Discover and read the best of Twitter Threads about #FBLC

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Three years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing grassroots movement of people, who weren't recovering from covid. Across the world, we're still fighting for research and treatment of our disease ImageImageImageImage
#LongCovid as a disease concept first grew out of a collective, grassroots, international, patient-driven movement of Covid survivors in early—mid 2020. As a disease entity, LC was recognized by the WHO in August 2020 thanks to intense patient advocacy

sciencedirect.com/science/articl…
Today Covid—Long Covid are—is among the most studied diseases in medical history. A search on the repository for scientific papers PubMed for *covid gives over 355,000 results. Papers include vast research on the long-term effects of SARS-CoV-2 infection

pubmed.ncbi.nlm.nih.gov/?term=Covid
Read 9 tweets
My 3rd Covid anniversary. The day my life was ripped away from me. My “mild” case that I thought I easily recovered from, until a few weeks later when it came back with a vengeance and never left again. /1
#longcovid #fblc #MedTwitter #covid19
I had never spent a night in the hospital before and that first year I spent 3 weeks. I went to the emergency room 4 different times, begging to know what was wrong with me. One of those times, when my oxygen dropped into the 70s every time I stood up and I was admitted, /2
my husband and I said goodbye genuinely thinking it would be the last time. I went from working out 4 days a week and being a smart, energetic, go getter, to a person who couldn’t stand in the shower, couldn’t remember the name of basic things, couldn’t drive. Long stretches /3
Read 11 tweets
ATTENTION FRIENDS! Can you help us reach our new goal?

We want to get to 150,000 signatures before March 15th 2023.

On March 15th, International #LongCovid Day, we want to take the campaign to Westminster!
It’s a big ask. We know. It means asking you to share this thread, contact your elected representatives, telling everyone you know, sharing this across social media. More than once. But we are about 39,000 off our goal and we think we can do it. #longcovid #pwLC #FBLC
It is pretty clear to us that there is a growing number of people who believe #keyworkers with #longcovid who are in difficult straits now are in this position because of their job. It’s obvious you all agree with @AppgCoronavirus recommendations about a compensation & pension
Read 28 tweets
Long COVID Physio International Forum #LCPForum recordings from Day 1 are now available 💙 🧵 Image
#LCPForum Day 1 open and welcome with @darrenabrown @PTPintcast @ThePhysiFro & Dr Richard Nielsen @RMUoHP
Read 19 tweets
Tomorrow! We begin the Long COVID Physiotherapy International Forum #LCPForum! Before we get started in 1 day, we want to thank 🌟EVERYBODY🌟 supporting, involved and working behind the scenes. Thank you 🙏🏻 #LongCOVID #FBLC #GlobalPT Long COVID Physio International Forum  #LCPForum   1 day unt
We also want to wish everybody a fantastic #worldPTday today, which on this day last year @WorldPhysio1951 provided #LongCOVID resources available in over 60 different languages longcovid.physio/quick-access
Registration is still open to join us live or access recordings on demand #LCPForum
longcovid.physio/forum
Read 4 tweets
Two years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing, grassroots movement of people who weren't recovering from covid. Across the world, we were fighting for recognition and studying our own disease

🧵
#LongCovid is now one of most studied diseases in history. It's not "rare" or "mysterious". It was recognized by the WHO in August 2020 already, after an history-making meeting with advocates and patient-researchers. We have come that far.

theatlantic.com/health/archive…
And yet, this pandemic is a mass disabling event. Treatment options, open communication, and support for patients are still lagging behind. We will not stop fighting for the rights of people living with #LongCovid and other complex chronic diseases.
Read 28 tweets
My solidarity to all healthcare professionals, including nurses, who contracted covid at work and are now living with #LongCovid. It is of paramount importance healthcare professionals, as well as other people living with Long Covid, are fully supported
As we have just passed #NursesDay it is important to consider how much talent and expertise can be lost, if optimal care and support pathways aren't implemented by providers and employers. Healthcare professionals are among the most hit by #LongCovid
The loss of healthcare expertise to #LongCovid is a huge hit for providers and new patients alike. Healthcare systems are under severe duress in this pandemic.
And, as usual, my solidarity to all sufferers beyond age, gender, and profession
Read 4 tweets
#FollowFriday tweet for the following hashtags for 10th March 2022:

#FBPE
#FBPEGolbal
#FBFinland
#FBFIN
#FBIW
#FBSI
#FBLC

Follow everyone who Comments/Likes/Retweets this tweet.

