Body Politic: Open Letter to the NIH (re: NIH’s funding for research into Long COVID)

"We write to you on behalf of Body Politic – a grassroots health justice organization at the forefront of the patient-led movement for Long COVID – with regards to the NIH’s funding for research into Long COVID. We were thrilled to learn of the NIH’s plan to investigate Long COVID and other post-acute-Covid-19 sequelae via funded research. As leaders of one of the largest patient-led support groups for people living with Covid-19 – and “first-wavers” ourselves – we know how devastating it has been for Long COVID patients to suffer in isolation without hope of answers or care. The NIH’s announcement this winter provided that glimmer of hope for our community.

We are writing today to urge the NIH to prioritize funding projects that build on prior ME/CFS and related chronic illness research in their investigation of Long COVID. Long COVID patients share both symptoms and experiences with these patient populations, and we, as Long COVID patients and activists, have learned much from people with ME/CFS and related illnesses. It is also crucial to prioritize investigations that consider links between these conditions, as we are seeing Long COVID patients being diagnosed with ME/CFS, dysautonomia, and Mast Cell Activation Syndrome. "

https://www.wearebodypolitic.com/bodytype/2021/4/22/open-letter-to-nih

 

I have found it infuriating in some pieces/interviews about Long-covid (in the UK) where scientists/doctors are asked what do they think is causing it and they trot out some of the hard fought for ME research findings.
Of course they rarely acknowledge that these hypotheses are taken straight out of ME research but present them as 'new' findings into Long-covid.

 

It's worse when they propose hypotheses that should already be ruled out due to ME/CFS research.