Those of you who have read enough of my writing understand my only issue isnt with the Open Medicine Foundation, but also with the NIH, Walter Koroshetz, and Frances Collins, for doing nothing to help ME/CFS funding increase to a reasonable level.

The protestors in this video are doing what I have always thought is necessary, but have been too sick to do–civil disobedience directly at the NIH campus. Interrupting a meeting of Frances Collins and shouting about ME/CFS funding being ignored by him, is a good way to get his attention. One reason there isnt a lot of this type of protest, similar to AIDS activists militancy, is that people quickly become far too sick to travel and protest. But I think despite that, the only way we will make headway is by doing protests like this. we need to get allies to do it who are healthy, or more moderately ill patients.

Also, we need to publicize this far better. This only has 271 views on youtube. it was quickly forgotten. A media strategy that can court some controversy and have people outside the ME/CFS community wondering “why are those people so upset at the NIH/Frances Collins?” is neccessary. I’m not even being critical of MEAction in general. they have been more effective at protest organizing and communication than any other group I know of. I’m just saying it’s really too bad that more people havent seen this particular protest.

I hope that #longcovid patients take heed of what I’m saying, too. While I’m sure many of you are too sick to protest too, one problematic pattern that occasionally happens in the ME/CFS community is that people initially are in denial about how bad their disease is and don’t want to join advocacy or support organizations. Then by the time they get sick enough to get past this stage, they are often too sick to protest or do much to change their circumstances collectively. I’m not merely pointing fingers here, I can attest to this pattern because it is something that applies to me personally, as well as many other people I’ve seen.

So, its important to come to terms with your illness quickly, so that you can find a way to do something about it, whether its protest, research, or media and art of some kind.

My website doesn’t yet have a ton of views and isn’t high in search results yet. But I hope that this post in particular gets a few views, because this protest video should be seen by a lot of people as a template r future protests.

(SEO/tags: #longcovid, mcas, ME/CFS, protest, NIH protest, #notenough4ME, ACT UP, aids activism, MEAction, Frances Collins, ME/CFS is a living death, Body Politic, Long Covid activism, direct action)