Discover and read the best of Twitter Threads about #PESE
Most recents (16)
#WorldPhysio2023 following our #LongCOVID discussion session yesterday … here is a list of some useful resources that are freely available
1) @LongCOVIDPhysio Video Series - available in Arabic, Bangla, English, Mandarin & German
longcovid.physio/long-covid-vid…
1) @LongCOVIDPhysio Video Series - available in Arabic, Bangla, English, Mandarin & German
longcovid.physio/long-covid-vid…
3) @WorldPhysio1951 briefing paper on safe #LongCOVID rehabilitation - available in Bosnian, Bulgarian, English, French, Indonesian, Polish, Portuguese - Brazilian, Romanian, Spanish, Urdu and Vietnamese
longcovid.physio/our-work/world…
longcovid.physio/our-work/world…
1/ I don’t know which medic needs to hear this, but post-exertional malaise (#PEM) is NOT fatigue.
Short explanatory 🧵
#MedEd #MedTwitter #TeamGP #ME #LongCovid
Short explanatory 🧵
#MedEd #MedTwitter #TeamGP #ME #LongCovid
2/ Patients with #MyalgicEncephalomyelitis and approximately 50% of patients with #LongCovid experience Post-Exertional Malaise (#PEM), also called, Post-Exertional Symptom Exacerbation (#PESE)
🔴🆕
@apresJ20 publishes an informational page on #PEM post-exertional malaise or #PESE post-exertional symptom exacerbation:
👉to raise awareness of their essential identification in #LongCovid
👉and inform precautions to take in case of #PEM #PESE!
📌apresj20.fr/mpe
@apresJ20 publishes an informational page on #PEM post-exertional malaise or #PESE post-exertional symptom exacerbation:
👉to raise awareness of their essential identification in #LongCovid
👉and inform precautions to take in case of #PEM #PESE!
📌apresj20.fr/mpe
👉Many people (adults/kids) affected by Long Covid experience a disproportionate worsening of their symptoms after even mild physical and/or cognitive activity that might seem completely harmless to any healthy person.
👉It will then take them several hours, days, or even weeks to recover from this condition which can be very disabling.
It is important to learn how to regulate one's activities and physical and/or intellectual load to avoid the recurrence of these post-exertional ailments
It is important to learn how to regulate one's activities and physical and/or intellectual load to avoid the recurrence of these post-exertional ailments
Long COVID Physio International Forum #LCPForum recordings from Day 1 are now available 💙 🧵
#LCPForum Day 1 open and welcome with @darrenabrown @PTPintcast @ThePhysiFro & Dr Richard Nielsen @RMUoHP
🧵
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"
omt.org/wp-content/upl…
Conference website:
omt.org/me-cfs-long-co…
I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone
#MEcfs
1/
12-page report on "International Conference
ME/#CFS & #LongCOVID – Treatment & Rehabilitation"
omt.org/wp-content/upl…
Conference website:
omt.org/me-cfs-long-co…
I found the report good though I'd be surprised if some annoying stuff hadn't been said by someone
#MEcfs
1/
2/
"[As well as post-exertional malaise] other common symptoms of #LongCOVID & ME/#CFS include fatigue, cognitive difficulties, dysautonomia, reduced tolerance to physical +/or cognitive exertion, brain fog, unrefreshing sleep, pain & immune system symptoms"
#MEcfs #PostCovid
"[As well as post-exertional malaise] other common symptoms of #LongCOVID & ME/#CFS include fatigue, cognitive difficulties, dysautonomia, reduced tolerance to physical +/or cognitive exertion, brain fog, unrefreshing sleep, pain & immune system symptoms"
#MEcfs #PostCovid
Finally! New @WHO guideline specifies: NO EXERCISE THERAPY for #PostCovid patients if they suffer from POST-EXERTIONAL SYMPTOM EXACERBATION.
Hope this will protect more patients from becoming bedbound by wrongly applied #rehab measures like GET
Please RT
For more info see 🧵⬇️
Hope this will protect more patients from becoming bedbound by wrongly applied #rehab measures like GET
Please RT
For more info see 🧵⬇️
The new recommendations can be found in the WHO “Living Guideline for the clinical management of Covid-19” (publ. 09/15/22).
