Discover and read the best of Twitter Threads about #fblc

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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

๐Ÿงต
#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/archiveโ€ฆ
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 โ€“ a common diagnosis for a lot of folks with #LongCovid. She detailed her story in @autostraddle: autostraddle.com/the-soft-butchโ€ฆ
Also in August 2020, @mileswgriffis wrote a beautiful essay in @adventurevida about navigating the uncertainty of #LongCovid: adventure-journal.com/2020/08/livingโ€ฆ. 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/witโ€ฆ
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/historโ€ฆ
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 โ€œwell-lessโ€ 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/witโ€ฆ
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/historโ€ฆ
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/historโ€ฆ
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
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/historโ€ฆ
Read 5 tweets
I'm taking on the @MayoClinic's cruel & harmful practice of prescribing exercise & CBT to #LongCovid patients & #pwME that experience post exertional malaise (PEM).

I'll work to add to this ๐Ÿงต over the weekend, but would love some help. #MECFS #FBLC @dianaberrent @MEActNet
Long thread that helps explain why I'm so upset & what happened

The @MayoClinic published this one themselves ๐Ÿฅด

"...treatments, such as cognitive-behavioral therapy (CBT) and graded exercise therapy (GET), that could worsen their condition."

mayoclinicproceedings.org/article/S0025-โ€ฆ
Read 24 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/ULQGkRWa1eygrhโ€ฆ

#TweetsOfTheWeek
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.

hive.blog/twitter/@sydesโ€ฆ
Read 140 tweets
Advertisement

#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/givโ€ฆ
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
Advertisement

If you would like to advertise or know a good cause to promote on my tweets DM me.
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.

hive.blog/twitter/@sydesโ€ฆ
Read 133 tweets
1) We have been politely asking the @NHSuk to update its child #COVID19 symptom list since the end of 2020.

How can we expect families to recognise #COVID symptoms if they are not clearly listed?
We are deeply concerned.
#Backtoschool
#Longcovidkids

nhs.uk/conditions/corโ€ฆ
2) @CDCgov list updated Dec 2020 is more comprehensive

Fever
Fatigue
Headache
Myalgia
Cough
Nasal congestion
New loss of taste or smell
Sore throat
SOB or difficulty breathing
Abdominal pain
Diarrhea
Nausea/vomiting
Poor appetite / poor feeding

cdc.gov/coronavirus/20โ€ฆ
3) Let's compare, the @NHSEngland list alongside the #longcovidkids list.

We URGENTLY need to see the #NHS website updated before kids go #BacktoSchool2021

We know that #Delta is more transmissible.
We know that there has

#misinformation #symptoms #longcovid #FBLCK #FBLC
Read 9 tweets
This is a #FollowFriday tweet for the following hashtags:

#FBPE
#FBPEGolbal
#FBFindland
#FBFIN
#FBIW
#FBSI
#FBLC

Happy Midsummer "Hyvรครค juhannusta"

#FF #FollowBackFriday #FBFriday #FBF #Donation bit.ly/3zb4U37

'+' denotes follow back accounts.

To get your '+' mark or change your hashtag fill out the form bit.ly/3n453zq
Read 86 tweets

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