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Dani
@DaniGrainga
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Long Covid for 2.5 years. Long distance runner. Make America healthy again #RFKJR #NicoleShanahan #ThomasMassie
Cape Cod
Joined July 2021
@SaraAna66550269 It’s really bad when the kind of care you get is so negligent that you’d actually be better off if you never sought any care at all. I remember waiting 9 months to see the rheum and them just being like “yeah not sure why you came here” it put me over the edge
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RT @DaniGrainga: Physically, I think I’m doing better than I give myself credit for. I just did a 10 mile run that felt pretty relaxing. I…
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@barrydorsey @allthatbazzz @AlbaDocherty @UCSFMedicine @HHSGov @Regeneron Ahh geeeez something new for me to hold out hope for…I hope rfk will make a meaningful impact for us 🙏
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@allthatbazzz @AlbaDocherty @barrydorsey @UCSFMedicine Oh yeah I did the gut biopsies too. For those that don’t know how it’s done, they stick a camera up your uhhh *place where you don’t want a camera* That’s interesting they shared with you about vp - they never shared any info with me about their findings. Did you have to ask?
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@barrydorsey @allthatbazzz @AlbaDocherty @UCSFMedicine @HHSGov @Regeneron What does that mean? That it’s on the market again?
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@SalvMattera Yeah the rheum referral really was just a referral to another part of Stanford med, but on the CFS/PACS clinic site, they advertise it as if its an actual clinic that exists in real life and has its own specialists. TRICKS!
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@allthatbazzz @Catinmyfamily Ugh it makes me feel sick imagining the disappointment of not responding to the infusion and kind of having a gut feeling you got the placebo, but at least holding on to hope that eventually you’ll get the drug as long as you stay the course but then not fucking getting it 🤬💔
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@Brie_FI @LCCampaign I mean they haven’t published the results yet. I’m just basing it off the fact that we’re 5 years in and despite the research, we’re no where near getting a treatment approved, but I have more confidence with this admin than the last.
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