Sandra @RestlessSands

NON-VIOLENT PROTEST DURING A CONFERENCE ON #LongCovid. We are people living with Long Covid and we are sick. We want real care, not cognitive behavioral therapy or meditation. We need medications for our lungs, hearts, stomachs, immune systems, brains damaged by #Covid.

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Emerge Australia @EmergeAus

3 months ago

📢 Participants needed! The GLOW Trial is studying gut-based therapy for Long COVID at Uni Hospital Geelong. If you’re 18–65 with moderate–severe symptoms, you may be eligible. Learn more 👉 [email protected] | 📞 (03) 4215 3078

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Workwell Foundation @4Workwell

3 months ago

Introducing a New #Disability Service: A @NASA 10‑Minute Lean Test An evidence‑based assessment used to identify orthostatic intolerance — a common but often overlooked contributor to symptoms. Read More: conta.cc/4bnFjcN #MECFS #LongCOVID #Fibro #OI #POTS @sunsopeningband

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Sandra @RestlessSands

7 months ago

@renesugar @RenzPolster Myalgic Encephalomyelitis is NOT difficult to diagnose using the International Consensus Primer. We must challenge the narrative. A biomarker will make it faster, easier but we’ve had the ICP since 2011 and ability to diagnose quickly. It’s clinician Education that’s missing.

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Sandra @RestlessSands

7 months ago

@BrainInflCollab Precise diagnostic criteria. We need to uncouple chronic fatigue oriented criteria & discard mislabeling of CFS from Myalgic Encephalomyelitis ME. International Consensus Criteria ICC using the Primer ICP defines the distinct neurological features. Garbage In Garbage Out #GIGO

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Sandra @RestlessSands

8 months ago

@hopefullizzy That’s wonderful Lizzy! I hope the medical team are becoming more informed and treating you appropriately.

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Sandra @RestlessSands

8 months ago

Call for an action plan to cut Reef water pollution marineconservation.org.au/actions/reef-w…

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Sandra @RestlessSands

8 months ago

@hopefullizzy My pleasure Lizzy. I hope things improve for you.

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Sandra @RestlessSands

8 months ago

@hopefullizzy Here’s the educational material for your medical team batemanhornecenter.org/clinical-care-…

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Sandra @RestlessSands

8 months ago

@hopefullizzy Jeez… I’d put a sign above my bed that says educate yourself about ME before you communicate with me. 🤘🏼

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davidtuller @davidtuller1

8 months ago

Interview with Brian Hughes, professor of psychology at University of Galway, Ireland, about why the psychological/psychogenic view of ME, CFS, Long COVID, etc is so regressive and leaves people without medical care: youtube.com/watch?v=0K75eN…

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Sandra @RestlessSands

8 months ago

@stefan_arce Comprehensive symptom list aren’t seen often these days. Here’s one by hummingbird foundation that may be of interest to you. Wishing you improvement.

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Ror Preston @RorPreston

8 months ago

The 2024 survey from European ME Alliance shows just how disabling ME/CFS can be: 💙 54% are mostly housebound 💙 Nearly 1 in 5 are mostly or completely bedridden ME/CFS is far from 'just fatigue', but an immensely debilitating & serious multi-system disease, which demands far greater recognition & funding. #MECFS #LongCovid