this type of work -good knowledge base from following the field closely for many years -an appetite as it can be very draining Proponents of exercise/psychologicalisation/etc are still around #MEcfs #PwME #CFS #FND #LongCovid #MUS 0125
Reposted by Long Covid LadDr Nili Kaplan-Myrth, MD PhD @nilikm.bsky.social · 23/11/2023Popping in to say that patients are testing positive for #COVID19 in clinic. So many. Sore throat, headache, cough, fever. Don’t be the cause of a newborn, toddler, senior, pregnant person, essential worker, HCW, others ending up sick. #MaskUp, test, isolate, get your booster. 9247110
Reposted by Long Covid LadBen_no @ben-no.bsky.social · 20/11/2023I miss self-determination I miss spontaneousness I miss freedom I miss being able to take care for others I miss nature I miss light-heartedness I have #MECFS 54517
Reposted by Long Covid LadColette Rose (she/her) @coletterose.bsky.social · 15/11/2023#LoneMasker on the train heading to work this morning. Lots of uncovered wet coughing around me. Two coworkers currently out sick with COVID. Not a fan of this new normal. #CovidIsNotOver #MaskUp 0153
Reposted by Long Covid LadAlyssa Long @measuredandslow.bsky.social · 03/11/2023I finally found kids KN95 masks that actually fit, come in fun colors, and have all the certifications! Passing it on since I know lots of families that have been looking. All their testing info is linked on the product pages! greensupply.com/collections/...greensupply.comKids KN95 Masks For Sale - Best Kids KN95 Face MasksIn stock and shipping now! Green Supply has the best kids KN95 masks that are specially designed a child's head, helping protect them at the same level as standard adult sized KN95 face masks. 14237
Reposted by Long Covid Ladduleyp.bsky.social @duleyp.bsky.social · 01/11/2023If you know anyone with, #mecfs or #LongCovid pls ask them to take part in #DecodeME It's easy to participate in, filling in a questionnaire & then providing a spit sample if requested to, all from 🏠. It's a once in a lifetime opportunity to take part in v. imp. research into M.E. shorturl.at/bmxAX 2513
Reposted by Long Covid LadMaría Richardson @diatoma.bsky.social · 28/10/2023Dear fellow #pwME #MECFS #ME #MyalgicEncephalomyelitis #LongCovid, one of the most powerful/informative vids I know is now available on Youtube. @dialoguesmecfs.bsky.social created this extraordinary documentary on the history of #ME #MECFS. Essential info for advocates and researchers in our field. 0247
Long Covid Lad @longcovidlad.bsky.social · 29/10/2023The 💰 insurers saved by having the BPS model deny the medical reality of #ME/CFS is going to turn out to be a fraction of what #longcovid will cost them because the BPS lobby stalled actual research. Will we see a change in tone about covid risk generally once their financial results show this? 🤔 020
Long Covid Lad @longcovidlad.bsky.social · 29/10/2023Is it starting to get to the point where it makes more to invest in a cure than try and ignore it.independent.co.ukSymptoms of long Covid explained as almost two million people suffer in the UKCondition has more than 200 debilitating symptoms, reveals study 141
Long Covid Lad @longcovidlad.bsky.social · 28/10/2023@remissionbiome.bsky.social @drt.bsky.social @tessfalor.bsky.social This neuroinflammation study with PET scans is still recruiting. Might be worth seeing if we could get some before and after images for local participants? 153
Long Covid Lad @longcovidlad.bsky.social · 23/10/2023Link to a playback of Polybio Fall Symposium covering a lot of the latest cutting edge long covid research. 4.5 hours long but talks are 10 to 20 minutes each so digestible over a period of time is spoons are limited. Very interesting and hopeful stuff here. youtube.com/watch?v=278v... 110
Long Covid Lad @longcovidlad.bsky.social · 20/10/2023And this is only the folk who actually get support… 130
Reposted by Long Covid LadElana Levin @levin.bsky.social · 09/09/2023So many folks are sick again so I share this with love: you must rest. Rest won’t guarantee you don’t get long covid but it’s a huge mitigator. Even if you have an accute mild case. Even if you don’t feel it at all. Send this to your boss. Make your partner clean or use disposable dishes etc.time.comWhy You Should Rest—a Lot—If You Have COVID-19It could help prevent Long COVID 231643895
