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

Sep 12
My prediction:
1. Once MCAS is properly recognised, we'll find theres also platelet activation syndrome and basophil activation syndrome

2. MCAS, PAS, and BAS will likely be commonly comorbid

3. Significant symptom overlap

4. (Luckily) Treatment overlaps
As an example: many MCAS patients respond very well to aspirin (me 🙋🏻‍♀️). Ofc this is likely in part from blocking prostaglandins, but it also inhibits platelet activation
Platelets and basophils are similar to mast cells in that they are granulocytes - they contain lots of of the same chemicals (mediators) mast cells release, like histamine, & respond to various stimuli. Both platelets and basophils have roles in allergies too
Read 5 tweets
Sep 8
SIADH and hyponatraemia: why does it matter?


This paper is absolute fire 🔥🔥 and some of the core points are 100 % relevant to SO MANY diseases🧵academic.oup.com/ckj/article/2/…
SIADH = syndrome of inappropriate anti-diuretic hormone. In SIADH, patients (usually) have high ADH (also called vasopressin). A problem with this is that patients store too much water which dilutes blood, causing too low blood sodium (hyponatraemia). Worst case = fatal
But much of this paper applied so much more broadly. Some quotes from the paper and general commentary:

Abstract:
"Recent studies show that hyponatraemia is often poorly managed—insufficient diagnostic tests are ordered and patients are undertreated....
Read 34 tweets
Sep 2
When doctors say "i PrAcTicE eViDeNcE-bAsEd MeDiCiNe", what they really mean is...

1. Picking and choosing what evidence they approve of
2. Not even reading the latest guidelines
3. Refusing to read scientific literature (and being pretty shit at understanding it anyway)
4. Psychologising and gaslighting patients instead of admitting they don't know
5. Arguing against and ignoring legitimate experts, which has literally led to deaths,.e.g.:

6. Leaving patients to suffer rather than investigating the cause of their symptomsmanchestereveningnews.co.uk/news/health/on…
7. Flat out making stuff up
8. Calling things they dont understand quackery
9. Being unable to update their knowledge in the face of new evidence
10. Mocking informed patients cos they cant drop their ego enough to consider that maybe—just maybe—patients have done proper research
Read 10 tweets
Jul 13
Another inconsistency in medicine:

Most doctors accept endometriosis is an inflammatory condition even if inflammatory markers are not raised

Yet when i speak to neurology or rheumatology they deny i have any inflammation because my inflammatory markers arent raised
So i simultaneously have an inflammatory condition, yet i dont have any inflammation 🧐
"But ahh☝🏻💡" they might say, "the inflammation in endometriosis can be localised to endometriotic tissue!"

And that is exactly the point - inflammation can be localised! For example, *in* the central nervous system, or around tissues directly being targeted by autoantibodies
Read 6 tweets
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

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