A patient goes to the dr with a range of systemic symptoms that dont neatly fit current diagnostic criteria. Symptoms started rapidly & strongly a few hours after the COVID vaccine; however, the reason for the problem isnt important for this lesson
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The doctor does some tests
Hb, RBC, haematocrit, MCV, MCH, platelet count, WBC, neutrophil, eosinophil, basophil, lymphocyte, & monocyte count. Mean platelet volume is elevated but this isnt reported & is instead hidden in the lab records. “Your test results are normal” the doctor says
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Still, the patient suffers. The doctor does more tests. Na, K, Cl, bicarbonate, urea, osmolality, creatinine, eGFR, alk phos, albumin, total protein, ALT, AST, GGT, bilirubin, lactate dehydrogenase, phosphate, urate, CK. “Your test results are normal” the doctor says
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The patient continues to suffer. Maybe this is immunological. The doctor does more tests. IgG, IgA, IgM, CRP, IL6. “Your test results are normal” the doctor says
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“Are you sure you cant think of anything else?” the patient whimpers. An infection or autoimmune response, the doctor thinks. HIV, borrelia burgdorferi IgG, intrinsic factor, ANA, anti-MPO, anti-PR3, tTG-IgA autoantibodies. “Your test results are normal” the doctor says
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The patient looks confused & is still suffering. The doctor does more tests. Ferritin, folate, PT, INR, aPTT, D-dimer, VEGF. And a head CT scan. “Your D-dimer is elevated, but since all your other test results are normal, this is probably inflammation” the doctor says
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“There has to be something wrong” the patient cries. Maybe hormones/metabolism, the doctor thinks clutching at straws. Cortisol, TSH, free T4, cholesterol, HDL, LDL, TAG, ApoA1/B, glucose, HbA1c, ACE, transferrin, caeruloplasmin. “Your test results are normal” the doctor says
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The patient drags themselves despairingly to their next appointment. “Please help me”. The doctor does more tests, maybe its diet. Vitamins A, B1, B2, B6, D, E, K, Zn, Cu, Se, Mn, Mg, Fe. “Your B12 & D are low, but other than that your test results are normal” the doctor says
The patient feels relief. Maybe vitamins will help.
They do not.
“Your test results are normal” the doctor says, reassuringly. “I’ve checked your blood, kidneys, liver, immune system, inflammation, brain, hormones, metabolism, infection, and nutrition.”
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“I'll have to refer you” the doctor says
This didnt reassure the patient, but the referral brought some hope of answers. Of help. Of treatment
The new doctor looks at the results, does some physical examinations & orders a MRI. “Your test results are normal” the doctor says
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“This must be functional” the doctor says. “I will liaise with psychiatry” the doctor says.
The patient cries. This cannot be functional. Something is wrong. “Your test results are normal” the doctor reiterates.
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Another doctor does not believe this. They dont believe patients suffer for no reason, or the best medicine can do is therapy
They run more tests. Porphyria, ESR, MMA, homocysteine. “Your homocysteine is elevated, but I dont think that explains your symptoms” the doctor says
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"Let’s investigate some more” the doctor says. “We need to understand why your mean platelet volume and D-dimer are elevated” the doctor says.
Another blood test. Venous oxygen saturation. “Your cells are suffocating” the doctor says.
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“We will get a VQ scan”.
“Your test results are *not* normal” the doctor says
“The VQ scan shows multiple pulmonary emboli & areas of no ventilation nor perfusion. This pattern of damage is in line with what we understand about microclots"
"We can treat this” the doctor says
The patient cries with joy
This patient is me.
I am not unique.
“Your test results are normal” is harmful.
Do not confuse normal test results with functional, unexplained, or psychological aetiologies. When a patient presents with an unusual symptomatology, explore don’t ignore.
i know if i wasn't #vaccineinjured i would probably scoff at this. i'd have preconceived judgements about some of the people involved.
this is fine, but don't let that cloud your judgement and empathy.
the patients are the one's suffering. listen to us.
and if you don't like the folk involved, then consider what our options have been. mainstream media ignore us. the speaker in the house of commons scoffed at us. dr's have been gaslighting us. scientists have been shouting "antivax" at us.
Massive thank you to the vaccine injured community, esp @ukcvfamily but also many others (special thanks to @Fallaryn), who have introduced us all to research and brought untold levels of support
Massive thank you to all the #microclots researchers and clinicians who have brought us valuable insight and quite literally life saving advice. The idea to get a VQ scan was a game changer and i cant thank the person who suggested that enough
#Antivax narratives actively harm the voices of the legit vaccine injured.
Antivaxxers fuel fear, take stories out of context, and encourage others to not get vaccinated. this means the vaccine injured (who may not be able to get boosters) are now less protected by herd immunity
There is a cruel irony that antivaxxers often shout about side effects being hidden, but they are the ones driving some of the silence. When a study comes out (e.g. the viral vector blood clots) and...
it gets pounced on my conspiracy bullshit, taken wildly out of context, spun into something it isn't, and drives people away from a safe and effective public health measure, why the fuck do you think some people don't want to talk openly about these things?!
something #academics i think dont want to admit when it comes to marking #student work:
you quite often just *know* what the mark is & this seems to be quite reliable between markers
no amount of rubrics can define this & often these trap markers into box-ticking #AcademicTwitter
would you agree?
i hate having to justify my mark based on a rubric; it is usually obvious who is a upper/middle/lower 1st, 2:1, 2:2, 3rd, or fail.
obvs the issue is bias without something "objective" but...
...i don't think the objectivity line helps as we just end up fitting our mark into the rubric rather than letting the rubric define the mark
key aims of a pilot study include (depending on the study):
☑️checking the feasibility of the protocol
☑️work out finer details (e.g. dosage, type of placebo/control)
☑️assess randomisation/blinding/etc procedures
im sure there's other reasons but key things overall i think are: 1. a diagnosis gives you limits - what treatment can and can't be tried, what can trigger things, what's the prognosis, etc
2. it gives patients a community - there's tonnes of groups for people with all kinds of ailments, conditions, illnesses, disabilities. being able to talk to someone with a shared experience helps make everything less shit