Reposted by Long Covid LadBrian Hughes @bmhughes.bsky.social · 18/10/2023It's that time of year again! Today I look at the history of so-called "Medically Unexplained Symptoms" with my students (part of our #pseudoscience class). Migraines? Rooted in "perfectionism" Ulcers? "stress" AIDS? "shame/guilt" MS? "childhood trauma" Tropes now recycled for #MECFS & #LongCovid 1818998
Reposted by Long Covid LadBrian Hughes @bmhughes.bsky.social · 17/10/2023You might have heard that Boris Johnson scrawled an expletive onto a document describing #LongCovid when managing the pandemic as UK prime minister. He also scrawled "Gulf War Syndrome stuff", another dismissive slur aimed at post-viral illness sufferers This is the picture (cf shorturl.at/npY28 ) 23311
Reposted by Long Covid LadLong Covid Lad @longcovidlad.bsky.social · 16/10/2023Yesterday’s covid minimisation BBC article makes sense if you consider it in light of election positioning for the Tory party. They messed up Covid, badly, and the covid inquiry will lay that bare. They can’t / won’t change that. So their only option is to make people think covid isn’t important 163
Reposted by Long Covid LadTom Kindlon @tomkindlon.bsky.social · 16/10/2023Voting is free every 7 days, shares are much appreciated mygivingcircle.org/invest-in-me... Invest in ME Research have won previously If they don’t reach the prize positions this time, all votes from this round will roll over to next round, so every vote really does count! #pwME #MEcfs #CFSmygivingcircle.orgNominate Invest in ME Research to share £300,000Each year MyGivingCircle gives away £300,000 11311
Reposted by Long Covid LadAmanda Shortman - she/her @aspiraldance.bsky.social · 16/10/2023Look what just arrived 👀 081
Reposted by Long Covid LadColette Rose (she/her) @coletterose.bsky.social · 16/10/2023As a COVID-cautious person, this truly feels like the darkest eve of fall/winter since the start of the pandemic. It feels like most of my formerly cautious loved ones have dropped masking & other precautions. The burden of having conversations about boundaries feels overwhelming. #CovidIsNotOver 4358
Long Covid Lad @longcovidlad.bsky.social · 16/10/2023Yesterday’s covid minimisation BBC article makes sense if you consider it in light of election positioning for the Tory party. They messed up Covid, badly, and the covid inquiry will lay that bare. They can’t / won’t change that. So their only option is to make people think covid isn’t important 163
Reposted by Long Covid LadSawyer 🌪️ @idea-alchemist.bsky.social · 16/10/2023Study shows neuro Long Covid may not clear virus due to weaker antibody responses. "These findings point to a pathogenic role for compromised anti-SARSCoV2 responses in the CSF, likely resulting in incomplete virus clearance from the brain and persistent neuroinflammation." shorturl.at/ixCI3 🩺🧪🧠📈 0104
Reposted by Long Covid LadTom Kindlon @tomkindlon.bsky.social · 15/10/2023UK Government Work Capability Assessment: Open Consultation From Science for ME forum: Proposed changes are likely to be harmful for people with #MECFS. We encourage participation in the consultation to point out the problems the changes will cause. Closing date: 30th October #PwME #CFS 1/ 163
Reposted by Long Covid LadFrank Hank @frank-hank.bsky.social · 15/10/2023This article is a joke. Apparently they used "experimental stats" to show flu killed more than covid. Utter minimizing rubbish. 021
Reposted by Long Covid LadFrank Hank @frank-hank.bsky.social · 15/10/2023www.bbc.com/news/health-... BBC claiming that covid no worse than flu now. Really?!?! 121
Reposted by Long Covid LadLong Covid Lad @longcovidlad.bsky.social · 15/10/2023If you ever wanted a crystal clear example of the BBC attempting to gaslight an entire county. A lengthy article making out covid is nothing more than a flu and folk avoiding it or testing for it are just anxiou.😡 Without a single mention of long covid. Or long term increased health risks. WTF?bbc.comIs Covid now just a regular winter bug? - BBC NewsThere were more flu deaths than Covid ones last winter - but for some, the fear remains. Why? 0112
