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Phoenix Rising @aboutmecfs

A community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!

Joined February 2009
  • Tweets 3,695
  • Following 3,458
  • Followers 6,120
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Phoenix Rising@aboutmecfs
7 Dec 2022
😲 In case you missed it! 😲 #MEAwarenessHour 🇲🇽 In the first of a three-part series, people describe the challenges of living with #MEcfs or #fibromialgia in Mexico. 🧐We try to understand why the latest science is not informing proper medical treatment.phoenixrising.me/myalgic-enc…

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🫤 We all know the stigma of #MEcfs all too well. But it's not the only stigmatized neurological illness triggered by infection. 😯 Hear a story about a boy suffering from PANS (Pediatric Acute-onset Neurological Syndrome): #pans #pandas #panspandashour forums.phoenixrising.me/thre…

DISCUSSION: A Boy, His Brain, and a Decades-Long Medical Controversy

A Boy, His Brain, and a Decades-Long Medical Controversy No one could deny that Timothy was sick. But when doctors can’t agree on the cause of an illness, what happens to the patients trapped in...

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👩‍🔬 From the @CDCgov to @PlzSolveCFS to @BatemanHorne, @SuzanneDVernon has been trying to crack the case of #MEcfs for over 25 years. 🗣️ We spoke with her to learn more: phoenixrising.me/myalgic-enc…
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🎆Happy New Year (early) Lastly, Quote 3 from #MEcfs expert Dr. Komaroff: "Brain MRI has shown elevated levels of lactic acid consistent with oxidative stress... [Oxidative stress] may be a marker for […] inflammation in response to infection or injury."phoenixrising.me/myalgic-enc…
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🎆 Happy New Year (early) 🎆 We end this year with quotes from #MEcfs expert Dr. Komaroff: Quote 2 "If [neuroinflammation] were confirmed by multiple other investigators it would, for me, say there is a low-grade, chronic encephalitis in these patients." phoenixrising.me/myalgic-enc…
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🎆 Happy New Year (early) 🎆 We end this year with a few quotes from #MEcfs expert Dr. Komaroff: Quote 1 "I think most people in this field think that [...] the symptoms are caused primarily by brain abnormalities, that include [...] neuroinflammation..."phoenixrising.me/myalgic-enc…
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🤔 Confused about #autoimmunity in #MEcfs? You're not alone! 🗣️ We spoke with @C_Scheibenbogen to try to understand where the science currently stands... phoenixrising.me/myalgic-enc…

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Some scientific discoveries, unfortunately, are only possible by examining dead patients. There have been very few public autopsy reports on #MEcfs patients, but these few reports may reveal significant findings: forums.phoenixrising.me/thre…

DISCUSSION: Autopsy findings: Summary of discussions

I thought I would start a thread to summarize any and all autopsy findings from ME patients. Please feel free to share any relevant case reports, anecdotes, and studies. I'll start this thread...

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Phoenix Rising retweeted
MEist@tagaktiv_
7 Dec 2022
Replying to @BhupeshPrusty
Where might we be today with #MECFS research if we had looked at brain biopsies back in 1984?
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🇲🇽 En México, los pacientes con #COVIDpersistente están espantados por la nueva realidad a la que se enfrentan. 🤔 Hablamos con @CovidComunidad para saber más. phoenixrising.me/covid-persi…

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He pensado que podría interesarte esto☝️@GTorreAmione @AcpeCovid @CovidVictimas @longcovidlatam @COVIDPERSISTEN2 @LongCovidMexico @Pilar_RguezLedo
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Y aquí hay una excelente perspectiva desde el sur: x.com/ssaraviaandre/status/1…

André Saravia@ssaraviaandre
23 Nov 2022
Hoy en @infobae @ValeriaRoman #LongCovidChile @longcovidlatam @longcovidchile
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He pensado que podría interesarte esto☝️ @peru_covid @CovidPersist_UY @Covid19persist2 @covidpersisarg @covideuskal @covidpersistecl @longcovidchile @AIREyVIDA2021
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🇲🇽 In Mexico, patients with #LongCOVID are shocked by the new reality they face. 🤔 We spoke with @CovidComunidad to learn more. phoenixrising.me/myalgic-enc…
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#MEAwarenessHour 🇲🇽 In the first of a three-part series, people describe the challenges of living with #MEcfs or #fibromialgia in Mexico. 🤔 The science is discussed, & we try to understand why the latest science is not informing proper medical treatment.phoenixrising.me/myalgic-enc…
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🇲🇽 En la segunda de una serie de tres partes, se describen los retos de buscar derechos fundamentales para los pacientes con enfermedades neuroinmunes en México. 🤔En concreto, analizamos el profundo reto que supone ser paciente y defensor al mismo tiempo.phoenixrising.me/mexico-defe…

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He pensado que podría interesarle esto☝️ @JudithTaffur @frida0705 @drjorgerachid @chile_amigos @FibroEnAccion @FibromialgiaPu1 @AsofibRegion4 @KarimBianchi @chronic_rainbow @VidFibromialgia @alexandrarevolu
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🇲🇽 In the last of a three-part series, people with neuroimmune diseases in Mexico speak up about the wide-ranging consequences of the disease on their life. 🤔 Common themes include exercise, gender bias, and domestic abuse. phoenixrising.me/myalgic-enc…

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He pensado que podría interesarle esto☝️ @mariafato @angelgargar @Mamassa6 @CentralZarate @Jessica89723899 @fibromialgialp @_LaMaximoK @ViejoLobo221 @sehacecamino68 @PiruElbey @pyedlin
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🇲🇽"En la primera de una serie de tres partes, las personas describen los desafíos de vivir con enfermedades neuroinmunes en México. Se discute la ciencia, y por qué la ciencia más reciente no está informando el tratamiento médico adecuado en México." phoenixrising.me/mexico-em-s…

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He pensado que podría interesarle esto ☝️ @Disautonomiacl @DISAUTONOMIA @disautonomiamx_ @LymeMexico @BotHarmonie @ArturoErdely @pacruzalt @fibrosolidaria @sfcmadrid @MariaAPinero @CoespeOficial @NoInvisibles
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