USA Long Covid Action Project

mood

 

Yes. I think the equivalent of LCAP in ME/CFS, would be if a charity claims that ME/CFS is a disease caused by the mitochondria. And tries to lobby policymakers and researchers to abandon all other routes and only focus on the mitochondria. Going as far as to claim there is no point in researching all the other abnormalities in ME as they **must** be caused by the mitochondria.

A charity that fights against psychological or FND type portrayals of ME/CFS in that sense is much different.

 

I wish there was like a requirement of having to atleast read one major review of long covid, such as this wonderful piece:

Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2​

And to read some sort of essay that touches on ableism, chronic illness and acceptance. Before people start going online in long covid communities and preaching their “theories” on research like an aposle and insulting people for accepting they have a chronic illness.

I know I shouldn’t let this behaviour get on my nerves. But since I’m bedbound and unable to speak, most of my social contact is through these online communities…

 

Yeah this place here is really my safespace. Thank you all for all the effort you make in moderating and keeping it so

 

I’m a bit concerned with the Sick Time’s Rpeorting of Long Covid. They seem to be doing a decent job, but consistently mention LCAP in a positive light in their articles.

 

Also I calculated exactly what LCAP’s demand of 24 billion for LC at the NIH is equivalent to, and it is more than the yearly budget of the NIH
all cancers, all mental health diseases, all autoimmune diseases, all forms of dementia; AIDS, heart disease, and ALS put together.

Data can be found here:
https://report.nih.gov/funding/categorical-spending#/

 

There are two similarly named organizations, I think they're citing the legit one.

 

They also cited the “Longhauler Advocacy Project” in their recent coverage, but cited LCAP multiple times:

One letter by the advocacy group Long Covid Action Projectasking the NIH to consider corrections and retraction

the Long Covid Action Project (LCAP), has requested $28 billion in funding

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The Longhauler Advocacy Project is here. Board of Directors listed here.