Since the "I'm recovered, but..." variant of #LongCovid seemed to resonate here, let me share the next part of my personal thought process on this: we need a metric in medicine for how much effort someone has to put into feeling ok. So many people feel "conditionally ok" (1/n)
"I can feel ok so long as I do x, y and z religiously, otherwise my health gets really bad" - this is often not viewed as pathology, and this is a trap that many #LongCovid patients may fall into - fine so long as they put an incredible amount of effort into their health (2/n)
This is why historically excluded groups and people living near the poverty line will be disproportionately affected by #LongCovid: the amount of time and effort required to stay healthy will not be compatible with the lifestyles of many, leading to worsening disability (3/n)
while simultaneously experiencing a progressive retraction of health services (because they're "fine"). Creating a framework that quantifies the amount of time and effort that goes into a person maintaining an acceptable level of subjective wellness seems like a logical (4/n)
next step for adding some nuance to the very binary "sick" or "not sick" clinical world that we live in today, especially when it comes to chronic illness. Obviously shame on me if this already exists, but I looked pretty hard and didn't find anything. #SundayThoughts (end)
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I feel like the #LongCovid community has experienced a weekend of intense reflection and self-effacing conversation (because of *that* @NewYorker article) about what it means to be an ally and advocate. Phenomenal content from @itsbodypolitic and others on what it means to (1/n)
be a patient-led advocate and ally, so I wanted to start a thread on what it means to be a clinical and research ally for #LongCovid. @DhruvKhullar's @NewYorker article was bad. In the face of backlash, he tried to explain that the piece was intended as a call to action (2/n)
for #LongCovid. The LC community disagreed. Resoundingly. If we take @DhruvKhullar at his word - he was genuinely trying to help - how then, did his piece miss the mark so badly, and what lessons can us as clinicians learn about how to be an ally and advocate to patients? (3/n)
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 condition...it is probably more like 5-10. (3/n)
#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).