I will start by saying the *published* evidence is limited. Therefore going off published evidence alone is (by definition) incomplete (same for any research: the active researchers have a knowledge advantage)
1. This was first reported in the mainstream in Jan 2022 by Science mag: science.org/content/articl…
Importantly, there are a handful of such cases in the trials that were excluded from final analysis, one is described in the Science article
2. Case studies showing long covid pathologies post-vaccination have been reported, including one case series from a NIH researcher: medrxiv.org/content/10.110…
4. Jacob Laubscher (South Africa) & @BeateJaegerMD (Germany) have seen the same hypercoagulation in patients with post covid vac syndrome as #longcovid patients (currently unpublished but discussed briefly here & here )
5. Patients in countries/areas that were covid zero, like New Zealand, have reported having long covid like presentations post vaccination. Research is ongoing, but the observation is mentioned in this paper: frontiersin.org/articles/10.33…
With one study showing a higher antibody response to vaccination correlated with symptom worsening: pubmed.ncbi.nlm.nih.gov/35238053/
If we can believe patients can get worse from vaccination, is it not reasonable to think some people get ill from vaccination? It is an immune stimulus after all
8. @brucep13's group showed lingering spike protein in immune cells in long covid patients but not recovered controls. He then found similar in post covid vaccine syndrome patients researchsquare.com/article/rs-184…
9. Such presentations dont appear to be new to covid vaccines, for example there are reported cases of POTS post-HPV vaccination, eg link.springer.com/article/10.100…
Such cases often get ignored due to intuitive bias that precludes critical thought ("antivax" "correlation ≠ causation"), and because we dont see population risk increases (a lack of which does not preclude causality) bmj.com/content/376/bm…
Indeed, for illnesses with sometimes relatively low population prevalence that are often misdiagnosed, or missed completely, biomedical research is a much stronger method to infer causality. Which leads me to...
10. Upcoming biomedical research:
• @resiapretorius has a SA MRC grant to look at #microclots, discussed briefly here:
• Researchers in the UK won a grant to also look at microclotting
Based on the current *published* evidence we cannot infer strongly that post covid vaccine syndrome is "real" (i.e. causally from the vaccine). However, those who are actively treating patients (i.e. those who have seen most data) and doing the research seem to have little doubt
As it stands, many cases do adequately meet "standards" to infer causality. Those who doubt this seem to be those who are not actively involved in the research or clinical care of patients; ime they are often unaware of the ongoing research too
Will some cases be a coincidence or caused by something else? Most likely YES. But that is true for anything. Long covid, lung cancer in a smoker, back ache in someone with bad posture etc. We shouldnt use that line of reasoning to dismiss the possibility.
Dismissing possibilities stagnates progress.
Until the biomed work has been published we cannot make absolute statements that these patients are not suffering from vaccine harms. Especially if an alternative explanation is given that is based on no evidence like "must have been infection" (dontbelievehype.co.uk/covid-%26-vacc…).
Patients are telling THEIR truth. And believe me, they wish it wasnt their truth. Those who know they had infection are often the first to say. We think about this 24/7, we're open to explanations. We'd rather it wasnt the vax, esp as vaccines are the only COVID mitigation atm
If you are in doubt, what evidence would change your mind? Let us know, and hopefully we can consider this in research. We want to know the truth, we might be wrong. But so might you.
for clarity: we are building a clinical picture here, not giving absolutes
Post script: if you can believe some ME / long covid patients get better post vaccine (which surveys suggest does happen, more often than getting worse), but you cannot believe others get worse, then i think you need to consider why that is & whether youre being consistent
Resrarchers in Germany suspect autoimmunity, though i cant find a research publication on this so take with a pinch of salt (or link me if ive missed it!) deutschlandfunk.de/post-vac-neu-e…
Something underappreciated with chronic illness is the amount of things constantly going on *even on better days*.
For example, on a lower symptom day, having a conversation can mean:
🦵🏻 My legs start tingling and internally vibrating
🙌🏻 The numbness in my hands gets worse
🧵
👂🏻 Pulsatile tinnitus gets worse
🫁 Breathing becomes harder
💓 My heart beats faster and i can often feel palpitations
🤢 Nausea kicks up a notch
😵💫 Dizziness gets worse
💪🏻 My muscles twitch and sometimes spasm
👋🏻 I might start tremoring
😨 My energy drains and fatigue sets in
🤯 My head feels "full" (I don't know how to describe this sensation)
👀 It becomes harder to focus my eyes
🗣️ I'm fighting to stop my speech becoming slower and/or quieter
🤔 My concentration and "present-ness" fades
Im glad to see more doctors speak about things like #MECFS #POTS #MCAS #fibromyalgia etc but it also worries me because its seems many have a rather superficial understanding. For example, i quite often hear such doctors speak about MCAS only in terms of histamine
#medtwitter
They talk about the more obvious histamine related symptoms like hives. I heard one dr say one of the "most common" symptoms is dermatographia (skin writing) and im really not sure thats the case (both our samples may be biased though)
Treatments are (as far as I've seen) exclusively spoken about as trigger avoidance and antihistamines.
Similarly ME is described as chronic fatigue (not PEM), and POTS is described as dizziness and fainting
It's #LongCovidAwarenessDay2025 and these are the messages i want different groups to understand:
Medical professionals:
Our best healthcare teams dont have all the answers, nor do they pretend to. Instead, they read the evidence, they listen, they believe, they monitor 🧵
They take risks (with informed consent), they keep accurate notes, they advocate, they wear respirators, they accommodate (e.g. low lighting, allowing us to lie down, or have online appointments and home tests), they care.
Medical professionals (again):
Long COVID is not a complete mystery. The GMC state that you need to work according to best evidence. This requires you to read the evidence and listen to experts. If you did this, you'd know to rule in/out the most obvious at the very least:
Clearly things DO need improving otherwise we wouldnt have the need for a vaccine injury charity to be set up to support patients with vaccine injuries.
We wouldnt be waiting for basic tests/diagnoses, we wouldnt be censored, and we wouldnt be battling VDPS
Some jumbled notes from Evans:
Kept talking about gold standard evidence without appreciating where we can actually do better. Research methods is a dynamic field, the gold standard of today is the poor practice of tomorrow
Had an appointment with my best dr today. The only dr i fully 100 % trust. Some points for #medtwitter:
1. I trust him because he believes me, first and foremost
2. He knows i struggle being upright and with light so he turns the lights down & preps a couch for me to lie on
3. He knows i am clinically vulnerable so wears a respirator, and if med students/whoever are observing, he gets them to mask up too. Also has the window cracked for ventilation
4. Even though i see him for very specific things, he provides space for me to talk through how EVERYTHING has been since we last spoke. He writes up any symptom changes in my notes so its an accurate record. This is important as it clearly shows i am still highly symptomatic