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

Jun 22
Mitochondria Are More Than Powerhouses—They’re the Motherboard of the Cell


Fascinating piece by @MitoPsychoBio. Makes me wonder if the energy problems in ME are related to cristae alignment/mito-mito communication 🤔🧵scientificamerican.com/article/why-mi…
I.e. Picard states that healthy mito help out unhealthy mito, and thats why things like exercise can be good, as it forces everything to work together. But if that communication path is shut off, i would guess adaption to exercise/stress would not be possible
And if mito are not receiving help from their neighbours, then dysfunction proliferates.

So you end up in a state of individual mitochondria doing their own thing (no coherence), unable to adapt, and unable to call their buddies for help
Read 6 tweets
May 28
POTS not being immediately life threatening i think is one reason (in combination with others) there is little interest in it medically. However, this is a very narrow view of life and death - and not just because it ignores the life ruining impacts of POTS 🧵
But also the fact it *can* impact life and death decisions.

For example: my tachycardia in A&E was very normal for me. "Thats just POTS"...whilst im haemorrhaging internally.
A key marker of a potentially fatal pathology was ignored because of POTS.

🤔 What if i had a cardiologist on my medical team who could advise?

🤔 What if the hospital hadnt left my POTS so poorly controlled?

🤔 What if we funded research for more effective treatments?
Read 6 tweets
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

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