Long COVID Physio
@LongCOVIDPhysio
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#LongCOVIDPhysio is an international peer support, education and advocacy, patient-led association of Physiotherapists living with #LongCOVID & allies
Joined November 2020
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Last Seen Profiles
Pinned Tweet
We are so excited to share the
#LCPForum
sessions recordings
Available tomorrow on
@YouTube
Tuesday 01-Nov-2022
#LongCOVID
🇬🇧
#covidpersistente
🇪🇸
#COVIDLong
#ApresJ20
🇫🇷
#COVIDLonga
🇧🇷
#GlobalPT
#FBLC
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New Video Released Today🎉
“Impact of
#LongCOVID
on Day-to-Day Life”
This 5th instalment of the Long COVID Video Series, in partnership with
@fisiocamera
, has been co-produced with people living with Long COVID, sharing their stories
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New
#LongCOVIDPhysio
video series released today on “what are common
#LongCOVID
symptoms?” … part 1 👇 (and part two in the thread 🧵 below)
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705
Graded exercise therapy should not be recommended for patients with post-exertional malaise
#PEM
/ post exertional symptom exacerbation
#PESE
@NatRevCardiol
#ME
#MECFS
#LongCOVID
@FvRhijn
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🚨New Release Today🚨
Safe
#LongCOVID
Rehabilitation
Created by
@LongCOVIDPhysio
in partnership with
@fisiocamera
Clink on link below 🔗👇 to access video with closed captions (which can be translated), audio only, and written transcript.
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Today is the first
#LongCOVIDAwarenessDay
to raise visibility and awareness of the global scale of
#LongCOVID
affecting more than 65 million people around the world, as well as their families and society. Today we join our community in solidarity 🖤💚🤍
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New Episode of our
#LongCOVID
Video Series released today 💙
⚖️
#Pacing
⚖️
Click on link 👇 to watch video, listen to audio only, or read transcript (audio as text).
Thank you to all involved 🙏🏻💙
@fisiocamera
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Today patient-led
#LongCOVID
organisations write an open letter to
@NICEComms
urging them to publish the
#MECFS
guidelines without further delay
#PublishThatGuideline
. We stand in solidarity with ME/CFS organisations and individuals
#MillionsMissing
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“Episodic Nature of
#LongCOVID
” is the fourth video in our
#LongCOVIDPhysio
Video Series in partnership with
@fisiocamera
Watch the rest of the video 👇
@darrenabrown
@KellyOBrien25
@LindsaySkipper
@UofT_PT
@BSMSMedSchool
#FBLC
#GlobalPT
#EpisodicDisability
#DisabilityTwitter
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Decreased Fatty Acid Oxidation and Altered Lactate Production during Exercise in Patients with Post-acute COVID-19 Syndrome
👉 study provides the first evidence of mitochondrial dysfunction that advances our understanding of
#LongCOVID
pathogenesis
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As Physiotherapists we disagree with you!
As experts in our field, we’re fully supportive of those that challenged you.
It is unhelpful to talk about a profession as if it is an intervention, and equally unhelpful to misquote NICE guidelines. The make it clear … No GET👇
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🚨🚨🚨NEW WEBSITE 🚨🚨🚨
We have a brand new
#LongCovidPhysio
website & we are so happy 🎉 You can learn about us, listen to podcasts, read our blogs, access
#LongCovid
#COVID19
learning resources, read our work, & find peer support. All on this link 👇
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Clarity needed and accurate translation of science needed here! These results are not applicable to all with
#LongCOVID
because:
👉Small sample size (n=30)
👉No control group
👉Mostly hospitalised
👉No screening of post exertional symptom exacerbation
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Today is
#WorldPTDay
&
@WorldPhysio1951
have provided information sheets
#GlobalPT
starting with
👉What is
#LongCOVID
?
