just having a look at the raw data output and this stands out. most participants report no health problem that affected their day-to-day living prior to the offending vaccine
after the offending vax general health was reduced to being very poor
even those who had no indication something could go wrong, who led completely unrestricted lives, had their world turned upside down after vaccination
many already chronically ill folk seem to have on their mind that they might react badly (and there was a distinct lack of chronic illness patients in trials), and indeed it seems ME and long COVID patients have a high prevalence of severe reactions (maybe around 20 %).
but for many who the vaccine ruined, such side effects were completely unexpected. in other words, just like #LongCovid and post-infection syndromes (e.g. #MECFS, #LymeDisease), a severe reaction could hit any of us
I think when #chronicillness patients notice new symptoms, people think we are being dramatic.
But really what we are noticing is new malfunctions with unknown consequences, and we're getting a reminder of just how broken we are.
To give an analogy... 🧵
#medtwitter
I have had REALLY shit cars before, and one car that would keep going no matter how broken it was (i.e. a really good car).
With the good car, when a new thing happened (the engine light came on, it made a weird noise, or whatever) i knew i had nothing to worry about
The car never seemed to stop chugging along so new little problems didnt worry me. I could largely ignore them and get them checked out in my own damn time
"A variety of symptoms, including thunderclap headache, focal deficits & movement disorders, can occur after SARS-CoV-2 vaccination, & an (re)activation of the immune system is suggested as [a] cause"link.springer.com/article/10.100…
I was a NHS COVID scientist researching immunity as part of the UKHSA SIREN study, and I am a vaccine-induced long COVID patient so I understand the lived experience and the science. Read about my journey here: lc-sc.co.uk/about-me
I am part of #TeamClots, a group headed by Professor Resia Pretorius, Professor Doug Kell, and Dr Asad Khan aiming to understand the role of clotting in long COVID & vaccine injury
It's even cooler than this: lying down shunts blood towards the head. This tells sensors in the brain you are overhydrated and triggers changes that make you pee more = lower blood volume
This is most clearly seen in (models of) microgravity where blood goes to the head enough to cause the forehead to swell by ~7 %, whilst shifting ~1 L fluid out of the legs, triggering diuresis
Obviously in most people lying down doesnt cause notable problems, but in POTS we are already incredibly dysregulated.
Our blood vessels dont respond appropriately so our body is more like a water bed in the way fluid shifts
#MECFS is more prevalent than MS, HIV, Parkinsons, etc. It would utterly absurd if medical professionals knew nothing of these diseases, yet this is the situation with ME
Can we also take a minute to appreciate that this was written by a ME patient. Whilst disease isnt a competition, QoL & functional capacity is lower in ME than every other disease its been compared to. It honestly feels like the closest to death you can be without dying