ME #pwME patient 10 yrs & mum of 2 with ME, #LongCovid & PANS • ME & LC Advocate • Co-Founder LCAI • Women's Health; Endometriosis,PMDD • Sci-fi & movie lover
Sep 30 • 4 tweets • 1 min read
Help needed
Looking for info for a #LongCovid patient who suffers from visual snow syndrome which began only after Covid (also has typical PEM/Fatigue type LC). She's been unable to find any LC patients with this issue.
Anyone out there have this/seen LC patients with it?
Pls RT
@long_covid @LongCovidAdvoc @LongCOVIDPhysio @DrMaireadDB @VickiMahony @BinitaKane @doctorasadkhan @TomKindlon @CiaraHendIRL @CiaraGlenville @gezmedinger @1goodtern @tigresseleanor @LiamQuaide @LCDLongCovidDub @ELHopkins @CounsellingSam @drclairetaylor @c_oreilly @LongCovidKids
Apr 22, 2023 • 5 tweets • 10 min read
Going to ask the obvious question & there's an obvious answer.
Why aren't majority of public #LongCovid clinics in #Ireland prescribing medications to manage patient's symptoms & improve quality of life? Uncontroversial meds eg low dose amytryptyline for pain, melatonin etc 🤔🤫
These meds have been used for a long time to manage these symptoms.GPs prescribe them every dy for these symptoms.Yet in a specialised clinic FOR LC, majority of ppl getting nothing
..could it be because some of those who'd be writing these scripts aren't convinced LCs physical?
Feb 11, 2023 • 8 tweets • 2 min read
Do ppl understand that ppl die from #MECFS?
Common cause is starvation as the stomach shuts down.
We're now seeing trend amongst #LongCovid patients; where many of those severely ill are seeing huge rapid weight loss. I'm begging parents to take action early if your child 1)
Has the signs of #LongCovidKids.
Majority of ppl who become severe do not start out that way. Rather they steadily decline.
Common cause of decline is pushing through PEM.This is why we talk about the importance of early diagnosis. Promise you as a parent if your child becomes 2)