Link to the original document as PDF or via online platform here:
who.int/publications/i…
Excerpts in the thread (PEM/PESE mentions and highlights)
2/
Link to the original document as PDF or via online platform here:
who.int/publications/i…
Excerpts in the thread (PEM/PESE mentions and highlights)
2/
Jetzt warnt auch die @WHO explizit vor aktivierender #Reha bei #LongCovid , wenn #PEM bzw #PESE vorliegt!
Vielleicht hilft das, weitere #LC Patienten vor Bettlägerigkeit durch falsche Rehamaßnahmen zu schützen 🙏
Fachleute und Betroffene sollten das kennen!
Bitte RT
Ein 🧵
1/
Vielleicht hilft das, weitere #LC Patienten vor Bettlägerigkeit durch falsche Rehamaßnahmen zu schützen 🙏
Fachleute und Betroffene sollten das kennen!
Bitte RT
Ein 🧵
1/
Es handelt sich um die "Living Guideline der WHO zum Clinical Management of Covid-19" vom 15.09.22.
Hier findet sich das Gesamtdokument als PDF oder Online-Plattform.
who.int/publications/i…
Im Thread folgen noch Auszüge (PEM/PESE-Erwähnungen und besonders Relevantes).
2/
Hier findet sich das Gesamtdokument als PDF oder Online-Plattform.
who.int/publications/i…
Im Thread folgen noch Auszüge (PEM/PESE-Erwähnungen und besonders Relevantes).
2/
Really proud to have been a member of the @WHO Guideline Development Group for #LongCOVID Post-COVID Condition #Rehabilitation released today app.magicapp.org/#/guideline/64…
Topic 1: Components and functions of rehabilitation care #LongCOVID
Topic 2: Red flags for safe rehabilitation #LongCOVID
Buchberger et al. schreiben über #MECFS und wie soll ich es sagen? Ich bin müde. Und #MECFS habe ich außerdem.
Die Abhandlung fokussiert sich auf #Fatigue und schließt, "die Forschung zu Fatigue [dürfe] nicht nur viral bedingte Erkrankungen umfassen".
link.springer.com/article/10.100…
Die Abhandlung fokussiert sich auf #Fatigue und schließt, "die Forschung zu Fatigue [dürfe] nicht nur viral bedingte Erkrankungen umfassen".
link.springer.com/article/10.100…
"Zurück in die Zukunft!" möchte ich da sagen. Denn der Fokus auf das Symptom #Fatigue war gerade der Kardinalfehler, von dem sich die Forschung an #MECFS bis heute nicht erholt hat.
Charakteristisch für #MECFS ist das Symptom #PEM, nicht dagegen #Fatigue.
Charakteristisch für #MECFS ist das Symptom #PEM, nicht dagegen #Fatigue.
Diesen Umstand überspielt der Beitrag, indem an mehreren Stellen behauptet wird, auch Menschen mit krebsassoziierter Fatigue oder mit MS-Fatigue würden das Symptom #PEM aufweisen.
Wäre das Fall, wäre das sehr interessant. Allein: Belege werden dafür so gar keine geliefert (🤔).
Wäre das Fall, wäre das sehr interessant. Allein: Belege werden dafür so gar keine geliefert (🤔).
