Discover and read the best of Twitter Threads about #postviral
Most recents (9)
Today (well, yesterday now) is #MEAwarenessDay. I've been one of the #MillionsMissing since age 16. I turned 23 last week.
There are so many things I could say about life with #SevereME, so many alarming statistics & horrifying, heartbreaking stories. (1/8)
There are so many things I could say about life with #SevereME, so many alarming statistics & horrifying, heartbreaking stories. (1/8)
But I don't have the physical or cognitive capacity to. So if there's just one thing you take away from this thread, whoever you are, please know:
We were and are people. We had lives, and often still have big hopes & dreams despite being mostly or completely bedbound. (2/8)
We were and are people. We had lives, and often still have big hopes & dreams despite being mostly or completely bedbound. (2/8)
Most of us cannot tolerate basic sensory input so we must live in darkness, silence, isolation. Many are unable to speak and/or communicate due to neurological effects. Some cannot tolerate a comforting hug, a gentle touch – and this disease happens to children too. (3/8)
🧵
“What Is #LongCOVID—and How Are We Going to Solve It? This potentially life-altering post-viral syndrome may have affected as many as 23 million Americans (and counting)”
Contains quite a bit of discussion about #MEcfs
prevention.com/health/health-…
#CFS #PwLC #PwME #CFSME
1/
“What Is #LongCOVID—and How Are We Going to Solve It? This potentially life-altering post-viral syndrome may have affected as many as 23 million Americans (and counting)”
Contains quite a bit of discussion about #MEcfs
prevention.com/health/health-…
#CFS #PwLC #PwME #CFSME
1/
2/
“We’re starting to gain more understanding of what’s driving #longCOVID & who is most at risk, & the more we understand, the more it will help us get a grip on similar chronic illnesses, like #MECFS, that have been largely ignored for far too long” - @VirusesImmunity
#CFD
“We’re starting to gain more understanding of what’s driving #longCOVID & who is most at risk, & the more we understand, the more it will help us get a grip on similar chronic illnesses, like #MECFS, that have been largely ignored for far too long” - @VirusesImmunity
#CFD
3/
“In those who felt ill from #postCOVID19 syndrome for at least six months, the most common symptoms were fatigue, cognitive dysfunction, & post-exertional malaise (a triad that besets many people with #MECFS), according to the study” of 3762 patients by @patientled
#LongCovid
“In those who felt ill from #postCOVID19 syndrome for at least six months, the most common symptoms were fatigue, cognitive dysfunction, & post-exertional malaise (a triad that besets many people with #MECFS), according to the study” of 3762 patients by @patientled
#LongCovid
News from Germany 🩸: Why coffee and cake? Because finally I can 🎉
3 months into treatment for #MECFS microclots, I’m opening up on this piece of the puzzle for me: 🧵 1/n
#TeamClots #PostViral #MyalgicEncephalomyelitis
3 months into treatment for #MECFS microclots, I’m opening up on this piece of the puzzle for me: 🧵 1/n
#TeamClots #PostViral #MyalgicEncephalomyelitis
This was me in April this year. 18 months into significant relapse following a tonsillectomy and chronic infections. #pwME 2/n
In 2008, I worked full time in retail and was looking to begin acting classes. I lived an active life full of social, creative, sporting and spiritual activities that brought me joy and meaning. 3/n
📷: Ocean Kayaking in July 2008
📷: Ocean Kayaking in July 2008
🧵 Our guidebook provides information, support and signposting.
📕 Chapters for young people, parents & caregivers & schools.
🔬Evidence based information & case studies
🤗 Nobody has to feel alone.
To learn more ⬇️
longcovidkids.org/support-guide
#LongCovid #LongCovidKids
📕 Chapters for young people, parents & caregivers & schools.
🔬Evidence based information & case studies
🤗 Nobody has to feel alone.
To learn more ⬇️
longcovidkids.org/support-guide
#LongCovid #LongCovidKids
Long Covid Kids started as a grassroots organisation in September 2020.
In October 2021 we became a registered charity.
Our patron is beloved children’s author @MichaelRosenYes
#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children
In October 2021 we became a registered charity.
Our patron is beloved children’s author @MichaelRosenYes
#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children
With the support of experts, scientists, paediatricians, doctors, nurses, researchers, advocates, occupational therapists, physiotherapists teachers & educational psychologists our team of volunteers created a guidebook to raise awareness & educate.
#LongCovidKids #LongCovid
#LongCovidKids #LongCovid
1) How I cured my #LongCovid in 3mos after suffering for almost a year. This was my last hope. I researched what #Covid does to the body, came up with a list of "clinically studied" supplements and...
2) took them all. Firstly, I am not a MD. In March 2021 I caught Covid while working as a #frontline #healthcare worker. My symptoms of #brainfog, #fatigue, #jointpain, #muscleweakness, morning #stiffness happened after my recovery. At the time, this #postcovid #syndrome was...
