Its my 20 month vaccine anniversary today.

I now take: ketotifen, sodium, statins, anticoagulants, antiplatelets, H1 and H2 antihistamines, plus vits/mins to address deficiencies and high needs, and some supplements

I still feel like crap

#postvacsyndrome #LongCovid
These meds address:
😞Mast cell activation syndrome
😞My inability to produce aldosterone (endocrine dysfunction)
😞Endothelial damage
😞Clotting
😞Platelet activation
😞Unexplained hyperhomocysteinaemia (i.e. no MTHFR variant)
Luckily for me, people believe me. But some only seem to believe me because I agree with them about other things, because i take issue with the same people they take issue with, because i havent gone on media they dislike

And that is a HUGE bias we need to overcome
Patients took the vaccine, then got abandoned by doctors, scientists, the media, and politicians.

Left suffering. Left to lose their job. Left to use up their savings. Left to be their own dr.
Called misinformation. Called liars. Called idiots. Called sheeple.

Told it must have been infection. Told it cant be the vaccine. Told they are wrong. (For some) Told their drs are wrong.
Used as fodder to show how dangerous the vaccines are. Used as fodder to show how dangerous grifters are. Used as fodder to support whatever bias someone has.
Abused online. Abused at work. Abused at home. Abused by "friends".

Shout out to all in the #NEISvoid who experience similar abuse too 🫂🫂

#MECFS #Fibromyalgia #ChronicPain #chronicillness
20 months of physical hell. 20 months of a complete mental mindfuck. 20 months of challenging my own biases. 20 months of admitting where i was wrong. 20 months of reassessing my approach to science and science communication

For the lessons this hell has taught me, i am grateful
20 months of meeting some of the kindest, funniest, and most supportive people: my new #vaccineinjured fam @ukcvfamily @CWTAIC @React19org

20 months of appreciating how lucky i am to have my v understanding friends and fam IRL and my online network (esp the cats @7ikozu 😻)
20 months of linking up with amazing doctors and scientists, most notably #TeamClots who, more than anything are great friends who have supported my journey immensely @DeansKevin @Sunny_Rae1 @drclairetaylor @cazd45 @dbkell @doctorasadkhan and others!
In 20 more months, even if im not better, i hope
🤞🏻vaccine injuries are recognised officially
🤞🏻we can have sensible conversations about vaccine risks
🤞🏻patients get early treatment
🤞🏻the gaslighting ends (i dream big folks!)
🤞🏻we have a win for #TeamHumanity

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More from @angryhacademic

Nov 20
i've felt really ill today & writing this is causing horrible near painful nausea. but just to say this before i go to bed:

i notice that
those who oppose vaccines use us as proof theyre right

those who are pro-vaccine,& who see me critique grifters, use us to show theyre right
please folk, we are humans.

in some cases, severely disabled humans.

stop using us.

please listen. please believe. please stop the division. please support #TeamHumanity
those who legit care:
listen
amplify
check in
ask what our needs are
(and where applicable) treat us medically or research us scientifically

they dont:
insert their views on vaccines
accuse us of lying
tell us it wasnt the vaccine
call us misinformation or idiots
Read 6 tweets
Nov 19
Aseem is talking for a #vaccineinjuries charity:
• who dont appear to be registered as a charity

• who i, a vax injured person, have never heard of

• who seemingly have no affiliation with @ukcvfamily who are the biggest support group in the uk

Who is this helping exactly?
@ukcvfamily If youre not vaccine injured and youve come to comment on why im wrong: dont.

Try listening to vaccine injured voices instead.
Read 6 tweets
Aug 25
"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"

Well said @Sunny_Rae1

#MedTwitter #LongCovid #MECFS
@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
Read 4 tweets
Aug 25
Many #PostVacSyndrome patients stayed silent for quite some time (~9 months in my case)

We stayed silent because we didnt what to spread vaccine hesitancy

We didnt know we were not the only ones

How did this pan out? 🧵

#vaccineinjuries
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
Read 14 tweets
Aug 23
Cause matters when discussing illness.

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
Read 10 tweets
Jul 29
am starting to prepare the data from our #vaccineinjuries #PostVacSyndrome survey for analysis today

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 screenshot of a survey question: Before getting the COVID19 Screenshot of survey question asking: "After the COVID1
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 %).
Read 9 tweets

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