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Long Covid Lad

@longcovidlad.bsky.social
164 followers 171 following 77 posts

Long covid since April 2020. R 50 participant. Trying to navigate a plethora of health conditions without any NHS support. #ME/CFS #POTS, #Long Covid, BBB dysfunction, #SIBO, #Leaky Gut, reactivated infections, #MCAS, Clots

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Long Covid Lad @longcovidlad.bsky.social · 24/02/2024
chng.it/nYCzQ5z2wk
chng.it
Urgent Action Needed to Save Millie: Help Us Demand Proper Treatment for Severe ME
I 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...
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Whitney Dafoe @whitneydafoe.bsky.social · 22/02/2024
NIH’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
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Dr. Lucky Tran @luckytran.com · 19/12/2023
In 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!
Yellow MTA sign with people wearing masks, wearing masks incorrectly, or wearing no mask at all. Text reads: Masks are encouraged, but optional. Under someone wearing a mask incorrectly, text reads: You do you@nycHealthy
Flu, COVID-19 and RSV are all currently spreading in NYC. Wearing a mask in public indoor spaces and crowded places can help protect you and also protect others if you’re sick. High-quality masks, such as N95s, KN95s and KF94s provide the best protection

[picture of snowman wearing an N95 mask with text saying "mask up"]
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Tom 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
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Trish Greenhalgh @trishgreenhalgh.bsky.social · 19/12/2023
👀 covid19.public-inquiry.uk/documents/in...
covid19.public-inquiry.uk
INQ000339040 - 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.
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Prof Sheena Cruickshank @sheencr.bsky.social · 29/11/2023
Some of the evidence emerging in the #CovidEnquiry is really casting questions on the ‘ring of protection’ rhetoric. Utterly appalling.
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Tom Kindlon @tomkindlon.bsky.social · 24/11/2023
Donated 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
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Dr Nili Kaplan-Myrth, MD PhD @nilikm.bsky.social · 23/11/2023
Popping 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.
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Ben_no @ben-no.bsky.social · 20/11/2023
I 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
+ BERLIN BUYERS CLUB +
I miss listening 
I miss seeing
I miss working
 I miss walking
 I miss dancing
 I miss thinking
 I miss feeling 
I miss myself
 I have ME/CFS
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Colette 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
Selfie of woman wearing a black FFP3 mask on a train with a train window in the background.
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Alyssa Long @measuredandslow.bsky.social · 03/11/2023
I 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.com
Kids KN95 Masks For Sale - Best Kids KN95 Face Masks
In 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.
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duleyp.bsky.social @duleyp.bsky.social · 01/11/2023
If 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
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María Richardson @diatoma.bsky.social · 28/10/2023
Dear 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.
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Long Covid Lad @longcovidlad.bsky.social · 29/10/2023
The 💰 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? 🤔
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Long Covid Lad @longcovidlad.bsky.social · 29/10/2023
Is it starting to get to the point where it makes more to invest in a cure than try and ignore it.
independent.co.uk
Symptoms of long Covid explained as almost two million people suffer in the UK
Condition has more than 200 debilitating symptoms, reveals study
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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?
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Long Covid Lad @longcovidlad.bsky.social · 23/10/2023
Link 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...
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Long Covid Lad @longcovidlad.bsky.social · 20/10/2023
And this is only the folk who actually get support…
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Elana Levin @levin.bsky.social · 09/09/2023
So 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.com
Why You Should Rest—a Lot—If You Have COVID-19
It could help prevent Long COVID
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Brian Hughes @bmhughes.bsky.social · 18/10/2023
It'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
Lecture slide with quotes claiming that migraines are caused by psychiatric issuesLecture slide showing information on stomach ulcers and how they are not caused by stressLecture slide with quotes claiming that AIDS was caused by psychological factors, with original article in which these quotes appearedLecture slide with quotes claiming that multiple sclerosis is caused by early childhood trauma and lack of positive bonding experiences, with original source (from 2002)
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Brian Hughes @bmhughes.bsky.social · 17/10/2023
You 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 )
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Long Covid Lad @longcovidlad.bsky.social · 16/10/2023
Yesterday’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
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Tom Kindlon @tomkindlon.bsky.social · 16/10/2023
Voting 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 #CFS
mygivingcircle.org
Nominate Invest in ME Research to share £300,000
Each year MyGivingCircle gives away £300,000
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Amanda Shortman - she/her @aspiraldance.bsky.social · 16/10/2023
Look what just arrived 👀
A small poetry book called The Inadequacy of Words by Amanda Shortman. The cover is white with a line drawing of a face over a pale blue splodge.
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Colette Rose (she/her) @coletterose.bsky.social · 16/10/2023
As 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
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Long Covid Lad @longcovidlad.bsky.social · 16/10/2023
Yesterday’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
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Sawyer 🌪️ @idea-alchemist.bsky.social · 16/10/2023
Study 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 🩺🧪🧠📈
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Tom Kindlon @tomkindlon.bsky.social · 15/10/2023
UK 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/
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Frank Hank @frank-hank.bsky.social · 15/10/2023
This article is a joke. Apparently they used "experimental stats" to show flu killed more than covid. Utter minimizing rubbish.
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Frank Hank @frank-hank.bsky.social · 15/10/2023
www.bbc.com/news/health-... BBC claiming that covid no worse than flu now. Really?!?!
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Long Covid Lad @longcovidlad.bsky.social · 15/10/2023
If 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.com
Is Covid now just a regular winter bug? - BBC News
There were more flu deaths than Covid ones last winter - but for some, the fear remains. Why?
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Long Covid Lad @longcovidlad.bsky.social · 15/10/2023
If 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.com
Is Covid now just a regular winter bug? - BBC News
There were more flu deaths than Covid ones last winter - but for some, the fear remains. Why?
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Long Covid Lad @longcovidlad.bsky.social · 15/10/2023
Nice summary of key Remission Biome interventions from Dr T below. Check out the RB Youtube videos for more info on what and why.
youtube.com
Remission_Biome_in_a_Nutshell
This is to introduce you all aspects of the Remission Biome Protocol in brief.
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Long Covid Lad @longcovidlad.bsky.social · 15/10/2023
Very 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.
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Isabel Ramirez-Burnett @isabelrb.bsky.social · 15/10/2023
The Microbiome's Impact on Health - my interview with Dr. Alessio Fasano ancestralhealth.substack.com/p/the-microb...
ancestralhealth.substack.com
The Microbiome's Impact on Health
Listen now | With Alessio Fasano, MD
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Long Covid Advocacy @longcovidadvoc.com · 14/10/2023
If 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
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Long Covid Lad @longcovidlad.bsky.social · 14/10/2023
You 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
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Jordan Roberts @corruptario.bsky.social · 13/10/2023
Everyone thinks they are too clever to be taken in by propaganda, yet no one is wearing a mask.
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Long 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
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Tom Kindlon @tomkindlon.bsky.social · 13/10/2023
From 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
Money’s the motive for calling ME a myth