#FF #FollowBackFriday #FBFriday #FBF #FollowBack #Ukraine #SlavaUkraini Image
'+' denotes follow back accounts.

To get your '+' mark or change your hashtag fill out the form bit.ly/3n453zq
Read 4 tweets
This is a #FollowBackFriday tweet for the following hashtags for 11th February 2022:

Follow everyone who Comments, Likes or Retweets this tweet.

#FBPE
#FBPEGolbal
#FBFinland
#FBFIN
#FBIW
#FBSI
#FBLC

#FBFriday #FBF #FollowFriday #FF #RejoinEU
'+' denotes follow back accounts.

To get your '+' mark or change your hashtag fill out the form bit.ly/3n453zq
Read 3 tweets
This is a #FollowFriday tweet for the following hashtags for 3rd February 2022:

#FBPE
#FBPEGolbal
#FBFinland
#FBFIN
#FBIW
#FBSI
#FBLC

Follow everyone who Comments, Likes or Retweets this tweet.

#FF #FollowBackFriday #FBFriday #FBF #FollowBack #RejoinEU Image
'+' denotes follow back accounts.

To get your '+' mark or change your hashtag fill out the form bit.ly/3n453zq
Read 4 tweets
Watching new C19 infections turn into #LongCovid this week on Twitter has been difficult. I'm still shocked at how little most people know. Luckily, info on this illness exists, thanks to those who experienced it in earlier waves. I want to share some of that first-hand guidance:
In August, 2020 @theheatherhogan wrote about contracting C19 and being diagnosed with dysautonomia – a common diagnosis for a lot of folks with #LongCovid. She detailed her story in @autostraddle: autostraddle.com/the-soft-butch…
Also in August 2020, @mileswgriffis wrote a beautiful essay in @adventurevida about navigating the uncertainty of #LongCovid: adventure-journal.com/2020/08/living…. This article delves into fatigue, isolation, and cycling symptoms.
Read 11 tweets
Policy makers should be talking more openly about #LongCovid
But, often, they wouldn't do it. The reason in my opinion is very simple. People would refuse any mass infection policy if they knew about the risks. Also, existing patients would become more vocal in asking for care
Pandemic policy has been generally being dictated by incompetence, short-term macro-economic thinking, and the needs of elite groups. The economic gains of a few have been put over the health and wellbeing of a multitude.
It's the same for debates over airborne transmission
#LongCovid, recognition of covid real nature --- it's a SARS like disease not a "cold" --- and #covidisairborne have been three of the most contentious topics in pandemic awareness.
Failure in addressing these issues drove the disaster which costed us ~5--15 million lives
Read 4 tweets
If you want to see all my tweets including my #Top1000 tweets go to my profile @SydesJokes and select 'Tweets & Replies'.

Or check the link twitter.com/SydesJokes/wit…
Retweet the main tweet for 50 Engagement Points.
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Engagement Points are how I determine the ranking on my #Top1000 list. I give points for Likes, Replies & Retweets of my tweets.

sydesjokes.blogspot.com/2021/09/histor…
Read 6 tweets
PHASE 1 LAUNCH! New study reveals yawning gap in medical care for energy-impaired
thisiswellless.com

#pwME #NEISvoid #FBLC #LongCovidWork #LongCovidCosts #TreatLongCovid #CountLongCovid #miilionsmissing #HealthEquity #patientled #medtwitter #wellless

