@quella_the_dizzy_octopus: 🐙 #PostExertionalMalaise (#PEM ) does not mean what it sounds like. I.e. it is not reduced energy + symptom exacerbation after exerting/overexerting: This is a disability justice issue impacting those with #MyalgicEncephalomyelitis (#MECFS ). Comments will be monitored very carefully. Now to clarify, PEM does not DIRECTLY kill an MECFS patient every time. PEM acts as a systemic ‘poison’, that builds up damage in every body system over time. The mortality risk depends on the patient severity, length of the PEM episode, the current frequency of PEM episodes, and access to resources to support recovery from each PEM crash. PEM begins at 12h and peaks at 48-72h after the triggering exertion. It causes muscle necrosis (PMID 38177128; 39727052), blood vessel dysfunction that makes further exertion dangerous (PMID: 33671082), impaired oxygen consumption and low anaerobic threshold (PMID: 38965566; 24755065), impaired metabolism (PMID:35358096, ), impaired urinary excretion of metabolites (PMID: 36835097), cognitive dysfunction (PMID: 28216087), and immune system dysfunction with DNA changes to immune cells (PMID: 38232699). If pacing and resources to support PEM recovery is accessible, PEM crashes will be shorter, with less impact on the overall baseline. I.e. ‘PEM poison’ is cleared from the system and PEM induced damage is resolved before the next PEM episode is triggered. However, the average MECFS patient does not having adequate access to this - thus damage builds up towards life threatening crashes and complications. This is because the impact of intersectionality on MECFS is significant I.e. bad outcomes are over-represented In individuals who identify as black, brown, coloured, asian, latino, indigenous, LGBQTIA+, neurodiverse, low income, homeless, severe, very severe, and extremely severe. PMID: 41223774 ; 34065069 ; NCBI Books:NBK284897 .When compounded with systemic racism, ableism; a 71-year history of censorship, medical negligence, medical gaslighting and medical abuse; it translates to an INCREASE in death announcements from our community. 💙🕯️ This is because PEM indirectly DOES kill MECFS patients. #PostExertionalMalaise Credit: Research by Maya Lindemann and Quella. Video edit, post caption, and video description by Quella. Video Description: Quella is a Brown Asian female of Indian Descent who has severe MECFS . The video begins with images of Quella looking Sleepy and yawning. The lighting is bright. Quella is wearing her glasses and green pajamas with bright orange flowers on them. Her dark hair is neat. Her complexion appears warm with a touch of blush. This represents her not experiencing PEM. The text on the video says: “Post Exertional Malaise is NOT reduced energy levels and symptom exacerbation after exertion.” The images switch to very dark red lighting. You can just see the outline of Quella’s face glowing red. Quella is not wearing glasses. You cannot see her hair clearly. She appears very unwell. This represents her experience of PEM. The text on the video says “Post Exertional Malaise KILLS people with myalgic encephalomyelitis (M.E.C.F.S.).” “Read caption” This is the first of a series about and the current issue surrounding MECFS terminology hijacking in the chronic illness communities. In this first post we have purposefully made no mention of the new term post exertional neuroimmunological exhaustion (PENE) which is the only term interchangeable with PEM. It is imperative to note that PEM/PENE in a disease can only be determined by 2 day CPET testing. Other chronic illnesses that have not done 2 day CPET testing are not eligible to use the term PEM or PENE - even if they do experience flareup or crash symptoms after exerting/overexerting ( PMID: 21777306) .

Quella 🐙 ME & LC Educator 💙

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Tuesday 23 June 2026 07:32:16 GMT