There have been some really thoughtful comments since we shared our first #longCOVID rehabilitation paper on here and I wanted to take some time to transparently share 5 points about how our team has been tackling this complex and challenging problem - a thread (1/n)
1) Let's start with the "camp problem". Since the beginning we have noted the fact that #longCOVID shares similarities with #POTS, #dysautonomia, #CFSME, #MCAS, various #autoimmune conditions, et al. We are speaking with all of these communities and we are learning (2/n)
from some truly wonderful clinicians and patients, but we are not going to silo #longCOVID into just one of these conditions. In fact, as a group, our working hypothesis is that #longCOVID is unlikely to be one single is probably more like 5-10. (3/n)
If we don't mention some of these conditions in all of our discourse (or if we mention one but not the others), please understand that it is not because we're excluding the conditions, it is probably because there is a reason why we mentioned one that didn't broadly apply (4/n)
2) Unless there is a *really* good reason (which we will explain), we are always going to report on seronegative and seropositive #longCOVID patients. We realize that this will make our work harder to publish, but we will pre-publish it and share it all the same (5/n)
3) We will publish and share our findings quickly and "warts and all". We aren't interested in debating anybody about our findings, because, and this is important: WE DON'T TRUST THEM - we're rapidly communicating observations for the benefit of the #longCOVID community. (6/n)
Some of these findings will be false flags, others will not. This is how we do rapid, iterative discovery and we think it is the most helpful approach. We try to express all the caveats associated with our findings in what we share, but we aren't going to waste time arguing (7/n)
4) Our #longCOVID communications *will* have a rehabilitation bias. We are collaborating with some phenomenal interdisciplinary partners such as @VirusesImmunity and we will be co-authors in non-rehab papers because there will be no silver bullet that solves #longCOVID. (8/n)
However, our expertise is rehab. This is where we can offer the most knowledge to the teams that we work with. So, while our updates will have a rehab bias, please do not mistake that for us saying that rehab is the only approach. We read everything. So should you. (9/n)
5) Be kind. My team does not "do" #longCOVID work. They are an extraordinary team of individuals with extremely hectic non-COVID day jobs who are burning themselves out, unfunded on nights and weekends, to help a community in need. (10/n)
If we can't keep the discourse here civil, best believe that I will prioritize the health and safety of my people over sharing anything on twitter and we will go dark on this topic. We are all in this together and together is the only way we will get through 🙏✌️ (11/11)

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More from @PutrinoLab

7 Apr
#science is broken - a thread: since the pandemic began we have been at the forefront of advocacy and science for #LongCovid/#PASC. In Nov 2020, we submitted a novel dataset to @PLOSONE. Since then, they have held our manuscript hostage making us wait months between reviews (1/3)
today, we have withdrawn our manuscript from @PLOSONE because we refused to budge on reporting that many #LongCovid patients could also be PCR/antibody negative. Pressuring scientists not to count these patients will create disparities in health. It is unethical and foolish (2/3)
You can read our withdrawn manuscript on @medrxivpreprint (pinned tweet). In the meantime, we will not stop advocating for our patients and we will continue to report #LongCovid science in a way that is responsible, ethical and inclusive (3/3).
Read 6 tweets

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