Thread by @elisaperego78

I'm going through the "One Name Campaign" to "rebrand" and rename diseases like #LongCovid. I'm troubled from what I see: a "satirical documentary", attempts to "move this cause forward into pop culture"
At least 20 millions are estimated to have died from Covid. It's not "pop"

I have already expressed my concern, today and yesterday, about this attempt to rebrand "post viral and post trauma illness" into one basket, with the risk of minimizing suffering and delaying scientific progress. A thread I did today on the topic

https://twitter.com/elisaperego78/status/1687740636504461312?t=iWHANbo41PRrTDWjz1GK0w&s=19

I want to express further concerns about how this "campaign" is being "branded" and developed. Human suffering is not a "brand". References to "satirical" pieces, "pop culture", "adventures in the United States" (which lost more than 1 millions to Covid) are imo inappropriate

I strongly believe a more sobering and sensitive approach to chronic diseases would be necessary. The suffering of hundreds of millions of people should not be framed in my opinion within contexts such as "pop culture".

This is especially the case for a disease and its sequelae, Covid and #LongCovid, which have claimed millions of lives in one of the worst health crises in a century. The Covid-19 pandemic is also still ongoing, with people including children being infected, reinfected. And again

I am also personally disconcerted about these references to "satire", "adventures in the United States", and "pop culture" in relation to chronic diseases, like MECFS and fibromyalgia, that been characterized by abandonment, misdiagnosis, and severe suffering for generations

I am also concerned about this mention of the "need to rebranding" diseases that portrayd as "a bad brand", with this focus on patients as "weak, malingeres and hysterical". I don't feel represented here as a chronic patient myself. Patients are humans, powerful, strong, brave

As regards specifically #LongCovid, which is my area of expertise here (while I've myself multiple chronic diseases): Long Covid is not a "bad brand". Long Covid is a patient-made name and social-research movement which contributed to change history

sciencedirect.com/science/articl…

There is a salient power in the advocacy and patient-driven research that people in #LongCovid and other chronic disease communities have mobilized, often against all odds, to gain recognition for their disease. This is not something to "rebrand", erase

sciencedirect.com/science/articl…

This is the website for the One Name Campaign. I wonder also how it's funded. Or the team is working for free? Many in the disability and chronically ill space are advocating and doing science for free, including those who have no income at all

onenamecampaign.com/illness

@justanotheramy I also understand the organisation which is doing this campaign is heavily involved in the field, so it might be impactful at a high policy level. It's troubling. There are also other aspects but it would be quite long to address.

@justanotheramy Many people in the community were unaware of what was happening. It was a difficult choice to intervene. This material is upsetting imo and it took a lot of (unpaid) work while I am ill to go through this.

@wildswim There is much more in the website linked and in the video shared.

@PubliceProfugo @justanotheramy See the whole website. Conflating "post viral and post trauma illness" and failing to address the specific causes (e.g. virus) and manifestations of each disease (which would all be put into one basket) is troubling

onenamecampaign.com/illness

@itzelflora Of course, with medicine involved (the potential for financial profiteering and a career is immense) and with pandemic ongoing (which is a huge socioeconomic/political problem) there is the risk of interference from many "stakeholders"

@itzelflora Also, some parts involved are not real advocates and were not since the beginning; they just jumped on the #LongCovid bandwagon when it became popular and profitable. But I am ready to admit certain moments are very hard. People are dying with no medical help