By David Tuller, DrPH
*This is a crowdfunding month at Berkeley for Trial By Error. If you appreciate my work, here’s a link to donate (tax-deductible to US taxpayers) directly to the university: https://crowdfund.berkeley.edu/project/42302
**********
Marco Wetzel, a digital sales expert, is one of five German Long Covid patients who banded together earlier this year with an ambitious plan to produce a major online conference called UniteToFight. Although they faced some initial skepticism, they quickly rounded up some high-profile names as speakers for the free event, including Pulitzer-Prize winning journalist Ed Yong, Mt Sinai neuroscientist and rehabilitation director David Putrino, and Yale immunologist Akiko Iwasaki.
The conference takes place next week on Wednesday, May 15th and Thursday, May 16th. Three dozen or more presentations are planned—some pre-taped, some live (including mine). So far, more than 7,000 people have registered to attend. After the event, the organizers plan to make the presentations available for later online viewing. To help with costs, the group has crowdfunded about €12,000, said Wetzel, and they plan to donate any left-over funds to biomedical research. Wetzel, 37, has suffered from Long Covid symptoms for almost four years. We spoke earlier today about why and how he and his colleagues decided to organize this event.
The conference program looks very good indeed. Many thanks to the organizers and all those taking part.
I think it is easy to criticize the conference when we are not the ones organizing it- we all have various perspectives we would prefer advanced or completely disregarded because of the harm they cause.
I would have preferred a diagnostic biomarker focus for at least an entire day because a biomarker is what changed HIV and is what Michael J Fox has been chasing for 10 years. I think a stage to demonstrate to politicians, CEOs, et cetera the progress we are making on biomarkers is important.
I also would have chosen to decline all psychiatrists from taking part. There is a German documentary on ME/CFS that completely left out the psychiatric chokehold over our disease and went entirely biomedical- and it worked like a dream. It demonstrated the importance of discussing the message you want to get across (biomedical) and ignoring the harmful messages entirely.
I am in the make it testable, falsifiable, and objectively measure it camp.
I also know I did not organize the conference, and I realize it took enormous effort and expertise.
I think it has a great lineup and I hope this conference does unite us.
I’m extremely grateful to the 5 LongCovid patients who organized this conference.
Thank you so much.