🧵 on repeat infections, negative lateral flow & #PCR tests, and the use of #COVID19 antibody tests. An n=1 experience #OmicronVariant #LongCovid #MedTwitter #TeamGP #psychtwitter #LongCovidKids #COVIDisAirborne #CovidIsNotOver 1/n
I had acute #COViD19 in Nov 2020, PCR +ve. Developed #LongCovid a month after. Had one dose #Pfizer Feb ‘21 which gave me new symptoms. Out of interest I had my anti-spike antibodies done May ‘21- they were above the upper limit the assay could measure 2/n
With the passage of time my antibodies dwindled. I had them rechecked in Dec 2021- both nucleocapsid & spike antibodies were below the protective limit. Therefore I had no protective antibodies. 3/n
Time for a 🧵 about metabolically-led post-exertional symptoms. This is quite possibly the most dangerously misunderstood piece of #LongCovid, #MECFS and infection-associated chronic illness puzzle (including non-viral pathologies that involve mitochondrial damage). (1/n)
First: many things can cause post-exertional symptoms, especially in the case of #LongCovid, where a large % of people have associated #dysautonomia. Understanding this is crucial to maximizing the utility of interventions such as autonomic rehabilitation and pacing (2/n)
without doing more harm than good. However, today is about metabolically-driven #PEM/#PESE. It should be fairly well-established at this point that many people with conditions like #LongCOVID and #MECFS have evidence of mitochondrial dysfunction, oxidative stress and (3/n)
🧵Serious Red Flags for the #CISCO21 #LongCovid Study
Researchers please listen to patients concerns & expand your knowledge to the history of #MECFS
You have a chance to stop patient harm
Researchers please listen to patients concerns & expand your knowledge to the history of #MECFS
You have a chance to stop patient harm
1. No mention of #PEM #PESE in the literature
After repeatedly asking if they screen for #PEM or take this into account - they have not responded in the affirmative.
This is the nub of the issue
75% of #Longhaulers have #PEM
46% are eligible for an #MECFS diagnosis
After repeatedly asking if they screen for #PEM or take this into account - they have not responded in the affirmative.
This is the nub of the issue
75% of #Longhaulers have #PEM
46% are eligible for an #MECFS diagnosis
This means that our bodies cannot process exercise - think sugar diabetes
There is no magic where by giving us exercise because we can't do it means we will magically be able too
There is no magic where by giving us exercise because we can't do it means we will magically be able too
A number of you have asked me how I did with #Paxlovid which I took for recent re-infection. Prior to re-infection, I was doing well on triple anticoags along with platelet/endothelial stabilisers (sertraline, rupatadine, rosuvastatin & a course of colchicine). 1/n
I was noticing an improvement in mobility, orthostatic symptoms & recovery time after #PESE. My re-infection was a clinical diagnosis based on symptoms & microscopy which showed multiple new microclots; I was negative on PCR & LFT, as many seem to be with the new strains 2/n
My physician prescribed a course of Paxlovid. Unfortunately I suffered severe orthostatic symptoms, fatigue, nausea & metallic taste. I managed to complete the course, & within 24 hrs side-effects disappeared & I was back to the previous baseline 3/n
Wer sich öffentlich - gar mit "Experten"-Status - über #Longcovid-Fälle äußert, die mind. z.T. #MECFS-Kriterien erfüllen, ohne aber den Bezug herzustellen, betreibt #Desinformation, in Teilen #Wissenschaftsleugnung, und schadet #Longcovid- & #MECFS-Patienten sowie allen Gesunden.
1⃣ #MECFS ist vernachlässigt und untererforscht. Dennoch gibt es eine Menge bewährter Erkenntnisse von renommierten und geachteten Experten zu Diagnostik & Management solcher Fälle.
Das darf #Longcovid-Betroffenen nicht vorenthalten werden!
mayoclinicproceedings.org/article/S0025-…
Das darf #Longcovid-Betroffenen nicht vorenthalten werden!
mayoclinicproceedings.org/article/S0025-…
2⃣ Das gilt insbesondere und vor allen anderen Dingen für das Kardinalsymptom von #MECFS, die sog. Post-Exertional Malaise (#PEM), auch #PESE genannt.
Wer #PEM ignoriert oder damit falsch umgeht, kann Betroffene irreparabel (lebenslänglich!) schädigen.
➡️cdc.gov/me-cfs/pdfs/in…
Wer #PEM ignoriert oder damit falsch umgeht, kann Betroffene irreparabel (lebenslänglich!) schädigen.
➡️cdc.gov/me-cfs/pdfs/in…
#WorldPTDay is amazingly busy on social media today, showing how much our #GlobalPT community cares about the needs of ppl living with & affected by #LongCOVID … so here’s a SUPER 🧵 of threads
1/n
1/n
#LongCOVIDPhysio formed in November 2020 and as a group we’ve achieved a lot in this time. So what have we been doing in the context of #LongCOVID? A thread 🧵 longcovid.physio
Firstly we provide loads of free resources with huge diversity of topics, including what is “#LongCOVID” longcovid.physio/longcovid
