2. Realise theres overlap between ME and LC, please pick what you identify with
3. If you took meds which stopped the pain but without meds your periods were particularly painful, please select "yes"
4. Because i often get DMs telling me the problems with my polls (which is why I turn comments off): its a twitter poll with max 4 options, its not perfect, you dont have to answer, and i realise this doesnt capture the full picture, etc. Im just curious is all! 😊
H/t @cazd45 who inspired this poll after a SUPER interesting chat bouncing ideas around about long covid 😃
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
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 %).
My mean platelet volume has been elevated and was BEFORE the vaccine. This study suggests it may link to thrombosis and inflammation ingentaconnect.com/content/ben/cp…
But theres so far been a couple things that i realise are scientific narratives that arent really true
1. Fry said the ONLY way we know something is caused by the vaccine is monitoring it to see if it occurs above expected levels
This isnt true & a mathematician shouldve been more accurate. Such studies determine whether POPULATION risk is increased (still not necessarily causal)
But do not tell us whether INDIVIDUAL harm is causal.
It actually doesnt matter at a population level for individuals, which makes risk quantification difficult.
Eg i might be the only UK vax injured with pulmonary emboli
We did the right thing. We followed the science and did what doctors told us. Now the science is abandoning us and doctors are gaslighting us. #CanWeTalkAboutIt
You all know what we're talking about. Im not going to write it in this thread. The silence is deafening & the abuse is deadly
Im participating in this to support my (new) family; we’re all suffering. If you saw my DMs you would be horrified at what some have & are going through
Many have suffered unspeakable things. Things you couldn't make up if you were writing a horror movie. This is of course not new. But there is an added layer of denial regarding the cause. I've been very lucky in my journey - no denial. This is not the case for most others
my current (unoriginal) take on #microclots, influenced by lots of folk including chats with #TeamClots.
1. we need to understand the full pathway of events: what come first (upstream), what are the consequences (downstream)
2. we need to understand the best target
2a. if the upstream trigger is transient, like acute inflammation ± (quickly degraded) spike protein, then targeting the downstream effects (microclots) is the right pathway
2b. if the upstream trigger is chronic, like reactivated/persistent viruses, autoimmunity, chronic mast cell activation, or lingering spike protein, then treating the downstream effects (microclots) may not result in long-term resolution
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
⛔
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