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have seen the same hypercoagulation in patients with post covid vac syndrome as #longcovid patients (currently unpublished but discussed briefly here & here )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…
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
Update to the @NHSScotland #POTS pathway disaster:
In EDIT 7, I went through a bunch of emails & one showed Dr Claire Taylor was invited to help on the pathway. I wanted to know Dr Taylor's involvement so I FOI'd any emails between her & NSS/POTS groups👇🏻 dontbelievehype.co.uk/covid-%26-vacc…x.com/angryhacademic…
As you will see in the blog, Dr Taylor had no substantive involvement. Having seen the pathway, this is no surprise. She was clearly unable to attend meetings due to her clinic. But what is maybe a surprise is that Dr Taylor absolutely hammered NHS Lothian's approach to POTS
Her critique was sent at a similar time to my complaint, so maybe our collective efforts were the trigger towards the pathway being retracted.
Brief recap on methods:
This was a blinded randomised placebo controlled n-of-1 trial. What does that mean?
Blinded: this means I did not know if I was truly getting blood taken, or if it was sham (placebo) phlebotomy
To do this, a suitably qualified friend would take my blood as normal using either proper tubes (real), or dudded tubes (sham). I was blindfolded & wore noise cancelling headphones so didnt know what I was having done, & tubes were disposed of before I took the blindfold off
💊 Examples: Sodium cromolyn, ketotifen, vit C, quercetin, luteolin
🧪 Main mechanism: Unlike antihistamines, which block the histamine receptor as their primary mechanism of action, mast cell stabilisers help prevent mast cells from spewing out their contents ("degranulation")
In MCAS, this degranulation is inappropriate, with mast cells reacting to benign triggers such as foods, air pressure, or scents (among many other things). Therefore, stabilising mast cells can help with some histamine issues...
Mast cell activation syndrome (#MCAS) & histamine intolerance are common features for many #longcovid & #PostVac patients. 🧵on antihistamines which are commonly used in MCAS & histamine intolerance. (I will do another post on mast cell stabilisers) lc-sc.co.uk/bodily-systems…
There are different types of antihistamines with different actions, but they all block a histamine receptor so histamine can no longer attach to the receptor & cause chaos. I.e. antihistamines do not stop histamine production, they just stop histamine from working properly
🧪 Main mechanism: These work by blocking the H1 receptor, which has roles in hypersensitive reactions (e.g. wheezing, itching, coughing, blood pressure dropping)...