#CovidLong
#apresJ20
#COVIDLongue
#LangzeitCovid
#pitk
äcovid
#covidpersistente
#MitCoronaLeben
#koronaoire
#longhaulers
#l
ångtidscovid
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The relevance of
#pacing
strategies in managing symptoms of post-COVID-19 syndrome
#LongCOVID
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248
Published today in partnership with
@HIVandRehab
@LongCOVIDPhysio
@UofTCOVIDRehab
@PhysioCan
“Return to Work for People Living with
#LongCOVID
: recommendations for employers, insurers, human resources personnel and rehabilitation professionals”
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Seeking adults living with
#LongCOVID
in Canada, Ireland, US & UK to participate in Long COVID & Episodic Disability Study
To assess a questionnaire for its ability to measure disability experienced by ppl with Long COVID
Click link to learn more:
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They are all available for our
#GlobalPT
family to use NOW in clinical practice. They can also be used by people living with affected by
#LongCOVID
to support your own needs. We particularly love this info sheet about
#PESE
#PEM
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“What’s really surprising is the number of previously fit and healthy individuals who went on to develop
#LongCovid
. I’ve lost count of the number of patients who tell me, ‘This isn’t right; I used to run marathons; I kept in shape,’ None of that seems to matter.” -
@PutrinoLab
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We are very excited to announce a new partnership with
@DoctorsWithME
. At
#LongCOVIDPhysio
we believe that partnerships are important to connect and create change. We are excited to work closely across
#LongCOVID
and
#MECFS
with our new partners 💙
9
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What is safe
#LongCOVID
#rehabilitation
?
Publication based on
#LCPForum
discussion session with
@BreathewellPT
@darrenabrown
@IppokratisAnge1
@JonesFio
@KellyOBrien25
@OnTapPhysio
@SueYFC
@racheltarrant5
@MVGutierrezMD
@DP_Gross
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What is
#LongCOVID
? Today we release the first of our
#LongCOVIDPhysio
video series in partnership with
@fisiocamera
, where we describe what is Long COVID, including clinical definitions
#FBLC
. Thanks to
@La_Vavva
@darrenabrown
@ThePhysiFro
@LindsaySkipper
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Pacing continues to be our most effective
#LongCOVID
management and rehab strategy … NOT exercise
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This study identifies that vascular stress (macro- and micro-circulation) seen in
#LongCOVID
fatigue, is equivalent to the transient fatigue associated with high-intensity exercise.
Translation: Long COVID fatigue may feel like running endless marathons
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"Why is it called
#LongCOVID
?" is our NEW second episode of the
#LongCOVIDPhysio
video series in partnership with
@fisiocamera
. This video received consultation from
@elisaperego78
&
@Dr2NisreenAlwan
and was peer reviewed by
@LongCOVIDPhysio
executive board.
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#LCPForum
@PutrinoLab
“We need precision medicine. There are different types of fatigue. And fatigue is not the same as exercise intolerance, and not the same as post exertional symptom exacerbation
#PESE
#PEM
”
#LongCOVID
#FBLC
#GlobalPT
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#LCPForum
@BinitaKane
“If tests are normal that does not mean there’s is no pathology. It means we don’t have the right tests”
#LongCOVIDKids
@LongCovidKids
#LongCOVID
#FBLC
#GlobalPT
@fisiocamera
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Findings from
@Yale
invasive cardiopulmonary exercise testing (iCPET) support a clear physiologic abnormality underpinning
#LongCOVID
symptoms, dispelling harmful myths (eg: deconditioning) around post-COVID exercise intolerance
#GlobalPT
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We know how disappointing this news is to many living with
#ME
#MECFS
. We stand in solidarity with communities affected and hope for an outcome that best supports people living with and affected by ME, soon.
NICE pauses publication of updated guideline on diagnosis and management of ME/CFS. Read more here:
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Four new announcements today about the Long COVID Physio International Forum
#LCPForum
👉 Registration is now open 🎉
👉 Full programme available
👉 Speakers list revealed
👉 Learning objectives announced
Find out more🧵
#LongCOVID
#FBLC
#GlobalPT
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The session on Post-Exertional Symptom Exacerbation (PESE) begins!
@sunsopeningband
emphasizes that PESE is more than tired, more than fatigue. It is exhaustion often combined with concentration, memory, pain, nausea and other symptoms.