3) was just starting to be discussed online. The the term #Longhauler was coined. Those in the #ME, #CFS, #Lyme #MCAS #community starting speaking out about the similarity of #symptoms with #LC. #Covidclinics started to sprout up, include one at the....
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 >
thisiswellless.com
#pwME #NEISvoid #FBLC #LongCovidWork #LongCovidCosts #TreatLongCovid #CountLongCovid #miilionsmissing #HealthEquity #patientled #medtwitter #wellless
A THREAD >
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
@long_covid @longcovidwork @actionforme @chronicinclude #EDS #PoTS #postviral
![Image shows a new healthcare spectrum from Well[ness] throug](https://pbs.twimg.com/media/FGO9JzfWYAMZmtQ.png)
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
Re @bmj_latest article last week ‘moving beyond controversy’ #LongCovid & #MECFS
Article that imho largely added to & repeated controversy & ignored much recent research
For which I was interviewed & quoted
There r things I REALLY need to make clear
1/6
bmj.com/content/373/bm…
Article that imho largely added to & repeated controversy & ignored much recent research
For which I was interviewed & quoted
There r things I REALLY need to make clear
1/6
bmj.com/content/373/bm…
2/6
I didnt see or review article prior to publication, I solely approved my quote.
During the lengthy interview, on ‘the debate over exercise & what should be happening’ I shared up to date referenced evidence of science behind PEM, potential harms of GET, debunking of PACE
I didnt see or review article prior to publication, I solely approved my quote.
During the lengthy interview, on ‘the debate over exercise & what should be happening’ I shared up to date referenced evidence of science behind PEM, potential harms of GET, debunking of PACE
3/6
Rather than respond myself, I highly recommend reading responses to the article, inc @DianeOLeary @DecodeMEstudy @MEResearchUK Dr Shepherd @MEAssociation
Though I was glad of opportunity to warn of dangers of PEM, for full thoughts pls see this video
Rather than respond myself, I highly recommend reading responses to the article, inc @DianeOLeary @DecodeMEstudy @MEResearchUK Dr Shepherd @MEAssociation
Though I was glad of opportunity to warn of dangers of PEM, for full thoughts pls see this video
1/6 "Ce n’est que quand ma médecin de famille a assisté à une conférence sur la #COVID longue durée par le physiothérapeute @SimonDecary (...) qu’elle s’est rendue compte de par les rechutes que je faisais après des efforts que j’avais une mononucléose longue !"
#PostViral
#PostViral
2/6 Quelques précisions :
Selon les sources, le nombre de malades en 🇫🇷 est plutôt de 150 à 500 000....
Nous utilisons le terme #EM dans lequel le #MalaisePostEffort est un critère obligatoire tandis que le SFC est fourre-tout, incluant les troubles "somatoformes" :
Selon les sources, le nombre de malades en 🇫🇷 est plutôt de 150 à 500 000....
Nous utilisons le terme #EM dans lequel le #MalaisePostEffort est un critère obligatoire tandis que le SFC est fourre-tout, incluant les troubles "somatoformes" :
3/6 Voici ce qu'entraîne la nomination SFC :
« Je me souviens vaguement d’avoir lu une vignette clinique sur le SFC durant mes études de médecine, mais je n’en ai seulement retenu que ça semblait très psychosomatique. J’avais donc moi aussi ce préjugé-là".
« Je me souviens vaguement d’avoir lu une vignette clinique sur le SFC durant mes études de médecine, mais je n’en ai seulement retenu que ça semblait très psychosomatique. J’avais donc moi aussi ce préjugé-là".
ADVICE FOR #LongCovid
There IS good advice available to help with #LongCovid
#postviral #ME fatigue symptoms
There r also Snake oil salesman & opportunists looking to make money from your ill health
I was asked to collate some resources & help
PLEASE SHARE & ADD TO THREAD👇 1/6
There IS good advice available to help with #LongCovid
#postviral #ME fatigue symptoms
There r also Snake oil salesman & opportunists looking to make money from your ill health
I was asked to collate some resources & help
PLEASE SHARE & ADD TO THREAD👇 1/6
@MEAssociation
Meassociation.org.uk/2020/11/me-ass…
Free leaflets, including comprehensive summary of latest advice & guidance re rest/pace (see photo)
Also see their advice leaflet re activity management & pacing (£1)
Meassociation.org.uk/2020/11/me-ass…
Free leaflets, including comprehensive summary of latest advice & guidance re rest/pace (see photo)
Also see their advice leaflet re activity management & pacing (£1)
@theRCOT
Rcot.co.uk/conserving-ene…
(Royal college of Occupational therapists)
Info & details re The 3 Ps principle (Pace, Plan and Prioritise)
Learning to pace, plan and prioritise your daily activities will help you to save energy.
Rcot.co.uk/conserving-ene…
(Royal college of Occupational therapists)
Info & details re The 3 Ps principle (Pace, Plan and Prioritise)
Learning to pace, plan and prioritise your daily activities will help you to save energy.
