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have seen the same hypercoagulation in patients with post covid vac syndrome as #longcovid patients (currently unpublished but discussed briefly here & here )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…
My prediction: 1. Once MCAS is properly recognised, we'll find theres also platelet activation syndrome and basophil activation syndrome
2. MCAS, PAS, and BAS will likely be commonly comorbid
3. Significant symptom overlap
4. (Luckily) Treatment overlaps
As an example: many MCAS patients respond very well to aspirin (me 🙋🏻♀️). Ofc this is likely in part from blocking prostaglandins, but it also inhibits platelet activation
Platelets and basophils are similar to mast cells in that they are granulocytes - they contain lots of of the same chemicals (mediators) mast cells release, like histamine, & respond to various stimuli. Both platelets and basophils have roles in allergies too
This paper is absolute fire 🔥🔥 and some of the core points are 100 % relevant to SO MANY diseases🧵academic.oup.com/ckj/article/2/…
SIADH = syndrome of inappropriate anti-diuretic hormone. In SIADH, patients (usually) have high ADH (also called vasopressin). A problem with this is that patients store too much water which dilutes blood, causing too low blood sodium (hyponatraemia). Worst case = fatal
But much of this paper applied so much more broadly. Some quotes from the paper and general commentary:
Abstract:
"Recent studies show that hyponatraemia is often poorly managed—insufficient diagnostic tests are ordered and patients are undertreated....
When doctors say "i PrAcTicE eViDeNcE-bAsEd MeDiCiNe", what they really mean is...
1. Picking and choosing what evidence they approve of 2. Not even reading the latest guidelines 3. Refusing to read scientific literature (and being pretty shit at understanding it anyway)
4. Psychologising and gaslighting patients instead of admitting they don't know 5. Arguing against and ignoring legitimate experts, which has literally led to deaths,.e.g.:
7. Flat out making stuff up 8. Calling things they dont understand quackery 9. Being unable to update their knowledge in the face of new evidence 10. Mocking informed patients cos they cant drop their ego enough to consider that maybe—just maybe—patients have done proper research
Most doctors accept endometriosis is an inflammatory condition even if inflammatory markers are not raised
Yet when i speak to neurology or rheumatology they deny i have any inflammation because my inflammatory markers arent raised
So i simultaneously have an inflammatory condition, yet i dont have any inflammation 🧐
"But ahh☝🏻💡" they might say, "the inflammation in endometriosis can be localised to endometriotic tissue!"
And that is exactly the point - inflammation can be localised! For example, *in* the central nervous system, or around tissues directly being targeted by autoantibodies
Mitochondria Are More Than Powerhouses—They’re the Motherboard of the Cell
Fascinating piece by @MitoPsychoBio. Makes me wonder if the energy problems in ME are related to cristae alignment/mito-mito communication 🤔🧵scientificamerican.com/article/why-mi…
I.e. Picard states that healthy mito help out unhealthy mito, and thats why things like exercise can be good, as it forces everything to work together. But if that communication path is shut off, i would guess adaption to exercise/stress would not be possible
And if mito are not receiving help from their neighbours, then dysfunction proliferates.
So you end up in a state of individual mitochondria doing their own thing (no coherence), unable to adapt, and unable to call their buddies for help
POTS not being immediately life threatening i think is one reason (in combination with others) there is little interest in it medically. However, this is a very narrow view of life and death - and not just because it ignores the life ruining impacts of POTS 🧵
But also the fact it *can* impact life and death decisions.
For example: my tachycardia in A&E was very normal for me. "Thats just POTS"...whilst im haemorrhaging internally.
A key marker of a potentially fatal pathology was ignored because of POTS.
🤔 What if i had a cardiologist on my medical team who could advise?
🤔 What if the hospital hadnt left my POTS so poorly controlled?
🤔 What if we funded research for more effective treatments?