@LittleSteps2BXtra How terrible! 😠

I'm so angry that any patient with ME, anywhere in the world, is being told to try graded exercise when there's no evidence it helps and there is evidence that it could make a patient worse.

For anyone who is new to this topic here is an 8 page summary document - from the Science for ME forum - about the issues with the PACE trial:

https://www.s4me.info/docs/PaceBriefing3.pdf

#MEcfs #MEAwareness #POTS #LongCovid #PostCovid #PEM

Guter Beitrag zur schädlichen Aktivierungstherapie bei ME/CFS und PCS (Post-Covid-Syndrom) mit PEM (Post-excertional Malaise), ein dunkles Kapitel der Medizin.
#PostCovid #pcs #mecfs #PEM

• Post-Covid-Behandlung und PEM - Auf Krücken rein, im Rollstuhl raus •
https://www.ardaudiothek.de/episode/zeitfragen-feature-deutschlandfunk-kultur/post-covid-behandlung-und-pem-auf-kruecken-rein-im-rollstuhl-raus/deutschlandfunk-kultur/94753510/

From: Bateman Horne Center
@BatemanHorne

Introducing video 6 of the Post-Exertional Malaise series, Neurobiological Changes

👉 View the entire PEM video series: http://bit.ly/3s4a3us

#PEM #PESE #MERC #MedicalEducation #MillionsMissing @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

@hosford42

This Pacing and Management Guide for ME/CFS (it also applies to many folks with Long Covid) might help. It has more info about PEM:

https://www.meaction.net/wp-content/uploads/2021/02/Pacing-and-Management-Guide-for-ME_CFS-9.pdf

I'm not always very articulate when trying to describe symptoms!

#MEcfs #LongCovid #PEM #MEAction

Irgendwie von Tag zu Tag existieren und nicht den Lebenswillen verlieren. Unsichtbar. Handlungsunfähig. Das ist kein Leben.

#mecfs #fibromyalgie #PEM

Nach meiner kleinen Exkursion am Freitag, mit Öffis Rezept holen, zur Apotheke, wieder 3 Tage fast nur geschlafen, gedämmert, Schmerzen. #PEM
Eben immerhin 2 Fenster geputzt u. ein Schränkchen abgestaubt, wieder k.o. Bis auf das Allernötigste bleibt alles auf Monate liegen. Kleinigkeiten, denken, lesen, quälend mühsam.
Die Frequenz der Crashs steigt.
Ich habe Angst, mich iwann nicht mehr versorgen zu können, ohne Hilfe, verarmt, vereinsamt.
#mecfs #fibromyalgie #IchBinArmutsbetroffen

Bateman Horne Center

In Video 5 of the post-exertional malaise [PEM] series, a study investigating the relationship between a resting state and post-exercise induced PEM shows significant increases in post-exercise ME/CFS brain activity, directly correlated with the number & magnitude of patient reported

https://www.youtube.com/watch?v=nn5W_XaIsUY

#PEM #PESE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #MERC #MedicalEducation #MillionsMissing #LongCOVID @mecfs

Bateman Horne Center ⁦‪@BatemanHorne‬⁩

Modified protocols of CPET testing have been utilized as tools for research, specifically to evaluate gene expression & immunological responses to an exercise challenge.

📽️series bit.ly/3s4a3us

#PEM #medicaleducation #MECFS @mecfs #myalgicencephaomyelitis #LongCOVID

That Stat News article didn't mention ME/CFS.

But I just noticed that one of the links in the first paragraph (on the word debilitating) goes to an article from January about a woman with Long Covid who also has an ME/CFS diagnosis:

‘I want people to see us’: A writer gives voice to long Covid and mothering from bed

https://www.statnews.com/2023/01/09/living-with-long-covid-writer-kristin-houlihan/

#LongCovid #MEcfs #POTS #Dysautonomia #PEM

10/
“Rehabilitation programs are often centered on reconditioning & exercising patients under the premise that patients are deconditioned due to illness or injury. But this premise that patients with ME/ #CFS have become deconditioned & increasing activity will restore health is inaccurate & misidentifies the root of the disease.People with #PEM / #PESE require specialized care & providers must screen for & identify who has & who does not have PEM/PESE”@longcovid @mecfs #mecfs