Who benefits from calling ME a behavioural disorder? Margaret Williams (pseudonym), a retired senior NHS clinician, argues in The Power of Propaganda: ‘There can be no doubt that the Wessely School have substantial conflicts of interest as they are involved with and work for the permanent health insurance industry . . . Their aim is to ensure that people with ME/CFS are removed from disability payment: UNUM’s [a leading life and disability insurance company] CFS Management Plan clearly states: “Diagnosis: Neurosis with a new banner”; Attending physicians [must] work with UNUM rehabilitation services in an effort to return the patient/claimant back to maximum functionality with or without symptoms.’ Read the full text here>>
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Tom Kindlon @tomkindlon.bsky.social · 12/10/2023
New 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
Screenshot of abstract
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Long Covid Lad @longcovidlad.bsky.social · 12/10/2023
This captures it perfectly.
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Pete Caruso @petecaruso.bsky.social · 11/10/2023
Findings at the recent Long Covid conference. www.healthrising.org/blog/2023/10...
healthrising.org
Surprising Findings Dot Day 2 of the Keystone Long-COVID Conference - Health Rising
We 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...
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lizwhatsherface @lizwhatsherface.bsky.social · 11/10/2023
Are 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.org
COVID SAFETY 101
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Long Covid Lad @longcovidlad.bsky.social · 11/10/2023
Useful 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.
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