Workwell Foundation @4Workwell
#Nonprofit #research laboratory providing #disability evaluations, #education, and #resources for #MECFS, #LongCOVID, and other #fatigue related illnesses. workwellfoundation.org California, USA Joined May 2017-
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PACING WITH A HEART RATE MONITOR TO MINIMIZE POST-EXERTIONAL MALAISE. Learn how to use resting heart to lessen symptoms of #PEM in #MECFS and #LongCOVID. workwellfoundation.org/pacing-with-a-… #HRM #MillionsMissing #StopRestPace #StopGET @cazzachr @sunsopeningband @4WorkwellHealth @4Workwell
@NickyProctor @Bacme @4Workwell @sunsopeningband They don't need to start from scratch - am sure if they just contacted @4Workwell they'd say 'Sure, our stuff is online - feel free to refer patients to it!' Same with the MEAction Pacing Guide and probably the MEA leaflets library too. Why reinvent the wheel?
Practicing extra self-compassion today. Special shout-out to @remissionbiome @U2Fight_World @polybioRF @LCMoonshot @OpenMedF, the 'Unraveled Podcast' with @RuhoyMD and David Kaufman, @BatemanHorne @4Workwell @PlzSolveCFS and others who make the future look more promising.
@profmsharpe @findboundary @GeorgeMonbiot @ThosVarley Do you know there is now an objective marker for ME (PEM specifically) - a 2-day CPET developed by @4Workwell, also @DrMark_Faghy for Long Covid? As well as 4 blood-based diagnostic biomarkers in development, including one at Oxford Uni, led by @OxMEDiscovery?
When you’re depending on precise gas exchange data collected during a CPET (or two)—and, really, why wouldn’t you?—make sure the lab doing your CPET(s) is following a solid biological validation plan. Learn more in this @4Workwell blog. @4wwhealth workwellfoundation.org/understanding-…
What a wonderful summary of the dark history of psychologization of #MECFS by @jannamoen. Required background reading for anyone entering this research and clinical field. Thank you for this contribution, Dr. Moen, and for citing @4Workwell. H/T @RaviHVJ lcbreakdown.substack.com/p/how-federal-…
Great to see @SouthernHSCT including @4Workwell HRM resources “as a strategy to help avoid #PESE” #MyalgicEncephalomyelitis #LongCovid The charity has made their excellent resources more accessible with hard copies &attached intro note 👇 #PatientSafety hcsnisoutherntrust.pagetiger.com/cfxfrsn
I’m pleased to announce that I’ve been selected to represent physical therapists at this important interdisciplinary meeting on #LongCovid rehabilitation. Thank you for the chance to serve, @APTAtweets @RAHPT. #LongCovidAwarenessDay @4Workwell @4WorkwellHealth @LongCOVIDPhysio
I’m pleased to announce that I’ve been selected to represent physical therapists at this important interdisciplinary meeting on #LongCovid rehabilitation. Thank you for the chance to serve, @APTAtweets @RAHPT. #LongCovidAwarenessDay @4Workwell @4WorkwellHealth @LongCOVIDPhysio
We want those in industry to see that: 1) An objective marker for trials exists now (albeit needing to be done with a lot of care) - in the form of 2-day CPET, as per @4Workwell & @sunsopeningband 2) A remarkable set of biomarkers are on the way! And need commercialising.
We at @4Workwell and @4wwhealth stand with people who are trying to live despite #LongCovid on this #LongCovidAwarenessDay. COVID is far from over. Our times remain a historic mass-disabling event. To access our free resources, please visit our website at workwellfoundation.org.
On this #LongCovidAwarenessDay #LongCovidAwarenessDay2024, @LongCOVIDPhysio members are answering the questions the public is Googling. Check in throughout the day for short videos on frequently asked questions. We're posting to Twitter, TikTok, and LinkedIn. Instagram as we can.
I have no doubts that PEM often has an immediate component and that it can be terribly disabling. I just don’t think it’s the feature that most reliably differentiates people with ME vs people with other forms of fatigue, particularly in relatively mild cases.
