RECOVER released a paper playing into gaslighting & myths of disability fraud, promoting misleading “scoring” prioritizing #LongCOVID symptoms less common in other conditions - like loss of taste/smell - over those most common in LC itself…
This is repeating bad history: many were harmed and even killed by an #AIDS definition that excluded symptoms common in women and drug users. Diagnostic gatekeeping weaponizes our medical records, fuels care and treatment restrictions, sets patients against one another…
We need biomarkers for #LongCOVID but remember they likely won’t be perfect and will also expose those who don’t fit the profile - biomarkers are tricky in many complex chronic conditions that present in such diverse ways….
Which brings us back to the importance of honest, humble reseach with community leadership and accountability. RECOVER leadership is throwing all of us under the bus in a rush to show Congress they can find results.
This RECOVER JAMA debacle must spur us to action…
… to hold NIH responsible and be a turning point in our relationship scientific powers-that-be. We repudiate toxic finger pointing among advocates - it’s just what those who benefit from LC minimization (pols, insurers, provider networks, COVID deniers, etc) want to happen.
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