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have seen the same hypercoagulation in patients with post covid vac syndrome as #longcovid patients (currently unpublished but discussed briefly here & here )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…
In a way i can understand why doctors dont get ME, immunologists havent yet accepted MCAS as a fairly newly described disease (< 20 years), & haematologists are sceptical of microclots, but i cannot for the life of me understand why neurologists are clueless about dysautonomia
Like you'd think the part of the nervous system that literally controls functions that KEEP US ALIVE would be a core tenet of neurology training.
I feel like every neurologist should have more than basic competency in dysautonomia, with a few sub-specialists
Just like they have for other neuro diseases—every neuro can tell you about MS, including diagnosis & treatment, but a few specialise specifically in MS
Something that desperately needs to change in medicine: the default assumption that "over-testing" is bad and causes undue anxiety.
This needs to change on several counts:
1. Ask the patient, explain the tests, the implications, the risks (including false positives) 🧵
Then let the patient decide. This is patient autonomy which all the guidelines preach, yet few practitioners honour
2. Some patients find the LACK of testing anxiety inducing, yet most doctors seem to assume testing is what causes anxiety
Ive had some luck with GPs when i flipped this script and said i understand the risks and would feel less anxious getting unnecessary tests than sitting here wondering if we've missed something easily testable
Some excellent point in this video👇🏻 the queer community has been proud to speak up, stand out, and fight for justice. Without them, HIV would've claimed MANY more lives. Yet many are complicit in the spread of COVID 🧵
A lot of people dont trust the government, understandably so. Yet the government are the biggest peddlers of pretending this pandemic is over, and on the occasion they admit its not over, they claim that its not a problem. Contrary to all evidence:
From acute illness, to disabling long covid, to "hidden" harms that manifest later like an early heart attack, stroke, earlier onset dementia, and potentially even cancer.
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