#LongCovid
#LCPForum
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We are very excited to be launching our new
#LongCOVID
educational video series this week, in partnership with
@fisiocamera
. Watch out for the first video coming very soon
#FBLC
. The video series will cover different topics. More info to be released this week 😊
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54
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People with
#LongCOVID
and/or
#MECFS
experiencing
#PESE
/
#PEM
do not have “Boom and Bust”.
This is an example of patient blaming language.
Staff in our Post COVID-19 Syndrome MDT Assessment clinic (or Long Covid clinic) have created a resource for new service users
👉
They would also like to hear about your experience if you have already used the service.
#teamSHSCT
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Ballet will not address ANY of the mechanisms causing
#LongCOVID
… we need real research! Not ballet!
See proper research questions 👇
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Pacing is an approach used to balance rest and activities, to avoid worsening symptoms. It is safe for people living with
#LongCOVID
and other energy limiting conditions eg:
#ME
#MECFS
. Learn more about pacing 👇
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Panelists are discussing deconditioning. Patients became unwell using the deconditioning model of rehabilitation. Thinking of a dysregulation model may be more helpful per OT Sue Pemberton - work on regulating sleep, eating, blood pressure, autonomic function, etc. Avoid PESE
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As Physiotherapists living with
#LongCOVID
we call on
@ESSA_NEWS
to stop funding this research. We would invite the funders and researchers to talk with us about WHY this research is harmful and not wanted by those of use living with the condition
#NothingAboutUsWithoutUs
Delighted to share that we have been supported by ESSA (Exercise & Sports Science Association of Australia) to the tune of $50 000 to continue our research in exercise in Long COVID in Canberra. Shout out to the whole multidisciplinary team!
@UniCanberra
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We know a number of articles recently have invalidated the experiences of people living with
#LongCOVID
. We will not draw attention to them, or argue with people promoting them. We will centre our energies on compassion, kindness, and honouring the stories of those affected.
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The first Chair of Long COVID Physio
@darrenabrown
reflects on the past 2+ years, as he hands on the baton of leadership to an exiting new team
#LongCOVID
#GlobalPT
#Physiotherapy
#Blog
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New
#LongCOVIDPhysio
blog from
@AlyssaaErinn
"Joining the Frontlines of Advocacy" as a Physiotherapist living with
#LongCOVID
and the lessons from
#ME
#MECFS
and other marginalised groups
4
44
144
“Appropriate
#exercise
is movement from which the patient recovers”
@sunsopeningband
#LongCOVID
#MECFS
#GlobalPT
#AHPsDay
4
34
147
Well here’s another piece to the puzzle …
#LongCOVID
cannot be psychosomatic if
@NHSBT
will not let people with Long COVID donate blood.
Building on the existing mountain of evidence of biomedical and physiological changes associated with
#LongCOVID
🚨 Did you know… ‘NHS Blood & Transplant’ states that you cannot donate blood if you have
#LongCovid
:
“If you have been diagnosed with Long Covid or have had symptoms for over 12 weeks then you need to wait until it is at least 6 months since all symptoms have gone”
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@scottishballet
would like to explore dance and ballet to treat
#LongCOVID
When will it ever end! 😳
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New case definition of
#LongCOVID
announced today by
@WHO
reflecting the impact on functioning in day to day life (disability) and episodic nature (fluctuating or relapse)
#GlobalPT
3
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Ciara Breen, an occupational therapist, describes the importance of thinking about cognition in
#LongCovid
.
#LongCovidPhysio
#LongCovidAwarenessDay
#LongCovidAwarenessDay2024
#COVIDPersistente
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We are excited to announce our new team starting July 2023, including the executive board and committees.
#LongCOVID
(note: board liaison roles will be announced in July)
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What is disability? Has our understanding of disability changed over time? Check out our latest blog on
#LongCOVID
and
#Disability
by
@darrenabrown
to learn more about the history and understanding of disability
6
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We’ve got something to share!