I have no doubts that PEM often has an immediate component and that it can be terribly disabling. I just don’t think it’s the feature that most reliably differentiates people with ME vs people with other forms of fatigue, particularly in relatively mild cases. https://t.co/bA7FKX80D1
Our @4Workwell @4WorkwellHealth Rehab Clinician Small Group Meeting #2 is tomorrow night. Topic: Understanding PEM Symptoms, Diagnosis, and Clinical Measures.
#PEM/#PESE break many rules about how the body responds to activity, often leaving rehab clinicians helpless to help. Up your skills to assist people with #PEM/#PESE through regular small group mentoring. Starts January 2024. Space is limited. Join today! learn.wwhealth.co/offers/wmJzXJa…
They then did Cardiopulmonary exercise testing (CPET)... on 8 of the participants. 8?! EIGHT?! Ok... well, CPET testing is also already a done thing. @4Workwell have pretty much nailed that. So nothing particularly interesting there.
Special shout out to Professor @sunsopeningband from @4Workwell who has been tweeting out honest sincere scientific commentary and sincere tweets about the #NIH paper - which I find comforting as a #MECFS patient. Thanks for saying it straight.
@RaviHVJ No amount of funding is going to help if the researchers are woefully, and willfully, ignorant and incompetent. I have far more faith in institutions like @polybio, @4Workwell, @OpenMedF, and @BatemanHorne, and certain individual research teams.
@Michaeltikus @RorPreston @MECFSNanoneedle @4Workwell The original two-day CPET paper from @4Workwell comparing people with ME/CFS and deconditioned individuals is here. pubmed.ncbi.nlm.nih.gov/23813081/
Great meeting with @statwearable this morning! @4Workwell @4WorkwellHealth
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616 Followers 809 Following chronic illness, chronic pain, Autistic/ADHD. ME, POTS, EDS, Fibro, MCAS
Pam C @PammckC
897 Followers 722 Following Mom, wife, engineer, ice cream addict. Trying to focus on what I still can do versus what I can’t while sidelined with dysautonomia from Covid.
Jason Roy @mrjasonroy
1K Followers 783 Following CTO at CompareNetworks, music freak, basketball lover and cat weirdo. Working on building things that help scientists. #LongCovid headaches… always
Chris J. Maddison @cjmaddison
18K Followers 2K Following Asst. Prof. in Machine Learning at UofT and #LongCOVID patient.
Dr. Alice 💕 @calirunnerdoc
26K Followers 1K Following Cardiologist,Advocate,🏃🏼♀️,✍🏻,Posts≠medical advice. NO DMs for med advice,SARS-CoV-2=persistent vascular bomb💣.Views expressed are my own,not my employers.
D.Dave @D_Bone
12K Followers 252 Following Unapologetically Human. Wrong sometimes. Follow if you like no-nonsense honesty. Im not here for clicks. #AntiviralsNow #LongCovid
Rebekah Griffith PT, .. @RGriffithDPT
4K Followers 4K Following Physical Therapist passionate about Emergency PT, wellness, critical care, policy, education, and service. All views are my own. 2023 incoming.
Linds McAlonan McArth.. @mcalonanl
957 Followers 677 Following Cardiopulmonary PT• University of Kansas Alum • #PTtransforms. views are my own.
#APTACSM @APTAcsm
11K Followers 150 Following A national conference with programming designed by APTA's 18 specialty sections.Dear US, AUS and NZ #ME Orgs, We would like to invite you and your members to the world's largest #MEcfs and #longcovid conference on 15 May and 16 May. The conference, called #UniteToFight2024, will take place online and is open to all interested parties free of charge. Among…
@NickyProctor @Bacme @4Workwell @sunsopeningband They don't need to start from scratch - am sure if they just contacted @4Workwell they'd say 'Sure, our stuff is online - feel free to refer patients to it!' Same with the MEAction Pacing Guide and probably the MEA leaflets library too. Why reinvent the wheel?
