A community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!
Joined February 2009
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😲 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…
🫤 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…
👩🔬 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…
🎆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…
🎆 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…
🎆 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…
🤔 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…
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…
🇲🇽 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…
He pensado que podría interesarte esto☝️@GTorreAmione
@AcpeCovid
@CovidVictimas
@longcovidlatam
@COVIDPERSISTEN2
@LongCovidMexico
@Pilar_RguezLedo
Y aquí hay una excelente perspectiva desde el sur:
xitter.cf/ssaraviaandre/status/1…
He pensado que podría interesarte esto☝️
@peru_covid
@CovidPersist_UY
@Covid19persist2
@covidpersisarg
@covideuskal
@covidpersistecl
@longcovidchile
@AIREyVIDA2021
🇲🇽 In Mexico, patients with #LongCOVID are shocked by the new reality they face.
🤔 We spoke with @CovidComunidad to learn more.
phoenixrising.me/myalgic-enc…
#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…
🇲🇽 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…
He pensado que podría interesarle esto☝️
@JudithTaffur @frida0705 @drjorgerachid @chile_amigos @FibroEnAccion @FibromialgiaPu1 @AsofibRegion4 @KarimBianchi @chronic_rainbow @VidFibromialgia @alexandrarevolu
🇲🇽 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…
He pensado que podría interesarle esto☝️
@mariafato @angelgargar @Mamassa6 @CentralZarate @Jessica89723899 @fibromialgialp @_LaMaximoK @ViejoLobo221 @sehacecamino68 @PiruElbey @pyedlin
🇲🇽"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…
He pensado que podría interesarle esto ☝️
@Disautonomiacl @DISAUTONOMIA @disautonomiamx_ @LymeMexico @BotHarmonie @ArturoErdely @pacruzalt @fibrosolidaria @sfcmadrid @MariaAPinero @CoespeOficial @NoInvisibles