We’re really excited to announce the Long COVID Physio International Forum
#LCPForum
@RMUoHP
@fisiocamera
@aboutKP
@HIVandRehab
@ekstokes
@PutrinoLab
Check it out now on our website
#LongCOVID
#FBLC
#GlobalPT
5
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132
#LongCOVID
has long told the story of the vascular nature of
#COVID
(thank you Lauren for your incredible art) [all images described in tweet or AltText]
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“The physical deconditioning theory does not explain the presence of persistent symptoms in patients who were affected by mild forms of the disease”
#LongCOVID
#GlobalPT
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New
#LongCOVIDPhysio
#blog
by
@OT_Skiff
"Bring It On" where Helen discusses her experiences of
#LongCOVID
crashes, pacing, acceptance, returning to work, boosters, and why we need to
#CountLongCOVID
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Wrong! Rehab won’t always result in “recovery” from
#LongCOVID
. We need better acknowledgment of the mechanistic causes of the underlying pathophysiology, to guide science and treatments. Rehab can help manage disability. It’s not a cure and recovery is not certain.
Excellent talks from
@lauramcw
and
@Tim_R_Nicholson
at
#FNDS2022
on FND & COVID-19!
Specifically, education of FND after vaccine (and the role of the media) as well as models of FND in the broader setting of Covid-19.
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Today is
#WorldPTDay
and
@WorldPhysio1951
have provided info sheets
#GlobalPT
👉 How to use
#Pacing
with your Physiotherapist
#LongCOVID
#CovidLong
#apresJ20
#COVIDLongue
#LangzeitCovid
#pitk
äcovid
#covidpersistente
#MitCoronaLeben
#koronaoire
#longhaulers
#l
ångtidscovid
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Today is
#MEAwarenessDay
. We are grateful to all the knowledge, lessons, and support from
#PwME
. Today is an opportunity to learn more and update knowledge so please follow
@MEAssociation
@PhysiosForME
@DoctorsWithME
@PTOT4MECFS
@StripyLightCIC
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Amyloid deposits identified in skeletal muscle of people with
#LongCOVID
and post exertional symptom exacerbation
#PESE
#PEM
Important for
#GlobalPT
to know of the emergent mechanisms of intolerance to exertion and exercise
Wonderful to see the
@RobWust
team at the
#KSLongCoVID24
symposium. They found amyloid deposits, identified by ThT in the muscle. Perhaps due to movement of the amyloid deposits via the damaged vasculature?
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We will continue to call it Long Covid, a name favored by people with living with a very real disease. It’s covering no new ground to also say that infection-associated conditions follow influenza and other illnesses. One does not delegitimize the other. Both are true.
Carry on.
Shame, shame, shame on
@guardian
for publishing such headline & on
#LongCovidAwarenessDay
of all days.
Study DID NOT find it’s time to stop using the term
#LongCovid
which shouldn’t be between quotation marks.
Ask yourself in whose interest this dismissal & stigmatisation is in.
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@WHO_Europe
#Rehabilitation
: self management of
#LongCOVID
for adolescents
👉 understanding post exertional symptom exacerbation (
#PESE
)
👉
#pacing
👉 managing daily activities
👉 education
👉 activity tracker
👏
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📣 Today we announce our inaugural
#LongCOVIDPhysio
Executive Board 📣 who are shaping our next stage of growth. They represent our membership, our culture, & our purpose. Meet our team including ppl living with & affected by
#LongCOVID
and allies
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We are pleased to see action addressing the inaccuracies perpetuated by this
@guardian
observer article. Thank you
@MEAssociation
for tackling this challenge and supporting people living with Long COVID
ME Association demands instant corrections to article that appeared in 'The Observer' today (29 November 2020):
Full text of our letter appears below.
#mecfs
#cfsme
#MyalgicE
#pwme
#TheObserver
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Booklet for ppl who had
#COVID19
(with or without +ve COVID-19 test) & have symptoms >4 weeks, including:
• adults
• young people
• children.
May also help:
• parents of children who had COVID-19
• family members, partners, friends & carers
#LongCOVID
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🚨Coming soon🚨
The 7th episode of our
#LongCOVID
Video Series on “Pacing”
@sunsopeningband
@OT_Skiff
@kirrabrean
@LindsaySkipper
@LisaAMcCorkell
@SammieFMc
@MichelleBull4
@julialmv
@CenterRes
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Today our vice chair
@DrMark_Faghy
representing Long COVID Physio, joined forces with
@LongCovidSOS
@long_covid
@LongCovidKids
to deliver a letter to the Prime Minister at 10 Downing Street requesting urgent investment for
#LongCOVID
Read more:
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#HappyNewYear
Do you want to learn about
#LongCOVID
?
