Phoenix Rising
@aboutmecfsA community for people with Myalgic Encephalomyelitis & related conditions. Fibromyalgia, Long Covid, Dysautonomia, EDS & MCAS all welcome!
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@CortJohnson
@DafoeWhitney
@BatemanHorne
@LBatemanMD
@OpenMedF
@PlzSolveCFS
@JanetDafoe
@DecodeMEstudy
@MEResearchUK
@MEActNetUK
@MEActNet
@TomKindlon
@davidtuller1
@benh_mecfs
@s4me_info
😲 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-enceph…
🫤 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/threads/a-boy-…
👩🔬 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-enceph…
🎆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-enceph…
🎆 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-enceph…
🎆 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-enceph…
🤔 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-enceph…
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/threads/autops…
Where might we be today with #MECFS research if we had looked at brain biopsies back in 1984?
🇲🇽 In Mexico, patients with #LongCOVID are shocked by the new reality they face. 🤔 We spoke with @CovidComunidad to learn more. phoenixrising.me/myalgic-enceph…
#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-enceph…
🇲🇽 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-enceph…
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Who to follow
-
Cort Johnson
@CortJohnson -
Whitney Dafoe
@DafoeWhitney -
Bateman Horne Center
@BatemanHorne -
Lucinda Bateman
@LBatemanMD -
Open Medicine Foundation
@OpenMedF -
Solve ME/CFS Initiative
@PlzSolveCFS -
Janet Dafoe
@JanetDafoe -
DecodeME the ME/CFS Study
@DecodeMEstudy -
ME Research UK
@MEResearchUK -
#MEAction Network UK
@MEActNetUK -
#MEAction Network
@MEActNet -
Tom Kindlon
@TomKindlon -
davidtuller
@davidtuller1 -
Ben H
@benh_mecfs -
Science for ME online forum
@s4me_info
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