Long Covid Lad
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longcovidlad.bsky.social
Long Covid Lad
@longcovidlad.bsky.social
150 followers 170 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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longcovidlad.bsky.social
chng.it/nYCzQ5z2wk
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...
chng.it
February 24, 2024 at 12:04 AM
Reposted by Long Covid Lad
whitneydafoe.bsky.social
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
February 22, 2024 at 7:24 PM
Reposted by Long Covid Lad
luckytran.com
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"]
December 19, 2023 at 8:09 PM
Reposted by Long Covid Lad
tomkindlon.bsky.social
“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
December 19, 2023 at 12:23 AM
Reposted by Long Covid Lad
trishgreenhalgh.bsky.social
👀

covid19.public-inquiry.uk/documents/in...
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.
covid19.public-inquiry.uk
December 19, 2023 at 12:24 AM
Reposted by Long Covid Lad
sheencr.bsky.social
Some of the evidence emerging in the #CovidEnquiry is really casting questions on the ‘ring of protection’ rhetoric. Utterly appalling.
November 29, 2023 at 10:45 AM
Reposted by Long Covid Lad
tomkindlon.bsky.social
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
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Nov 1
Please Help David Tuller, Our Champion!

Link to donate: crowdfund.berkeley.edu/project/40018

Image taken from the American ME and CFS Society November 2023 newsletter

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
Please Help David Tuller, Our Champion! David Tuller’s fall fundraiser is now live! Tuller has been tireless in his battle against the GET/CBT ideological onslaught! He has much more work to do and he needs our support. You can donate here: https://crowdfund.berkeley.edu/project/40018 David launched the "Trial By Error" series with a 15,000-word investigation of the disastrous PACE trial, published on Virology Blog in October, 2015. The PACE trial tested graded exercise therapy and cognitive behavior therapy as treatments for ME/CFS. By now, David has written hundreds of blog posts about "that piece of crap" and other aspects of these issues not only in the UK but in the US, the Netherlands, Norway, Finland and many other countries. As part of this project, David also writes commentaries for academic journals and stories for major news organizations. But the struggle continues. Publishing guidelines is one thing; implementing them effectively is another. Opponents have mounted fier
November 24, 2023 at 3:04 PM
Reposted by Long Covid Lad
nilikm.bsky.social
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.
November 23, 2023 at 2:37 AM
Reposted by Long Covid Lad
ben-no.bsky.social
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
November 20, 2023 at 7:40 PM
Reposted by Long Covid Lad
coletterose.bsky.social
#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.
November 15, 2023 at 8:42 AM
Reposted by Long Covid Lad
measuredandslow.bsky.social
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/...
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.
greensupply.com
November 3, 2023 at 3:52 PM
Reposted by Long Covid Lad
duleyp.bsky.social
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
November 1, 2023 at 1:09 PM
Reposted by Long Covid Lad
diatoma.bsky.social
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.
dialoguesmecfs.bsky.social Dialogues ME/CFS @dialoguesmecfs.bsky.social · Oct 27
www.youtube.com/watch?v=6zks... 'The Tangled Story of ME/CFS:Controversy, Denigration and Ignorance' now on youtube. From 'Dialogues for a neglected illness,' a Wellcome Public Engagement Fund Award project, covers history and wider context for ME and CFS. More videos at www.dialogues-mecfs.co.uk
October 28, 2023 at 7:16 PM
longcovidlad.bsky.social
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? 🤔
October 29, 2023 at 10:40 AM
longcovidlad.bsky.social
Is it starting to get to the point where it makes more to invest in a cure than try and ignore it.
Symptoms of long Covid explained as almost two million people suffer in the UK
Condition has more than 200 debilitating symptoms, reveals study
www.independent.co.uk
October 29, 2023 at 10:33 AM
longcovidlad.bsky.social
@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?
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Oct 27
Sadly Michael posted this on Oct 22 after a similar Covid study came out:

"I've been recruiting for this same study in ME patients since before the pandemic, but people are not volunteering."

Please highlight widely 🙏

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
Study recruiting flyer with the headline “Brain Scan Study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Help us understand if ME/CFS is related to inflammation in the brain. The flyer explains that this study is located at the MAssachusetts General Hospital’s Martinos Center for Biomedical Imaging in Charlestown, MA, with up to 8 hours total of required participation and up to $250 in pay. Participants will provide blood and saliva samples, wear a device while sleeping, answer questions about their health and history, and complete a 1.5-hour PET-MR scanning session. During the scanning session, participants will receive an injection as blood is taken from an arterial catheter in your arm. Some parts of the study may be conducted remotely. This is a study designed to test a specific hypothesis about the cause of ME/CFS. It is not a treatment study.
October 27, 2023 at 11:05 PM
longcovidlad.bsky.social
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...
October 23, 2023 at 6:42 AM
longcovidlad.bsky.social
And this is only the folk who actually get support…
sheencr.bsky.social Prof Sheena Cruickshank @sheencr.bsky.social · Oct 20
Important study out in Lancet as pre-today reveals the cost of LongCovid for healthcare. The health journeys of >280000 people with LongCovid were tracked between 2020-23 and compared with controls. Healthcare provision was greater/month and increased over time which is a huge £££
Healthcare Utilisation of 282,080 Individuals with Long COVID Over Two Years: A Multiple Matched Con...
Background: In the UK alone, long Covid(LC) has affected over 2 million individuals, yet health system burden is poorly characterised. Understanding healthcare
papers.ssrn.com
October 20, 2023 at 7:07 AM
Reposted by Long Covid Lad
levin.bsky.social
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.
Why You Should Rest—a Lot—If You Have COVID-19
It could help prevent Long COVID
time.com
September 9, 2023 at 6:32 PM
Reposted by Long Covid Lad
bmhughes.bsky.social
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 issues Lecture slide showing information on stomach ulcers and how they are not caused by stress Lecture slide with quotes claiming that AIDS was caused by psychological factors, with original article in which these quotes appeared Lecture slide with quotes claiming that multiple sclerosis is caused by early childhood trauma and lack of positive bonding experiences, with original source (from 2002)
October 18, 2023 at 11:14 AM
Reposted by Long Covid Lad
bmhughes.bsky.social
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 )
October 17, 2023 at 7:55 PM
Reposted by Long Covid Lad
longcovidlad.bsky.social
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
luckytran.com Dr. Lucky Tran @luckytran.com · Oct 16
"There’s plenty of masking, but not the kind that prevents infection. The government is masking its failure. It’s masking the ableism its rhetoric has encouraged. It’s masking the cruelty of a system that shuts down the lives of clinically vulnerable people." — @georgemonbiot.bsky.social
Covid deaths are on the rise again, so what happens? Mask-wearing in hospitals is scrapped | George ...
The only masking that’s going on is that of the government’s continued failure to get to grips with the virus, says Guardian columnist George Monbiot
www.theguardian.com
October 16, 2023 at 9:40 AM
Reposted by Long Covid Lad
tomkindlon.bsky.social
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
Nominate Invest in ME Research to share £300,000
Each year MyGivingCircle gives away £300,000
mygivingcircle.org
October 16, 2023 at 5:24 PM