Check out our video series in English
2
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Dr. Todd Davenport emphasizes the need for funding to pursue tests and cures for
#LongCovid
.
#LongCovidPhysio
#LongCovidAwarenessDay
#LongCovidAwarenessDay2024
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“…six months to a year from now, we’ll be reviewing the literature about talking about the long-term deleterious effects of non-hospitalized patients."
#LongCovid
#COVID19
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@dianaberrent
@Dakota_150
Hopefully you will listen to others responses
@dianaberrent
. We challenge this assumption you make, with our lived, clinical, academic, research, guideline and policy knowledge.
0
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The
#LongCOVID
Video Series has published 7 videos (1 more to come) & translated into 9 languages.
❓What impact have they had?
❓How do they help you?
❓What changes have they created?
We’d love to hear from you in comments👇
@fisiocamera
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“Scientists say they have detected irregularities in the blood of
#LongCOVID
patients that could one day pave the way for a test for the condition”
5
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Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#MECFS
for
#LongCOVID
: Postexertional Symptom Exacerbation
#PESE
is an Abnormal Response to Exercise/Activity
1
53
111
Yesterday in
#Chicago
@ACRMtweets
#ACRM2022
@LisaAMcCorkell
@darrenabrown
@KellyOBrien25
@Caregiving_UofT
@fofiConstant
presented on opportunities for international collaborations and capacity building in
#LongCOVID
and
#COVID19
rehabilitation research
11
22
110
New
@LongCOVIDPhysio
Video Series released tomorrow morning on the Impact of
#LongCOVID
on Day-to-Day Life
Watch this space 👀
3
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Very proud that part 1 of our
#LongCovidPhysio
#blog
is published in
@JOSPT
“Physiotherapists Living with
#LongCovid
: Defining the Indefinable”
#GlobalPT
Part 2 coming soon 🥰
@OnTapPhysio
@SusanWilliams__
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Today we begin the Long COVID Physio International Forum
#LCPForum
and we are excited to see you in 5 hours time when we open and welcome you
#LongCOVID
#FBLC
#GlobalPT
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Thank you to everybody who follows and supports
#LongCOVIDPhysio
… today we reached 13K
@Twitter
followers. Our
#LongCOVID
community is powerful, connected, and impactful. Together we make change. Thank you
#FBLC
2
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105
We are really proud to have been visibly recognised for our contributions in
#LongCOVID
by
@NICEComms
with our inclusion in the information for the public section of the NICE Long COVID updated guidelines
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🦠 What is Long COVID?
❓Why is it called Long COVID?
⚡️Common symptoms
🎢 Episodic nature
⚓️ Impact on day-to-day life
🛟 Safe rehab
⚖️ Pacing
All videos in our
#LongCOVID
video series👇
@fisiocamera
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Coming soon ⏰
“Safe
#LongCOVID
Rehabilitation”
The next episode in the Long COVID Video Series
Created with
@sunsopeningband
@SimonDecary
@KellyOBrien25
@darrenabrown
@LindsaySkipper
@fisiocamera
@DrMark_Faghy
@LauraTabacof
2
35
103
What is
#LongCOVID
? Today we release the first of our
#LongCOVIDPhysio
video series in partnership with
@fisiocamera
, where we describe what is Long COVID, including clinical definitions
#FBLC
. Thanks to
@La_Vavva
@darrenabrown
@ThePhysiFro
@LindsaySkipper
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Check out the video in full
#LongCOVID
common symptoms video on our website👇 including transcript (audio as text)
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Today has been a tough day on social media for many living with
#LongCOVID
#FBLC
… we are sending our love to all of you 💙. We value you, acknowledge your experiences, and celebrate your activism. Huge hugs to all in our community, and allies.