A THREAD > Image shows 'energy' used for patient activities on a graph
Long-Covid visual report quantifies money, time, work and energy spent on the battle to get medical care, and introduces new language of the “well-less” to improve patient awareness and support.
@long_covid @longcovidwork @actionforme @chronicinclude #EDS #PoTS #postviral Image shows a new healthcare spectrum from Well[ness] throug
I tracked and analysed my own health interactions from 2020 across nine different self-data sources, including @BupaUK @Bupa , @LloydsBank , @timspector (Zoe Covid Symptom Tracking App(, email, SMS, mobile and calendar data #Datavisualization #selfanalytics #dataviz
Read 25 tweets
If you want to see all my tweets including my #Top1000 tweets go to my profile @SydesJokes and select 'Tweets & Replies'.

Or check the link twitter.com/SydesJokes/wit…
Retweet the main tweet for 50 Engagement Points.
Like the main tweet for 25 Engagement Points.

Engagement Points are how I determine the ranking on my #Top1000 list. I give points for Likes, Replies & Retweets of my tweets.

sydesjokes.blogspot.com/2021/09/histor…
Read 6 tweets
Retweet the main tweet for 50 Engagement Points.
Like the main tweet for 25 Engagement Points.

Engagement Points are how I determine the ranking on my #Top1000 list. I give points for Likes, Replies & Retweets of my tweets.

sydesjokes.blogspot.com/2021/09/histor…
Read 5 tweets
#LongCovid is the grassroots movement who changed how covid is understood and drew new attention to the huge clinical burden of viral-onset diseases and their complex pathophysiology
Patients're expert on their condition. They should be treated as such
Grateful for this community
Those with #LongCovid and allies in the (post) infection disease community #MEcfs have produced top notch advocacy, patient led research and science communication. We have contributed, and are contributing, to change the medical landscape around covid and other chronic diseases
It is of key importance that policy makers, some in the medical establishment, and in public health, fully understand the huge disease burden of SARS-CoV-2 infection and other viral-onset diseases
It is especially imperative in the case of a disease as severe as covid
#LongCovid
Read 6 tweets
For those who asked, this study is accepting those hot local to Miami whether you are still in Fl or are willing to travel to participate
(see parts 2-5 for more info)
Mention my name when reaching out (Karyn).
1/5
#FBLC #LONGCOVID #LONGHAULER #PASC #RESEARCH #STUDY #UofMiami
For those new to this. This is my myocarditis doc at university of Miami doing this study.
-Covid attacks our endothelium, which we have in every aspect of our body. We complain of blood pooling, bad veins, easy brushing, poor circulation, hr and bp issues.
2/5
A lot of this is likely from endothelial dysfunction which I believe *may* be the trigger of pots or dysautonomia in many of us.
- I only grew 1 of 6 tubes back showing endothelial dysfunction.
3/5
Read 5 tweets
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Engagement Points are how I determine the ranking on my #Top1000 list. I give points for Likes, Replies & Retweets of my tweets.

sydesjokes.blogspot.com/2021/09/histor…
Read 5 tweets
Nominate your Tweets of the Week

Nominate your best anti-Brexit/anti-Tory tweet of the week. People can nominate their own tweets. Tweets will be ranked according to how many times they were nominated.

forms.gle/ULQGkRWa1eygrh…

#TweetsOfTheWeek
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Engagement Points are how I determine the ranking on my #Top1000 list. I give points for Likes, Replies & Retweets of my tweets.

hive.blog/twitter/@sydes…
Read 140 tweets
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#RNLI Tower Appeal - Help Build A Lifesaving Landmark @RNLI

'For those in peril on the sea'

I grew up in London so this is close to my heart.

rnli.org/support-us/giv…
Tower lifeboat crew, based on the Thames, are the #UK's busiest. Help us to build them a new station that's fit for the future - and you'll be helping to keep #London people safe.
Read 141 tweets
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If you would like to advertise or know a good cause to promote on my tweets DM me.
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Engagement Points are how I determine the ranking on my #Top1000 list. I give points for Likes, Replies & Retweets of my tweets.

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Read 133 tweets

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