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Y'all I'm pissed right now. 😡 Post covid pediatric clinic has no opening until February, I took my 7 year old son to a pediatric cardiologist. Tell me WHY Dr said she doesn't think he has #POTS, but thinks whatever the issue is, would be fixed by GRADED EXERCISE THERAPY! #MECFS
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New study: "At 3-6 mo. after mild/asymptomatic SARS-CoV-2 infection, virus-specific antibodies in saliva were substantially induced signifying a strong reactivation of latent viruses (EBV, HHV6 and HERV-K) ... #MECFS antibody responses were significantly stronger" #LongCovid 1/
FIGURE A: Comparison within each cohort (healthy donors vs ME/CFS) based on IgG, IgM, and IgA antibody response. Shows COVID-19 triggered reactivation of EBV, HHV6 and HERV-K both in ME/CFS and healthy donors, with more pronounced response in ME/CFS.
Only antibody responses with statistically significant differences are displayed on charts.
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I never imagined that at the age of 35 I would be fully disabled by the exhaustion and pain of #MEcfs. I was equally stunned by the discovery that others could, and often would, simply refuse to acknowledge the reality of my suffering. #MEAwarenessHour
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"my daughter died - the system does not work... we have a problem with the medical establishment, how at 27 you die from ME has to be answered" says Sarah Boothby whose daughter Maeve died of #MEcfs last year #MillionsMissing
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Phantastic work on the role of EBV reactivation in #MECFS ! - measuring viral activity in saliva instead of blood is key - EBNA1 stands out as a unique marker - activation of retroviruses (HERV-K) may be related to the altered HHV signature in ME/CFS
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There is an urban myth that patients with #MECFS benefit from secondary gains. Did you ever consider the negative side: isolation, lost social contacts, ruined career, ruined economy, severe symptoms around the clock—and deprecatory remarks about secondary gains! #MEAwarenessHour
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Woman who had #MECFS for 14 years is in longterm remission (5+ years) thanks to the chemotherapy she needed for breast cancer.
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We need more psychological research on #MECFS and #LongCovid! Research into why some people still believe it's ok to tell severely sick people that their medical condition is all in their heads.
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🚨 Although this needs to be replicated in a larger sample, the message is clear: Comparable orthostatic intolerance, abnormal cerebral blood flow and cardiac index reduction indicate that "#LongCovid is essentially the same disease as #MECFS."
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Following #pwME #MEcfs on twitter means constantly witnessing mass suffering which will break your heart as well as numerous accounts of the shocking & infuriating lies mismanagement & corruption from those responsible for caring for the sick which has been inflicted on #pwME 💔
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Heute vor einem Jahr war noch alles normal. Ich war zwar vorerkrankt, aber ich konnte mein Leben leben. Niemals hätte ich gedacht, das mein Leben einen Tag später so dramatisch ändern wird… Und das alles nur durch einen kleinen Pieks💉 #PostVac #Impfschaden #MECFS
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