Some of my long covid symptoms are quieter and I do not trust it

Started 17 June 2026 · 8 replies · 414 hearts · read 4.3k times

NadjaBelgrade, RS · 17 June 2026

1 month ago

Belgrade. Reads everything twice, trusts nothing once, and I am about to be very careful for four paragraphs.

I have had long covid since early 2022. The two symptoms that have shaped my life are the crashes and a low, constant, background inflammation feeling — sore, heavy, hot-skinned, worst in the evenings. I have been on this medication for eleven months for entirely separate reasons, which my doctor and I discussed properly, and which had nothing whatsoever to do with the long covid.

Since about February, the background feeling has been quieter. Not gone. Quieter, most days, in a way I noticed first because I stopped needing the cold flannel in the evenings and only worked out why a month later.

Now. I know what I want to conclude. I have read the same speculative articles everyone else has read, about inflammation and about whether these drugs do anything in this space, and I know perfectly well that there is nothing resembling a trial that would let me say what I want to say. I also know that in the same eleven months I have changed three other things, that it is now summer, that I have been pacing better since I found this circle, and that I badly want a story.

So my question is a discipline question, not a medical one. How do the careful people in here hold an improvement they cannot attribute? Because I catch myself telling people it is the medicine, and then correcting myself, and I would rather find a form of words that is honest and does not require me to pretend I have not noticed anything.

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SunilFacilitatorBirmingham, UK

Nadja, this is the best-posed question in the reading group’s general vicinity this year and I want to answer the discipline part properly.

The honest state of the evidence: there is a great deal of speculation about GLP-1 receptor agonists and inflammation, there are mechanistic arguments, and there is nothing I would call an answer for long covid. No adequate trial in this population that I am aware of. So anybody telling you it works, or that it cannot, is going beyond what exists.

The form of words I use for my own single-body observations is roughly: this got better while I was doing that. It sounds weak because it is weak, and it is accurate. It leaves the observation intact — you did notice something real, the flannel is real — without smuggling in a cause.

The other thing worth saying: your list of confounders is better than most published discussion sections. Three other changes, a season, and better pacing. Somebody who wanted the story would not have written that paragraph.

56me too 9

GilTel Aviv, IL

Tel Aviv. Reading the reading group papers twice, and I have exactly your problem in a different domain — my joints.

What helps me is separating what I do from what I claim. I am going to keep doing the thing that is working. I am not going to tell my cousin it is the cause. Those two are allowed to be different and I used to think that was dishonest, and it is the opposite.

44me too 7

TychoLeiden, NL

Leiden. Astronomer, long nights, odd meals. In my work we would say you have an interesting single observation with no control and several unmodelled variables, and we would write it down and wait.

Writing it down and waiting is a genuine scientific action, by the way. It is not the same as dismissing it. If enough people write down enough single observations, somebody eventually designs the study.

52me too 8

NikolaiSofia, BG

Sofia. Bulgarian access is patchy, persisting. I want to raise the uncomfortable side of this thread, since we are being careful.

There are people selling exactly this hope. I have seen it in three languages — pages implying these medicines treat long covid, aimed at people who are desperate and have been failed by every service they have tried. Every honest thread like this one is a small counterweight to that, and every careless one feeds it.

55me too 10

MimiHong Kong

Hong Kong. Access is fine, information is not, and this thread is why I stay on this site.

My symptoms have not changed at all in fourteen months. I mention it because a thread about an improvement should have somebody in it for whom nothing happened, or the next person along reads it as a pattern.

49me too 11

AbelAddis Ababa, ET

Addis Ababa. Rare here, reading and learning. Mine improved and then went back to where it was in the spring, which is a third shape nobody has mentioned.

I had four months of feeling I had found something. Losing it again was harder than never having had it, and I would gently say: hold it loosely, not because it is not real but because it may not stay.

51me too 12

PetuaKampala, UG

Kampala. Reading, learning, mostly listening — and coming out of the listening for one line.

Nadja, you asked how careful people hold an improvement they cannot attribute. I think you have just shown us. You noticed it, you enjoyed it, you refused to explain it, and you asked the room for a form of words instead of a confirmation.

53me too 9

NadjaBelgrade, RS

This got better while I was doing that. That is the sentence and I have said it out loud twice this week, once to my sister and once to a doctor, and both times it did the job without me feeling like a fraud in either direction.

Abel, thank you for the third shape. I have written that down as well. If it goes back in the autumn I will come and say so here, which I would not have thought to promise before reading your reply.

54me too 7

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