der Rezepte ausstellt und Blutabnahmen vornimmt!
Bei den transportunfähigen Erwachsenen ebenso!
#ManErkläreEsUnsEltern #TatenStattWorte #SevereME #VerySevereME #MECFSimBundestag #LongCovidKids
Unendliches Leid
Eine kämpfende Mama mit schwer krankem Kind
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No difference in natural IGM levels between severe ME patients & Long Covid patients. 85% similarity between severe ME patients & all Long Covid patients & 81% similarity between all ME patients & all Long Covid patients. Natural IGM differentiates patients from controls...
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Severe ME/CFS and severe and mild long covid look similar in deficiency of natural IgM.
In all SARS2 patients the deficiency is so marked, that it is safer to bet on SARS2 being causative. But it could be herpes, Prusty says, since why do we see the same pattern in ME/CFS?
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IgM response to fibronectin: Severe ME/CFS has significantly lower amounts of it, people who have had it for a long time.
In long Covid, IgG and IgM response to fibronectin is low in all groups. Also in all infected! But less.
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Is this a issue elsewhere? I can’t be the only sick/disabled person living alone who find emails more accessible? #MECFS #SevereME #DisabilityTwitter #NEISvoid #SocialCare #Accessibility @NAScampaigns @actionforme @MEAssociation @NeuroAlliance @scope @RachelCDailey @DrFrancesRyan
At this point, I have very little hope. I, like so many others, have severe ME, & every symptom linked with it. Doctors continue to tell me I don’t have anything that will kill me. That’s what I was told yesterday by a cardiologist. I’m couch/bed bound. 🤷♀️🤦♀️
I am so grateful you are talking about this & that doctors and scientists are looking into this. I have severe ME. The question is how will this get to doctors who don’t even know what ME is. How will it translate to actual care for patients? We’re still left untreated.
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Discusses treatment for #SevereME.
Europe's first facility for severe #MECFS patients is non profit. LTC facility with 3 houses, each with capacity of 4 pts. Staff is Rn, OT, MD, Research, PT, Psychology, nutritionist and more.
Show this thread
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Thanks for excellent thread. Much appreciated. I’m reading about me for 40 years #severeME #MECFS #ME #CFS #postviralillness
#IIMEC15 Dr Bhupesh Prusty @BhupeshPrusty
Herpesvirus reactivation as a trigger for
mitochondrial dysfunction in ME/CFS
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How much does #MECFS and #LongCOVID overlap?
ME and LC, similar, but slightly more in LC (except vs severe ME)
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IgM separated into 3 different groups (severe, control, and mild #MECFS)
antibody against CRP very high in #MECFS
IgM response against fibronectin depleted in severe ME
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Absolutely. I'm really concerned that repeat Cvd infections will drive a big upswing in the number of ppl with moderate to severe ME - and most medics will have no idea how to treat them bc of decades of research & patient neglect.
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Question: has anyone looked at muscle in severe ME?
Answer: they are interested in nutrient uptake and production. They are looking at muscle and what microbial products might stimulate it.
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FMT and #MECFS - study by Thomas Borody
60 mild-severe ME/CFS patients, 52 with IBS
42 responded - improved sleep, fatigue, lethargy
picked particular microbes
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Another project by Katharine Seton - autoimmunity in severe ME - reactivity to their own gut microbes?
1. severe ME have lower levels of antibodies to foreign microbes
2. have increased antibody reactivity to specific gut bacteria
paper on pre-print
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Viruses in severe ME
In gut have bacteriophages (viruses that infection bacteria)
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#Respekt
Habe ich vor den Eltern die #MECFS #SevereME #VerySevereME Kinder pflegen!!!
Vor betroffenen Erwachsenen die ohne Familie die Erkrankung durchleben müssen!!!
Vor jedem Betroffenen!!!
Eine kämpfende Mama mit schwer krankem Kind
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