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#GlobalPT
#physio
are you seeing patients with
#LongCOVID
and orthostatic tachycardia after COVID-19?
Here’s a great
@bmj_latest
infographic on patient history, physical examination, investigations, diagnostic tests, and management
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#Pacing
can be difficult with
#LongCOVID
symptoms like exhaustion & brain fog ... we constantly update our website with reliable & accessible info ... including over 15 different pacing links
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36 million people across
@WHO_Europe
Region with
#LongCOVID
👉 that’s 1 in 30 Europeans in 3 years
👉 1 in 30 who still find it hard to return to normal life
👉 1 in 30 who could be suffering in silence, left behind as others move on from COVID-19
3
48
97
We began
#LongCOVIDPhysio
podcast as a way to share our
#LongCOVID
stories, & this has become more with community, clinicians, researchers, activities and allies. Our podcast has been downloaded more than 15,800 times across the world. Thank you to everybody for all you support.
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Persistent Exertional Intolerance after COVID-19: Insights from Invasive Cardiopulmonary Exercise Testing
#LongCOVID
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We strongly recommended that all Physiotherapists providing care for people living with
#LongCovid
use risk stratification before implementing any exercise as rehab. Exclude post-exertion malaise. Exclude potential cardiac symptoms. Listen to the patients story.
I will be referred to a physio who will help me build up my strength with ‘graded exercise’. I mentioned the change in
@NICEComms
guidelines and was told the physio would decide. They are already working with lots of people who need the same support. 🤬😭🤯.
@LongCovidPhysio
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We are immensely proud of our
#LongCOVIDPhysio
Disability & Rehabilitation Co-Director
@KellyOBrien25
and Chair
@darrenabrown
for being awarded
@CIHR_IRSC
research funding on
#LongCOVID
and
#EpisodicDisability
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#LongCOVID
representation on
@dragraceukbbc
with
@TheOnlyMayhem
sharing the need to modify their act to accommodate energy limitations
Cognitive dysfunction affects so many people living with Long COVID and it affects all parts of life.
Sending solidarity 💙
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In summary for “What is Safe Rehab in
#LongCovid
”
1.Screen for Red Flags
2.Know when to refer to OT
3.Listen and believe the patient
4.Symptom-titration is imperative
5.Regulation of body systems is key
6. Care should be individual and collaborative
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Our
#LongCovidPhysio
website was launched 4 weeks ago and has now exceeded >20,000 views. We are completely blown away by the response, feedback, and engagement. Thank you 🙏🏻 to everybody. We will continue to work with
#LongCovid
&
#GlobalPT
communities
1
42
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A collective response from
@longcovidkids
@longcovidscot
@longcovidsos
@long_covid
@longcovidphysio
following
@scotgovhealth
recent video update on NHS Inform Long Covid guidance.
To support our concerns please RT our statement with
#LongCovid
#LongCovidKids
#TreatLongCovid
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92
“…in the years to come COVID survivors may be among the new torch-bearers for disability rights. In fact, they may do for invisible disabilities what polio survivors did for physical disabilities.”
2
54
91
Are you living with an energy limiting complex chronic condition?
Do you use pacing as a way to manage?
Do you feel like you sometimes don’t get the balance right?
Check out our latest video on
#pacing
⚖️
#LongCOVID
#MECFS
#Fibro
New Episode of our
#LongCOVID
Video Series released today 💙
⚖️
#Pacing
⚖️
Click on link 👇 to watch video, listen to audio only, or read transcript (audio as text).
Thank you to all involved 🙏🏻💙
@fisiocamera
9
186
395
3
32
91
We wish
@LewisHamilton
well and hope he has some ease of symptoms soon. Hopefully
@MercedesAMGF1
permit you the
#StopRestPace
you need to recover
2
20
90
After 3 weeks of preparatory meetings for Long COVID Physio International Forum
#LCPForum
it’s wonderful to get a shot of work going on behind the scenes
#LongCOVID
#FBLC
@DocStrain
@doctorasadkhan
@Dysautonomia
@ARC_Mount_Sinai
@EmilyRichOT
@LindsaySkipper
@Dranjaliphysio2
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