Phoenix Rising

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

[Phoenix Rising @aboutmecfs]

😲 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.https://t.co/CtvbAdpnnX

[Phoenix Rising @aboutmecfs]

🫤 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
https://t.co/pbYtVIDoG6

[Phoenix Rising @aboutmecfs]

👩‍🔬 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:
https://t.co/Gq2OAq1wM9

[Phoenix Rising @aboutmecfs]

🎆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."https://t.co/9X9xKXqu39

[Phoenix Rising @aboutmecfs]

🎆 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."
https://t.co/9X9xKX8TbB

[Phoenix Rising @aboutmecfs]

🎆 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..."https://t.co/9X9xKXqu39

[Phoenix Rising @aboutmecfs]

🤔 Confused about #autoimmunity in #MEcfs? You're not alone!

🗣️ We spoke with @C_Scheibenbogen to try to understand where the science currently stands...
https://t.co/HgUMsMED2L

[Phoenix Rising @aboutmecfs]

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:
https://t.co/vql4Eox0am

[Phoenix Rising @aboutmecfs]

@OmCatz @MEsufferer @tagaktiv_ @BhupeshPrusty Link to full documentary here:
https://t.co/uAMqNUcBgG

[Phoenix Rising @aboutmecfs]

@tagaktiv_ @BhupeshPrusty Summary of the few autopsy results thus far collected:
https://t.co/vql4Eox0am

[MEist @tagaktiv_]

@BhupeshPrusty Where might we be today with #MECFS research if we had looked at brain biopsies back in 1984?

[Phoenix Rising @aboutmecfs]

Y aquí hay una excelente perspectiva desde el sur:
https://t.co/qTbHuZ5o9t

[André Saravia @ssaraviaandre]

Hoy en @infobae @ValeriaRoman #LongCovidChile @longcovidlatam @longcovidchile

[Phoenix Rising @aboutmecfs]

🇲🇽 En México, los pacientes con #COVIDpersistente están espantados por la nueva realidad a la que se enfrentan.

🤔 Hablamos con @CovidComunidad para saber más.
https://t.co/XNFdjUQLPg

[Phoenix Rising @aboutmecfs]

He pensado que podría interesarte esto☝️@GTorreAmione
@AcpeCovid
@CovidVictimas
@longcovidlatam
@COVIDPERSISTEN2
@LongCovidMexico
@Pilar_RguezLedo

[Phoenix Rising @aboutmecfs]

@longcovidchile @peru_covid @CovidPersist_UY @Covid19persist2 @covidpersisarg @covideuskal @covidpersistecl @AIREyVIDA2021 ¡Por seguro! 👍
https://t.co/qTbHuYOl7t

[André Saravia @ssaraviaandre]

Hoy en @infobae @ValeriaRoman #LongCovidChile @longcovidlatam @longcovidchile

[Phoenix Rising @aboutmecfs]

🇲🇽 In Mexico, patients with #LongCOVID are shocked by the new reality they face.

🤔 We spoke with @CovidComunidad to learn more.
https://t.co/XAEHTxvVRY

[Phoenix Rising @aboutmecfs]

#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.https://t.co/CtvbAdpnnX

[Phoenix Rising @aboutmecfs]

He pensado que podría interesarle esto☝️
@JudithTaffur @frida0705 @drjorgerachid @chile_amigos @FibroEnAccion @FibromialgiaPu1 @AsofibRegion4 @KarimBianchi @chronic_rainbow @VidFibromialgia @alexandrarevolu

[Phoenix Rising @aboutmecfs]

🇲🇽 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.https://t.co/wtBEnZRxIB

[Phoenix Rising @aboutmecfs]

🇲🇽 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.
https://t.co/PDPgofvO6r