Chandra Pasma Profile picture
Sep 11, 2020 20 tweets 7 min read Read on X
Journalists frequently ask me if my family is pursuing antibody testing to prove we had COVID. Draw up a chair and let me tell you why that question is so problematic.
#Longhaulers #LongCOVID #ApresJ150 #CovidAntibodies
2. A negative antibody test doesn’t necessarily mean you don’t have antibodies and it certainly doesn't mean you didn't have COVID. First of all, the accuracy of C19 antibody tests has been questioned by the CDC and others. Some C19 antibody tests have a high false negative rate.
3. For instance, some of the tests authorized by the FDA have a sensitivity rate under 90% - which means if 100 ppl are tested, 10 or more will be told they don’t have antibodies when they actually do. And that’s the rate reported by the manufacturer, not the rate in actual use.
4. What’s not widely understood though is that the sensitivity was not determined through clinical trials but by using specimens from known #COVID19 patients. In order to get blood samples from known COVID patients back in March and April,
5. most of the samples would have likely come from hospitalized patients. But what if patients who are not sick enough to be hospitalized don’t develop the same level of antibodies? We don’t know what the sensitivity rate is for patients with “mild” cases. ft.com/content/839bed…
6. Furthermore, a study from a consortium of California researchers found that much like PCR testing, the chance of getting a false negative seems to depend in part on the timing of the test: nature.com/articles/s4158….
7. (The same study found that false positives are an even bigger problem for antibody testing, including blood samples from 2018 testing positive for C19 antibodies.)
8. Several studies have shown that C19 antibodies appear to drop off quite quickly, as in 2-3 months after illness. I’ve been sick for 6 months. If I tested negative now, that doesn’t mean that 3 months ago, I wouldn’t have tested positive. cidrap.umn.edu/news-perspecti…
9. The likelihood of receiving a false negative also seems to depend on what type of test is used and whether it uses a finger prick or a blood draw, whether it’s a quick test or a lab test: bmj.com/content/369/bm….
10. In addition to the chance of a false negative, we know that not everyone who gets #COVID19 develops antibodies. In one Chinese study, 6% of people with confirmed COVID infections did not produce detectable levels of antibodies: businessinsider.com/study-recovere….
11. A Swedish study found that among family members who had been exposed to COVID due to the illness of at least one person in the family, family members who tested negative for antibodies still had SARS-CoV-2-specific T cells. cell.com/cell/pdf/S0092…
12. There is some anecdotal evidence to suggest that #Longhaulers are more likely to test negative for antibodies, although because it’s anecdotal, we don’t know why. Timing of tests, for instance? Detection levels? Or is this actually why we experience such prolonged symptoms?
13. And finally, there is also some question as to whether some of the most widely used COVID antibody tests are measuring the right antibody (the primary antibody the immune system uses to target the virus) or if they are measuring a secondary antibody: nytimes.com/2020/07/26/hea…
14. Based on all of this, I think an antibody test is of very limited diagnostic use. It might confirm that we had COVID; it certainly won’t confirm that we didn’t. I am, on the other hand, interested in what it might say from a medical research perspective.
15. If some of my family has antibodies and some don’t, does it correlate with symptoms, disease severity, or length of illness? Or is it random? If none of us have antibodies, could that be a potential explanation for our long illness?
16. And honestly, I’m not laying awake at night wondering if what we had was #C19. We got sick at the exact moment that a global pandemic was breaking out with many of the symptoms that accompany this illness, including some of the weirder ones; we had exposure to a known case;
17. And our long illness and slow recovery has followed the exact same pattern of thousands of people with confirmed COVID infections.
18. I mean sure, there’s always a small chance that it’s not COVID, but that’s kind of akin to saying that there’s a chance the Detroit Red Wings will win the Stanley Cup next year. It’s theoretically possible, but we all know it’s not going to happen.
19. If we need a positive test of some kind to be believed, that's a knowledge-gap problem, not a diagnostic problem. The solution to that problem is greater awareness, not a medical test.
20. Having said that, I once again offer up our bodies to science if anyone is legitimately interested in studying this issue. I'm happy to give blood if it's to contribute to research, rather than to combat #gaslighting.