How I wish @Bacme would take on board the wisdom of @4Workwell expert Prof Todd Davenport @sunsopeningband
Once you realize that PEM is a disease of energy limitation that comes with a limited capacity to respond to overloading, that leads to understanding the body also doesn't respond to well-meaning overload using exercise to stimulate physiological adaptation that may not happen.
Hey @AmmesAdmin @PlzSolveCFS @OpenMedF @MassMECFS @MEActionNC @MEActNNE @MEActMaryland @meactionga @meactionco @MEActionNet @polybioRF @CornellMECFS @BatemanHorne @4Workwell It would be great to have you involved in this online, 11am BST, 18th April. (3am PDT, 6am EDT)
PROTEST #SaveCarlasLife #ExposeMENow Carla is extremely ill in West Middlesex Hospital. Doctors are ignoring NICE guidance on severe ME & ignoring her severe POTS You know what to do THURS 18 APRIL 11am-1pm BST EVERYONE ONLINE USE THE HASHTAGS We'll be at the hospital too 1/
@CureLongCovid @bhanlon15 @EmoryRHYTHM @IghoID @MSMEDU @meactionga @4Workwell If RECOVER ever changes their minds about using (especially two-day) CPET, I know some people who can help. 😊
Practicing extra self-compassion today. Special shout-out to @remissionbiome @U2Fight_World @polybioRF @LCMoonshot @OpenMedF, the 'Unraveled Podcast' with @RuhoyMD and David Kaufman, @BatemanHorne @4Workwell @PlzSolveCFS and others who make the future look more promising.
@profmsharpe @findboundary @GeorgeMonbiot @ThosVarley @4Workwell @DrMark_Faghy @OxMEDiscovery If you would find a list of these biomarker projects for ME & Long Covid helpful, @wecrunchme have collated one here: crunchme.notion.site/5ab999027f5843…
@profmsharpe @findboundary @GeorgeMonbiot @ThosVarley Do you know there is now an objective marker for ME (PEM specifically) - a 2-day CPET developed by @4Workwell, also @DrMark_Faghy for Long Covid? As well as 4 blood-based diagnostic biomarkers in development, including one at Oxford Uni, led by @OxMEDiscovery?
@MscreStarHope Maybe @MEActNet @PlzSolveCFS @4Workwell @AmmesAdmin @JanetDafoe etc could send some info on #SevereME to the doctors or even someone to advocate for you now you're out of that house?
When you’re depending on precise gas exchange data collected during a CPET (or two)—and, really, why wouldn’t you?—make sure the lab doing your CPET(s) is following a solid biological validation plan. Learn more in this @4Workwell blog. @4wwhealth workwellfoundation.org/understanding-…
@sunsopeningband @4Workwell @4wwhealth Thank you.. wasn't sure whether my son picked up a virus or it was PEM. He has not had PEM for few months , before it would happen two days after the exertion..
@Jmiku4 @4Workwell @4wwhealth Yes. This is not unheard of.
@sunsopeningband @4Workwell @4wwhealth Could PEM come a week later after exertion?
@sunsopeningband @4Workwell @RaviHVJ High praise coming from you Todd, thank you for sharing and for your support ❤️
What a wonderful summary of the dark history of psychologization of #MECFS by @jannamoen. Required background reading for anyone entering this research and clinical field. Thank you for this contribution, Dr. Moen, and for citing @4Workwell. H/T @RaviHVJ lcbreakdown.substack.com/p/how-federal-…
Finally! We are live ! Now it’s your turn! ✅🚀 Our landing page is live and you can register yourself as a listener for #UniteToFight2024 - the biggest global online conference for #LongCovid and #MECFS. 18 hours, 2 days. 100% community-driven. But equally important is to…
Great to see @SouthernHSCT including @4Workwell HRM resources “as a strategy to help avoid #PESE” #MyalgicEncephalomyelitis #LongCovid The charity has made their excellent resources more accessible with hard copies &attached intro note 👇 #PatientSafety hcsnisoutherntrust.pagetiger.com/cfxfrsn
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