This is very true. The best way to do research for #LongCOVID is to learn from people who have been working in post-viral illness for literal decades.

Here is a list of these researchers to get you started:
docs.google.com/document/d/17q… 1/
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/

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More from @ahandvanish

31 May
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/
Read 8 tweets
27 May
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):

osf.io/preprints/soca… 1/ Image
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/
Read 11 tweets
21 May
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).
Read 47 tweets
9 May
Postviral vagal neuropathy (meaning a damaged vagus nerve) is found in some #LongCovid patients.

This can result in things like vocal cord dysfunction & can be the reason some patients have persistent shortness of breath but normal imaging:

online.anyflip.com/lpff/ryer/mobi… 1/
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/
Read 4 tweets
28 Apr
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"
Read 68 tweets
27 Apr
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

meddocsonline.org/annals-of-epid…
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:

bmcinfectdis.biomedcentral.com/articles/10.11… #LongCOVID
And overall, antibody tests are most sensitive on middle-aged men, especially patients between age 40-59:

jamanetwork.com/journals/jaman… #LongCovid
Read 4 tweets

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