If other diseases were treated like #LongCovid:

"You expect me to believe blood sugar is the reason we needed to amputate your leg?"

"Riiiiggghhht, so the lump in your lung has just *moved* to your liver..."

"And how exactly do you think shellfish made your throat swell up?!"
"Youre saying the virus has been hiding in your body and has now come back to life and given you shingles?"

"Really, you think your own immune system is 'attacking' you"

"There's no evidence a head injury can make you thirsty"
Physiology is complex.

It utterly baffles me that so many doctors seem to think we know and understand it all, that what they learnt at med school is fact and final, that things they cant imagine happening *might actually be happening*.

#MedTwitter
Its one thing to be ignorant, we cant all know everything after all. But quite another to deny emerging evidence because it doesnt fit with outdated training
Thread inspired by the haematologist who recently told me, a scientist with an interest in the effects of small clots that block capillaries, that there's "no scientific evidence that small clots can block capillaries" (among other things)

#TeamClots

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More from @angryhacademic

Apr 19
Guideline based medicine doesnt always equal evidence based medicine

#MedTwitter
Example: my haematological treatment is based on standard pulmonary emboli guidelines. These do not take into account the complexity of my case, so how can my treatment be evidence based?
The doctor is essentially winging it as much as doctors treating #postvac #LongCovid outwith guidelines...because there are no evidence based guidelines right now
Read 4 tweets
Feb 6
Disinformation is the source problem but why do people believe it is a more valiant route to tackle imo.

The instant dismissal, even in the face of no evidence, by scientists and others is one reason people believe disinfo and distrust other sources ime
Ofc if we got rid of the source there'd be no problem, right?
Well yeah but i dont think thats realistic since any1 can say anything & even make a false but evidence based conclusion (see pinned tweet). We dont all believe everything we hear, theres reasons we believe what we do
Finland puts a lot of effort into this and it seems more successful than binary "blame the disinfo spreaders" narratives many of us have
Read 4 tweets
Feb 6
Well after a run of ~4 pretty good weeks, the last 5 days have been 💩
Not quite full on relapse, but not well enough to really be functional

Mainly fatigue, dizziness, nausea, blocked nose, dry throat, a weird feeling in my head, tingling everywhere

#postvac #LongCovid #MECFS
My head has tingled (on the skin) which i dont think ive had before

The tingling in my legs has been weird, like all over tingling in my calfs that feel momentarily like my calf is being hugged tightly by tingles
Feeling in head, not quite a headache (except when it has been), not quite head pressure. But kind of is head pressure 🤔

Vascular symptoms are returning like losing blood to my arms when holding my phone lying down
Read 4 tweets
Feb 5
Last year i had several long convos with people about myocarditis and no one could cite a proper comparison study. Very happy to see this.

Some things we still dont know tbough...

@Tiff__Annie_
1. Does (multiple) vaccine + (multiple) infection = better or worse outcome?

2. How does this account for the vaccine myo cases that are taking over a year to diagnose? Is this a similar problem post- covid?
3. The metrics used to indicate severity may not be a good reflection of living with myo.

I know folk who have lost their job, who can barely walk, etc with vax myo, but when they go to hospital theyre told its anxiety, so those patients stop going to hospital
Read 5 tweets
Jan 19
wee update:
had a couple of pretty good weeks which has surprised me. everything in life is tolerable. still worse than before my last relapse, but if life stays like this, i can work around it. tho i usually feel "good" pre-relapse, so hoping it's not the calm before the storm
had TWO dr apps this week:
1. at the nutrition clinic: anaemia has resolved so i can stop iron supps, just got some follow up apps to check my haemoglobin, B12 etc stay stable

2. GP: spoke to advanced nurse practitioner. i was sorta ready to put up a bit of a fight as it was...
to discuss tests & meds recommended by a private dr. she was absolutely lovely tho, & shocked how much ive been suffering

- agreed to D-dimer: if elevated 1 month after anticoagulation ends I may be indicated for longer term anticoagulation as i have a high risk of further clots
Read 11 tweets
Dec 26, 2022
Well fuck.

The 2 fam members im staying with had:
1. Intermittent headache
2. Tingling and fatigue

Both just tested positive

Another who was at dinner yesterday, now feeling rotten, also positive

Im still negative 😬😭😭
Ive been basically living in FFP3 except in my room which only ive been in and ive kept ventilated and hepa filtered.

The 3 risky things ive done:

1. Had window open but maskless dinner with person #2 above, on thursday evening
2. Had a shower at the house we had xmas dinner in. Had HEPA filter on and the fam whose house that is tested negative today

3. Ate xmas dinner on my own next to a hepa filter, in a room where everyone had been in
Read 12 tweets

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