These areas of research are less known, including metabolic profiling, antiviral response phenotypes, neuroimmunology, cerebral blood flow, mitochondrial fragmentation, viral persistence, hypermobility, craniocervical issues, altered T&B cells, metabolomics & proteomics, etc. 2/
These researchers have made astounding post-viral findings in the above areas. Everyone interested in #LongCOVID should stop treating this as an illness unlike any other and instead dive into the massive amount of research that has already been done. 3/
And #pwME and others who have been suffering with post-viral illness for literal decades are owned the same care, as well as justice for decades of truly horrific mistreatment. 4/
• • •
Missing some Tweet in this thread? You can try to
force a refresh
In a study of (mostly male) #LongCOVID patients in the military, those with lab-confirmed COVID diagnoses were 69% less likely to have anxiety/mood symptoms!
This supports the idea that LC patients w' false negatives have more anxiety bc they can't access the care they need. 1/
The study also found that a lack of lab-confirmed diagnosis led to a huge delay in #LongCOVID care: 8.5 weeks for those w' confirmation, 16 weeks (4 months!!) without.
Those without lab confirmation were also 63% more likely to have pain, likely because of lack of care. 2/
A thread on models for patient involvement in research! #LongCOVID
First up:
This paper on design strategies in citizen science highlights a scale of 5 levels of participation. From lowest to highest involvement (through a patient lens):
A) Contractual: members from the public (patients) ask scientists to conduct study; no direct involvement in the research process, apart from defining the problems & setting research priorities. 2/
B) Contributory: the lowest level of direct involvement consists of contributory projects, where patients assist academic scientists in data collection or processing according to neatly defined protocols (i.e. crowdsourcing).
3/
There are a lot of #LongCOVID gems in this webinar from HCA Healthcare UK. I'm going to try to tweet them succinctly:
1. Non-hospitalized COVID patients had a slower recovery than hospitalized patients.
2. At 12 months out, the majority of non-hospitalized #LongCOVID patients are still not back to work full time.
Next speaker is a cardiologist.
3. Cardiac MRIs are helpful. Even when they look normal from a functioning standpoint, supepicardial late gadolinium enhancement can be identified, showing post-viral myocarditis. (Screenshotted case was in a patient 200+ days out from onset).
The vagus nerve is a super important nerve (and is also the longest cranial nerve, running from the brainstem to the colon). Damage to it can impact many parts of the body (I find the decreased production of stomach acid interesting here) 2/
It can also cause a condition called gastroparesis, which may explain some #LongCovid symptoms 3/
from the CDC: "Clinical guidance is also informed by patient groups with whom we share the information" - that's @patientled and @itsbodypolitic!
from @NIHDirector - "11-15% of kids can end up with #LongCOVID, which can be devastating in terms of things like school performance. This is separate from MIS-C"
Antibody testing to diagnose #LongCOVID disenfranchises women!
1) Males are 4x more likely to retain antibodies 2) 36% of females lost antibodies by 3-6 months vs 8% males 3) 80% of those who lose antibodies are female 4) Men have higher antibody levels
Additionally, common COVID antibody tests, including Abbott, were validated against hospitalized patients & used too high a threshold. This results in 10-30% of "mild" infections accidentally being classified as negative: