Understanding the cause can help direct what tests to do, what treatments to have, and in some cases improve safety for products or pharmaceuticals
Context is essential for clinicians to help effectively
Some examples:
Having flu like symptoms can be from infection or drug withdrawal
Tremor can be a sign of neurodegenerative diseases like MS or a head injury
A rash can be from allergies to washing detergent or infection
It would be absurd to go to your healthcare provider & not mention youve been exposed to an infectious person, are withdrawing from drugs, had a recent head injury, or you notice a trend when you use different detergent
These add essential context & clues as to tests & treatment
It is therefore also absurd to go to your healthcare provider and NOT mention that your symptoms seemed to occur in line with having a vaccine.
Yet many folk have "helpfully" suggested patients to not mention they think the vaccine is a trigger to symptoms, and leave it to the care provider to make the link instead
This is unlike advice for any other condition, adds work to work out correct tests/treatments, and delays essential adverse event reporting
Imagine if VITT or GBS patients didnt mention the vaccine, that could be life threatening.
There is ofc the argument to not mention the vaccine to reduce the chances of medical gaslighting, which is a sad reflection of reality.
Hopefully soon, currently less established reactions will be better recognised
This then helps direct the healthcare provider: MCAS, POTS/dysautonomia, microclots (when theyre recognised), (neuro)inflammation, autoimmunity, etc, rather than wasting time exploring less probable pathologies
An added benefit to mentioning the vaccine link is that if healthcare providers see such reactions in other patients, they have some familiarity. This then helps new patients, raises awareness, and improves safety tracking
Bar patients themselves deciding not to mention the vaccine due to likely gaslighting, it is not only an unhelpful suggestion to not mention the vaccine, but a potentially harmful one.
"The only thing worse than living with a debilitating chronic illness with no known treatment is living with a debilitating chronic illness and not being believed"
@Sunny_Rae1 "Learning to live with covid [like this] is like a car crash waiting to happen" - with the analogy that we dont view driving safety measures as infringing on our rights...so why would we let a biohazard spread free?
@drclairetaylor highlights the debilitating effects of #dysautonomia:
Quality of life in #POTS patients is about the same as heart failure patients
Many spent months feeling isolated, everyone else getting vaccines seemingly with no problems (sometimes because they werent talking about side effects either), feeling like there is something uniquely wrong with themselves
Doctors who meet their first post vac syndrome patient had no knowledge that possibly their other patients are suffering similar. Thus repeatedly we hear "its rare", and theres nothing that could help
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 %).
2. Realise theres overlap between ME and LC, please pick what you identify with
3. If you took meds which stopped the pain but without meds your periods were particularly painful, please select "yes"
4. Because i often get DMs telling me the problems with my polls (which is why I turn comments off): its a twitter poll with max 4 options, its not perfect, you dont have to answer, and i realise this doesnt capture the full picture, etc. Im just curious is all! 😊
My mean platelet volume has been elevated and was BEFORE the vaccine. This study suggests it may link to thrombosis and inflammation ingentaconnect.com/content/ben/cp…
But theres so far been a couple things that i realise are scientific narratives that arent really true
1. Fry said the ONLY way we know something is caused by the vaccine is monitoring it to see if it occurs above expected levels
This isnt true & a mathematician shouldve been more accurate. Such studies determine whether POPULATION risk is increased (still not necessarily causal)
But do not tell us whether INDIVIDUAL harm is causal.
It actually doesnt matter at a population level for individuals, which makes risk quantification difficult.
Eg i might be the only UK vax injured with pulmonary emboli