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have seen the same hypercoagulation in patients with post covid vac syndrome as #longcovid patients (currently unpublished but discussed briefly here & here )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…
I dont think #POTS experts realise how all-consuming the first line treatments can be:
🚰Drink loads of water...that you can't retain because part of POTS is water-retaining endocrine dysfunction (and going to toilet every 30 minutes with orthostatic intolerance is a breeze 🙄)
🧦Wear compression garments...which are ridiculously hard to put on (especially in those with energy limiting comorbidities like ME), and are incredibly uncomfortable, especially in the heat when you need them most
🪑Be upright as much as possible...even though your literal issue is being upright. And sleeping propped upright is of course super comfortable 🫠
COVID-19 vaccines and adverse events of special interest: A multinational Global Vaccine Data Network (GVDN) cohort study of 99 million vaccinated individuals
Summary of key findings:
- Patients often had a high symptom burden
- Most tests came back normal, especially for mRNA recipients
- #MCAS and #POTS targeted therapies generally seemed most effective with few side effects
- Experience of healthcare was poor
We also ran some cluster analyses to see if we could identify patients with similar symptoms and link these to other things like test results. Unfortunately we did not find any notable clusters; possibly because the sample is too small, and/or because the disease is heterogeneous
When i was employed by @NHSGrampian i wrote a generic letter to your doctor about key things to look for in #longcovid/#postvac:
The aim was to give drs some direction based on emerging evidence as the NHS has offered nothing helpful in terms of guidance dontbelievehype.co.uk/covid-%26-vacc…
I was told to remove any reference that i worked in the NHS which i had initially written in the letter.
The NHS didnt want any association with *checks notes* evidence. It was deemed "too risky".
Its almost like they had an expert employed and deliberately chose not to listen and act accordingly... And now theyre being sued for negligence. I feel like this might have been avoidable, especially so in Grampian's case...
If we look a bit closer at the results, it does look like a subgroup of IVIG patients get distinctively better (> 20 % improvement), and other get a bit or significantly worse.
From this, I surmise that we could maybe predict most will experience light improvement with albumin, but the outcome is less predictable with IVIG, though favouring improvement to some extent.
Fatigue and tiredness are different. Simple way to show this:
First generation antihistamines block histamine action in the brain. Histamines are a wakefulness molecule. Hence a side effect is drowsiness and tiredness.
But these drugs can also significantly relieve fatigue.
If fatigue was a form of tiredness, this would be unlikely to happen, especially considering the other mechanisms of action with first gen antihistamines which are not conducive to wakefulness
This suggests at least for some people with fatigue, their fatigue is caused by excess histamine. This may also explain the (poorly named) "wired & tired" feeling many patients experience. Histamine is keeping them awake ("wired") whilst *also* triggering fatigue ("tired")