Long Covid Lad @longcovidlad.bsky.social · 15/10/2023If you ever wanted a crystal clear example of the BBC attempting to gaslight an entire county. A lengthy article making out covid is nothing more than a flu and folk avoiding it or testing for it are just anxiou.😡 Without a single mention of long covid. Or long term increased health risks. WTF?bbc.comIs Covid now just a regular winter bug? - BBC NewsThere were more flu deaths than Covid ones last winter - but for some, the fear remains. Why? 0112
Long Covid Lad @longcovidlad.bsky.social · 15/10/2023Nice summary of key Remission Biome interventions from Dr T below. Check out the RB Youtube videos for more info on what and why.youtube.comRemission_Biome_in_a_NutshellThis is to introduce you all aspects of the Remission Biome Protocol in brief. 151
Long Covid Lad @longcovidlad.bsky.social · 15/10/2023Very covidy out there right now indeed. Made the effort to get out to a church service this morning due to a family connection. Only one masking in a congregation of 400+ at least 60 separate people in my side of the congregation coughing, never mind asymptomatic. I was the only one masking. N95. 161
Reposted by Long Covid LadIsabel Ramirez-Burnett @isabelrb.bsky.social · 15/10/2023The Microbiome's Impact on Health - my interview with Dr. Alessio Fasano ancestralhealth.substack.com/p/the-microb...ancestralhealth.substack.comThe Microbiome's Impact on HealthListen now | With Alessio Fasano, MD 043
Reposted by Long Covid LadLong Covid Advocacy @longcovidadvoc.com · 14/10/2023If this is in your campaigning playbook you need to think again on: ⚖️ Social Justice ⚖️ Intersectional Advocacy ⚖️ Ethics We can't punch down or exclude due to perceived self gain 🏆They win then as stigma & exclusion rule the narrative #ReclaimME 21810
Long Covid Lad @longcovidlad.bsky.social · 14/10/2023You can feel you’re doing ok with #ME/CFS when you’re lucky to have a day with low pain levels and no PEM. But then something makes you realise how small you’ve had to make your life to achieve this. Old me would have been out all day for #IREvsNZL. Now I’m debating if have the spoons to watch on TV 1110
Reposted by Long Covid LadJordan Roberts @corruptario.bsky.social · 13/10/2023Everyone thinks they are too clever to be taken in by propaganda, yet no one is wearing a mask. 14340129
Reposted by Long Covid LadLong Covid Kids @longcovidkids.bsky.social · 13/10/2023“We are still here and we must not be forgotten just because we can’t do the things we did before. We need someone who understands Long Covid to fight our corner” Rosie. Age 18. LC for 2 yrs Rosie outside the Covid Inquiry representing 62,000 children in the U.K living with #LongCovid #GiveUsHope 0134
Reposted by Long Covid LadTom Kindlon @tomkindlon.bsky.social · 13/10/2023From June "Money’s the motive for calling ME a myth" www.conservativewoman.co.uk/moneys-the-m... Screenshot from American ME and CFS Society newsletter mailchi.mp/9b03d55518be... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME 0138
Reposted by Long Covid LadTom Kindlon @tomkindlon.bsky.social · 12/10/2023New from Scotland: "People With #LongCOVID and #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (ME/CFS) Exhibit Similarly Impaired Vascular Function" Free fulltext: www.amjmed.com/article/S000... #MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC 1229
Reposted by Long Covid LadPete Caruso @petecaruso.bsky.social · 11/10/2023Findings at the recent Long Covid conference. www.healthrising.org/blog/2023/10...healthrising.orgSurprising Findings Dot Day 2 of the Keystone Long-COVID Conference - Health RisingWe continue to take a deep dive into the “Long COVID and Post Acute Sequalae of SARS CoV 2 (PASC): Pathogenesis and Treatment” first-ever international conference on long COVID. Long-COVID researc... 083
Reposted by Long Covid Ladlizwhatsherface @lizwhatsherface.bsky.social · 11/10/2023Are you confused about why some people are still wearing masks in public? Do you have questions about Covid you're too embarrassed to ask? Are you tired of being sick all the time? CovidHelp.org has a two-page summary of the info you need to stay safe and catch up.covidhelp.orgCOVID SAFETY 101 39836
Long Covid Lad @longcovidlad.bsky.social · 11/10/2023Useful intro for anyone looking to learn about mast cells. Many docs are not familiar with MCAS and histamine intolerance but it seems to play a part in a lot of Long covid symptoms. Formal diagnosis can be tricky but many folk are seeing good results taking steps to treat it as if they have it. 1103