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Long Haulers got Funding for the NIH: Understand This



We were called attention-seeking while we implored the public to listen to our pleas.


Hypochondriacs and psychologically unwell while our organs became damaged and we wanted desperately to prevent others from being in our shoes.


Liars for exerting every ounce of our free time and non-existent energy to volunteering months (and now over a year) of our lives to finding answers and help for the millions globally we feared were in our shoes.


And while this story is our past and present with #longcovid, it’s a story that’s been told for decades of #postviral illness, and for the billion (+) with #chronicillness globally.


Medical racism, sexism, elitism, and ableism (and not caring or knowing how to treat the dreaded chronic invisible illness), sweeping patients and their lives under the societal rug, all in the hopes of ignoring the problem away.


But this is the beginning of its end.


And while these guidelines aren’t perfect and more data will be generated from the research that we either worked hard to do ourselves or have worked hard to draw attention to (and still do!), it’s a start. And a start that’s been led by, advised by, and supported by patients. And while we didn’t write the guidelines, we were at the table to shape and review them, and will continue to do so because no one is yet an expert on #longcovid: except patients.


And the gratitude we feel for this occurring - patients (in rapid time) advising national policy to help other patients and hopefully enact positive change nationally (and globally, through our @who involvement) - is immense.


And while the CDC cites certain groups such as our @wearebodypolitic and @patientled as resources and references, it’s because of YOU - each patient sharing their story, despite the vulnerability that you’ve had to overcome - that has made this possible.


The community.


And although this is a small moment for us to rejoice over, there will be many more to come.


Because we are all the change. And each of your advocacy is propelling this vitally needed change in the right direction, for all.


Keep it up, my friends: as we await treatments for Long Covid, we are the first dose of the cure for ableism.