Long COVID Physio Profile picture
Oct 25, 2021 15 tweets 9 min read Read on X
#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]
#LongCOVID #LongHaulers have talked of the vascular effects of #COVID since Spring 2020, when many felt first-hand the multi-system viral effects
#LongCOVID While #COVID enters the body through orifices & progreses you the kings, we now know that #COVID replicates in our cells, including our blood, thereby altering our bloods environment. This altering of our biochemistry impeded oxygen transfer to organs While #COVID enters the body through orifices & progreses yo
This is why #COVID is devastating to bodies, why it harms our blood béseles, & why an average If 9.1 body systems are effected in people living with #LongCOVID. This is also why listening to patients can advance medicine & help us all This is why #COVID is devastating to bodies, why it harms ou
Most recently, research is validating the vascular damage in #LongCOVID, with a recent study finding inflammatory micro-clots in sufferers, a potential cause of new illness (Not anxiety, trauma, attention-seeking, in our heads, or deconditioning)
In the study, inflammatory molecules contain clotting proteins (such as fibrinogen as well as alpha-2-antiplasmin) were found in the micro-clots. Alpha-2-antiplasmin prevents the breakdown if clots, while fibrinogen is the main clotting protein #LongCOVID In the study, inflammatory molecules contain clotting protei
But in #COVID patients, according to the study: “this implies that the plasmin & anti-plasmin balance may be central to pathologies in #LongCOVID and provides further evidence that #COVID19 and now Long COVID, have significant cardiovascular & clotting pathologies
This is why these headlines aren’t surprising to people living with #LongCOVID: we’ve known for over 19 months that #COVID is vascular & why age and prior health mean little in developing Long COVID. This is why these headlines aren’t surprising to people li
The vascular effects of #COVID & resultant multi-system organ damage had been felt & left untreated in #LongCOVID for almost 2 years. Standard imaging & blood tests do not show the extent of damage. This is also why 1st & 2nd wave patients were gaslit in our attempt to get help The vascular effects of #COVID & resultant multi-system orga
This is why we must listen to & believe those who have lived experience. This is why #LongCOVID is already a massive global crisis. If only we were believed sooner.
These links are important to better understand mechanisms:

👉 antihistamines have been suggested to treat Mast Cell Activation Syndrome #MCAS
medrxiv.org/content/10.110…

👉 mast cells are known for their pro-thrombotic mechanisms in Deep Vein Thrombosis bhf.org.uk/what-we-do/new…
We are not promoting any treatments and suggest you speak with your trusted healthcare provider. We highlight these to continue discussions of mechanistic hypothesis.

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More from @LongCOVIDPhysio

Aug 11, 2023
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

longcovid.physio/long-covid-vid…
@LindsaySkipper @sunsopeningband @julialmv @CenterRes @LisaAMcCorkell @OT_Skiff @kirrabrean @MichelleBull4 @SammieFMc

@4Workwell @scrippsresearch @DePaulU @patientled @PhysiosForME @LongCovidKids @visible_health

@fisiocamera
You can also access the entire #LongCOVID Video Series including translations 👇
longcovid.physio/long-covid-vid…
Read 9 tweets
May 9, 2023
🚨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.

longcovid.physio/long-covid-vid…
This video is part of the #LongCOVID Video Series

Check out more in thread below 🧵👇

longcovid.physio/long-covid-vid…
Read 9 tweets
Dec 28, 2022
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

longcovid.physio/long-covid-vid…
Thank you to the participants of Somerset #LongCOVID peer support group, who shared their stories of how Long COVID impacts their day-to-day lives, and Physiotherapist Liz Truman @NHSSomerset who supports the group.
This video received consultation by @LindsaySkipper @Occ4LifeLtd @MotherMRuss @PutrinoLab and peer review by @LongCOVIDPhysio executive board. Thank you to all who support these videos behind the scenes.
Read 14 tweets
Nov 1, 2022
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
Sep 9, 2022
What role does your identity have in your care?
@DrMarciaPT - if I wasn’t a PT in the system, I wouldn’t have understood how I was being seen and treated in the medical community.
@chiluvs1 I had to speak up for all those out there who didn’t have the ability to do so. What would happen if I stay quiet? Something I’m saying will create change for somebody.
@AshantiRN I thought I was immune to medical gaslighting as a nurse. My color and my sex trumped that. “Don’t gaslight yourself…don’t second guess your experience because a doctor told you so.”
Read 4 tweets
Sep 9, 2022
What does disability mean to you? @haziethompson - 1) The physical things that affect your ability and autonomy. 2) There’s the bigger scope used to exclude people from public life, a diminished capacity makes you unable to participate in society.
@chiluvs1 Disability means restricted access. Becoming a teacher gave access to healthcare, government, politics. I was accepted as a Black Woman. Then I learned as a disabled woman I had restricted access. Doctors restricted my care as a Black and disabled woman.
@ninachigbo in the African world, you are not allowed to say you can’t do something. As a Black Woman, mother, etc. you are expected care for other people. There is no acceptance for invisible illness. You must deal with it.
Read 6 tweets

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