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 %).
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
important for #MedTwitter: most #VaccineInjured #PostVacSyndrome patients who had another vaccine after their offending dose got WORSE.

we should NOT be recommending further #covidvaccines in this group

@P_H_S_Official @NHSScotland @UKHSA @NHSuk @gmcuk @NICEComms screenshot of survey question reading: If you have had anoth
nearly half (43 %) of those who answered this question have been off work for 6 months or more or have had to stop working completely screenshot of survey reading: How long have you had off work
this surprises me; most #PostVacSyndrome patients who responded to our survey did not get acute flu-like symptoms screenshot of survey question: Did you experience the expect
last up before i get cracking actually sorting the data:

most reactions occurred within a week, very much in line with an acute inflammatory response screenshot of survey answer: How long after the offending CO
just wanna give a h/t to @React19org in particular who have been collecting fantastic data for a long while now

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More from @angryhacademic

May 11
Something underappreciated with chronic illness is the amount of things constantly going on *even on better days*.

For example, on a lower symptom day, having a conversation can mean:
🦵🏻 My legs start tingling and internally vibrating
🙌🏻 The numbness in my hands gets worse

🧵
👂🏻 Pulsatile tinnitus gets worse
🫁 Breathing becomes harder
💓 My heart beats faster and i can often feel palpitations
🤢 Nausea kicks up a notch
😵‍💫 Dizziness gets worse
💪🏻 My muscles twitch and sometimes spasm
👋🏻 I might start tremoring
😨 My energy drains and fatigue sets in
🤯 My head feels "full" (I don't know how to describe this sensation)
👀 It becomes harder to focus my eyes
🗣️ I'm fighting to stop my speech becoming slower and/or quieter
🤔 My concentration and "present-ness" fades
Read 8 tweets
May 7
We often say a difficulty with illnesses like ME and POTS is they span multiple body systems so they dont have a "home" in a siloed medical system.

But medicine created its own categories that nearly always include multi-system diseases.

For example:
MS: autoimmune, neurological

Type 2 diabetes: immunological, metabolic, endocrine

Type 1 diabetes: autoimmune, endocrine, metabolic

Stroke: vascular, metabolic, neurological

Crohns: autoimmune, gastrointestinal

Antiphospholipid syndrome: autoimmune, haematological, metabolic
B12 deficiency: autoimmune, metabolic, dietetic, neurological, haematological (depending on the case)

Endometriosis: gynecological, endocrine, metabolic, vascular, immunological

PCOS: gynecological, endocrine, metabolic

Many of these have a genetic & probs other components too
Read 5 tweets
Apr 2
Im glad to see more doctors speak about things like #MECFS #POTS #MCAS #fibromyalgia etc but it also worries me because its seems many have a rather superficial understanding. For example, i quite often hear such doctors speak about MCAS only in terms of histamine

#medtwitter
They talk about the more obvious histamine related symptoms like hives. I heard one dr say one of the "most common" symptoms is dermatographia (skin writing) and im really not sure thats the case (both our samples may be biased though)
Treatments are (as far as I've seen) exclusively spoken about as trigger avoidance and antihistamines.

Similarly ME is described as chronic fatigue (not PEM), and POTS is described as dizziness and fainting
Read 11 tweets
Mar 15
It's #LongCovidAwarenessDay2025 and these are the messages i want different groups to understand:

Medical professionals:
Our best healthcare teams dont have all the answers, nor do they pretend to. Instead, they read the evidence, they listen, they believe, they monitor 🧵
They take risks (with informed consent), they keep accurate notes, they advocate, they wear respirators, they accommodate (e.g. low lighting, allowing us to lie down, or have online appointments and home tests), they care.
Medical professionals (again):
Long COVID is not a complete mystery. The GMC state that you need to work according to best evidence. This requires you to read the evidence and listen to experts. If you did this, you'd know to rule in/out the most obvious at the very least:
Read 18 tweets
Jan 22
Ive just finished watching Prof Evans and it really seems to me that the purpose of the inquiry has been lost.

The point of an inquiry is to scrutinise *and* learn lessons to do better in the future.

Nearly the entirety of Evans interview was saying how great everything was/is
Clearly things DO need improving otherwise we wouldnt have the need for a vaccine injury charity to be set up to support patients with vaccine injuries.

We wouldnt be waiting for basic tests/diagnoses, we wouldnt be censored, and we wouldnt be battling VDPS
Some jumbled notes from Evans:

Kept talking about gold standard evidence without appreciating where we can actually do better. Research methods is a dynamic field, the gold standard of today is the poor practice of tomorrow
Read 45 tweets
Nov 27, 2024
Had an appointment with my best dr today. The only dr i fully 100 % trust. Some points for #medtwitter:

1. I trust him because he believes me, first and foremost

2. He knows i struggle being upright and with light so he turns the lights down & preps a couch for me to lie on
3. He knows i am clinically vulnerable so wears a respirator, and if med students/whoever are observing, he gets them to mask up too. Also has the window cracked for ventilation
4. Even though i see him for very specific things, he provides space for me to talk through how EVERYTHING has been since we last spoke. He writes up any symptom changes in my notes so its an accurate record. This is important as it clearly shows i am still highly symptomatic
Read 12 tweets

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