"Health risks can persist at least 2 years after COVID-19, new data suggest"

Important comment about study limitations in attached screenshot. It's sad but true that many doctors have never heard of PEM (post-exertional malaise, sometimes called post-exertional symptom exacerbation or PESE) and may not recognize it when a patient is relaying their medical history.

https://www.sciencenews.org/article/health-risks-persist-2-years-covid-19

#LongCovid #PwLC #MEcfs #PwME #PEM #ChronicIllness

"High proportions of post-exertional malaise and orthostatic intolerance in people living with #postCOVID19 condition: the PRIME post-COVID study"

Free fulltext:
https://www.medrxiv.org/content/10.1101/2023.08.17.23294204v1

"Exercise-based treatments can be harmful in people who were SARS-CoV-2 positive and
living with post-COVID-19 condition (PL-PCC) and who have #PostExertionalMalaise
(#PEM) or #orthostaticintolerance intolerance (#OI)"

#LongCovid #PwLC @longcovid @covid @covid19 #PostCovidSyndrome #postcovid #COVID19 #COVID

"Patients with #PostCovid-#MECFS reported persistently high severity of most symptoms up to 20 months after infection, while patients with PCS showed overall health improvement. Although #fatigue and post-exertional malaise (#PEM), hallmarks of post-infectious fatigue syndromes, were still evident in both groups, they remained more pronounced in PCS-ME/CFS."

#LongCovid #Covid19 #Corona #science

https://www.sciencedirect.com/science/article/pii/S2589537023003231?dgcid=author

“I Have ME/CFS or Long COVID; Where do I go from here?” Recent post from the Workwell Foundation

An informative introduction to ME and #longCOVID with emphasis on #PEM / #PESE, the importance of pacing and of avoiding graded exercise therapy.

https://workwellfoundation.org/i-have-me-cfs-or-long-covid-where-do-i-go-from-here/

#PwLC @longcovid @mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #PostCovid #PostExertionalMalaise

Es sind „nur“ 27°C.

Heute also das Beste aus beiden Welten. #ironie

Es ist zu warm für meinen Kreislauf und ich bekomme Wassereinlagerungen.

Es ist zu kühl um #PEM zu verhindern, was sich im Moment vor allem in krassen Nackenschmerzen, brennenden Muskeln und Reizbarkeit äußert.

I’m going to crash so haaaard nooo.

(Extra) Anticipatory pain is not fun.

Like that Dune guy putting his hand in the pain box. Oh by the way, you can take it out if you can’t handle the pain but you’ll die lol

#PEM #PwME
#ChronicPain

3/

“You might see someone who has PEM [post-exertional malaise] on a good day when they are trying to have a normal life. You’re not going to see them 2 days later when they're crashed & unable to move...that’s 1 of the forces that... hides the reality & scope of these conditions from public understanding."

@longcovid @mecfs #LongCovid #pwlc #pem #pese #pene #PostCovid #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME

Abgefahren.

Ich habe Kopfschmerzen, meine Hände sind kraftlos, ich schwitze extrem und meine Periode nervt.

Aber sonst ist keine #pem in Sicht. 😱

From Suzan Jackson:

Resources for Educating Doctors About #MECFS and #LongCOVID - includes links to 8 different resources you can share with any medical professional to help them learn more about ME/CFS, long-COVID, exertion intolerance (#PEM), diagnosis, treatments & more:

https://livewithcfs.blogspot.com/2023/08/resources-for-educating-doctors-about.html

@longcovid @longcovid #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME

Fühle mich walking-dead-mäßig und werde trotz ungewöhnlich viel Schlaf kaum wach. PEM und Fatigue halt 😒, war zu erwarten.
Letzte Nacht war ein krasses Gewitter mit Wolkenbruch. Die unerträgliche Schwüle wurde vorübergehend verscheucht. Ein sehr naher Donner hat mich total erschreckt.
Seltsamer Tag bisher, irgendwie surreal.
Wie der Berg Geschirr, der gleich fällig ist 😮‍💨.
Aber erst mal was essen.

Ach ja, und guten Morgen 🌞
möge es euch allen gut gehen 🤗

#mecfs #PEM #fibromyalgie