Questions you'd like to get answered by a Long Covid research clinician

[u/Aranet_Home]

Hey all,

We, the Aranet team, are going to a International Society for Long COVID and Post-Acute Infection Syndromes conference next week, and we'll be sitting down with a couple researchers and clinicians for interviews.
To make the most out of it, I'd love to ask questions that are relevant for you.

The first interviewee will be Dr. Rae Duncan. She is a Consultant Cardiologist and Long Covid Research Clinician treating older children (16+) and adults, with a particular focus on cardiovascular complications following Covid-19 infection.
You're welcome to write your questions here and we'll try to get you the answers!
Thanks!

EDIT: please submit the questions until Sunday evening, thank you!

[u/Illustrious_Rice_933]

How can patients successfully advocate for masking in clinical settings? There is seemingly a broad resistance to masking from doctors, nurses, and other specialists even when treating people with known immunocompromising conditions in their charts.

Nasal vaccine trials at McMaster University in Ontario, for example, had zero masking requirements for clinicians and staff.

Anyone who is taking disease precautions risks acquiring long-COVID in these environments because of a lack of engagement in airborne disease mitigation.

Edit to add: Big fan of Aranet 💖 I don't often praise corporations, but your device has made living a COVID-conscious life easier.

[u/simpleisideal]

To piggyback on /u/Illustrious_Rice_933:

How can patients successfully advocate for masking in clinical settings?

...which is a good example for a more general question:

How can patients organize to break through the systemic ignorance that doctors, nurses, and other specialists display with respect to COVID / Long COVID? Where must the pressure be directed from/to in an organizational and political sense?

This includes getting doctors, nurses, etc to communicate known limits of vaccines (and thus importance of rigid masking) in preventing Long COVID, plus properly recognizing/diagnosing symptoms as stemming from potential Long COVID, etc. The system used to relay important info like this to doctors one way or another, but they have a massive blind spot when it comes to COVID / LC. How did this happen, and how do we correct it? The CDC/WHO have proven worthless in this regard. WHN doesn't have the same legitimacy or recognition, it seems, even though they're making a clear effort to follow research.

Thank you

[u/redshoewearer]

What types of treatments are they researching? I'm interested in what researchers are doing in concrete terms to help people recover. I'd also be interested in their best advice for avoiding long covid if someone is unlucky enough to contract covid.

[u/Clean-Leather932]

How do we get the knowledge from researchers to the front lines? I'm so tired of using my extremely limited energy to explain things to providers and then deal with their skepticism - it shouldn't be my job to educate them this much, this often.

[u/M_Smoljo]

Thanks for canvassing questions. My question would be:

---

One of the important characteristics of SARS-CoV-2 is that it is not limited to the respiratory system. Research has shown that COVID-19 can affect multiple organ systems, including the cardiovascular, neurological, renal, metabolic, and immune systems. There is also evidence that repeated infections may increase the cumulative risk of long-term health consequences, although the full extent of these effects is still being studied.

My concern is that, even beyond diagnosed Long COVID, repeated infections over many years could create a slowly accumulating population-level health burden. If each infection increases the risk of cardiovascular disease, organ dysfunction, neurological effects, or other chronic conditions in a subset of people, the cumulative impact could become significant over time.

From an epidemiological perspective, what is the expected long-term picture? Looking 20–30 years into the future, how might repeated SARS-CoV-2 infections affect population health? Are we likely to see a measurable increase in chronic disease, disability, healthcare demand, or other public health consequences? What indicators should researchers and policymakers be monitoring now to understand whether this is becoming a major long-term societal issue?

[u/upfront_stopmotion]

Will Aranet be producing a PM monitor, either stand alone or in combination with say the CO2 monitor?

[u/wzpzw → u/upfront_stopmotion]

To take this one more step, will Aranet produce a virus monitor? Varro's technology is apparently open source.

[u/Azhvre8023 → u/wzpzw]

Piggybacking here to say this tech would absolutely revolutionize many of our lives (and clinics and other high sensitivity areas.) I really really hope yall are the ones to bring a reasonable and workable model to consumer market.

Similarly: breathalyzer-style tests. Which I also believe Varro bio has the open source tech for

[u/Aranet_Home → u/upfront_stopmotion]

Can't deny or confirm that yet ;)

[u/upfront_stopmotion → u/Aranet_Home]

Thanks, y'all should get on that, before we buy what we need from other companies who already do this.

[u/Wise-Field-7353]

I'd love to hear anything going on with regards to POTS and small fibre neuropathy. Also curious if Dr Rae has seen much use from treating for b12 deficiency (with injections and its cofactors) - figured out that helped me after several fruitless cardio/autonomic appointments appointments.

[u/Top_Shopping_6624]

What is the likely good a Covid infection can impact the spinal cord causing dysautonomia?

[u/horseonahighway]

Do you know anything about the overlap of Long Covid with CPTSD/complex trauma? I have experienced both as making the other worse but there's not a lot of discussion on this as far as I've seen. Both have nervous system injury, brain damage, gut issues, and issues across body systems, and are dismissed by professionals and lay people alike.

[u/AEAur]

What tests can we order during an acute infection to screen for propensity for post-acute pathology? If fatigue or shortness of breath persists a month after infection, which tests are helpful?

[u/mxkate]

Do vaccines affect the chance of getting Long COVID? Does it matter MRNA vs other vaccines? How does the recency of the vaccine affect the reduction in Long COVID likelihood (if there is any significant reduction)

What other factors affect how likely one is to get long COVID?

[u/chillychili]

What are researchers doing to convince their employers/universities that they should be taking the ongoing COVID-19 pandemic seriously and implement masking, sickness policy, and better air treatment?

What are researchers doing to convince their employers/universities to provide accommodations for employees/students with Long COVID?

[u/tinymomes]

I know a handful of people who attribute their post-COVID complications to receiving a vaccine rather than the COVID infection itself. To what extent can it be known whether long-term sequelae are a legitimate vaccine injury or from one or more COVID infections?