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More from @ChandraPasma

Oct 4, 2020
I’m concerned about the growing tendency in some circles to equate #LongCovid with #MEcfs. I think this is bad for both #Longhaulers and ppl living with ME/CFS. A thread. 👇
2. Before I start, let me be clear this is not a swipe at the #MEcfs community which has been hugely supportive of #Longhaulers, sharing tips & resources & lots of moral support. I am very grateful for that support.
3. Nor is this to deny the reality that some #Longhaulers have developed or are on track to develop #MEcfs. We know from the first SARS that this could end up being a significant number of #COVID patients.
Read 26 tweets
Sep 21, 2020
1. This is a thread for my fellow #Longhaulers who are about to lose access to the #CERB on Saturday. I know some are quite worried about financial supports so this is a look at your options. As you'll see, it's quite a dog's breakfast. #COVID19 #LongCOVID #ApresJ180 #cdnpoli
2. The first stop is Employment Insurance Sickness Benefits. #EI eligibility was frozen in March, so if you were employed or self-employed but paying premiums and had accumulated enough hours for eligibility, you will now transition to EI sickness benefits.
3. It's not clear yet whether a medical note will be required if your illness is due to COVID-19. If it is, it can be signed by a doctor, psychologist, or chiropractor. You do not need a diagnosis to get a note (although you do need a sympathetic health care provider).
Read 17 tweets
Sep 16, 2020
Update Day 184: The Six Monthiversary of my onset of symptoms.

I'm happy to report that three of us are asymptomatic and Kid 3's cough is so sporadic that she's nearly asymptomatic.

#COVID19 #Longhaulers #LongCovid #ApresJ180 #CovidandKids
I will probably use asymptomatic for a long while rather than recovered, because as we've seen before, being symptom-free now doesn't mean they won't come back. I also remain paranoid about things like rashes & hugely swollen bug bites, although there's no reason to believe...
they're related to Covid. It will just take a while for the anxiety reflex to go away.

As for me, I'm having a really good week, including lengthy periods of the day where I have no symptoms at all and others where my only symptom is tinnitus.
Read 7 tweets
Aug 28, 2020
I spoke to @maywarren11 of the @TorontoStar about the need for better research and care for Cdn #Longhaulers. One of the most fascinating nuggets in this piece is the difficulty that the CANCOV study has had finding participants:
thestar.com/news/canada/20…
I'm part of three different forums with Cdn #Longhaulers, two of which have thousands of members. We all shared the information on the study as soon as we learned of it - and then we all shared the massive disappointment of discovering we could not participate.
Canada's massive screwup on testing back in the early days of the pandemic is still having an effect now on patients' ability to access medical care, sick leave and disability supports, and now its delaying the research into our condition.
Read 4 tweets
Aug 13, 2020
Update Day 150 (!!!!): This one's a bit of a mixed bag. Let me start with the good news. My husband and Kid 2 are asymptomatic and have been for a couple of weeks. Kid 2's energy is back and then some.
#COVID19 #CovidLonghaul #LongHauler #ApresJ120 #CovidandKids
Kid 1's only symptom is a swollen lymph node in her chest that has been stubbornly hanging on for weeks now. We took her to the osteo yesterday and by working on her neck and shoulder, the osteo managed to bring it down in size, but the bump still bothering Kid 1.
Kid 3 got a steroid inhaler four weeks ago. After a week of using it, she had 8 blissful cough-free days. Then the cough came back. We now seem to be in a holding pattern, with 2-3 days of coughing, followed by 2-3 days without. Still waiting on the respirologist.
Read 7 tweets
Aug 10, 2020
It's important that the conversation about re-opening schools and the plan to do so be based on actual facts, not magical thinking. The reality is that kids CAN get sick; kids DO get sick; and some kids get SERIOUSLY sick or remain sick for a LONG TIME. ctvnews.ca/health/parents…
In that respect, the comments of Dr. Anna Banerji in this article are deeply disappointing, verging on irresponsible. She says cases of kids with chronic symptoms are extremely rare. How does she know? What data is she pointing to? What surveys or tests have been done?
I remember back at the beginning of July when I did a radio interview & the doc who followed me on air also said that the vast majority of ppl who got COVID-19 recover in two weeks or less and that this issue of chronic symptoms was not really an issue.
Read 7 tweets

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