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
#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
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
A list of my diagnoses and suspected diagnoses:
#MCAS
#Dysautonomia
#POTS
#LongCOVID (sans infection)
#microclots
Pulmonary emboli
This is not political. This is our reality.
#MCAS
#Dysautonomia
#POTS
#LongCOVID (sans infection)
#microclots
Pulmonary emboli
This is not political. This is our reality.
https://twitter.com/angryhacademic/status/1517223123199959041
No doubt some of you will look a bit into this campaign and you will probably be horrified at some of the folk supporting this. So let’s be clear here:
1. You can agree with folks/groups on some things but not others.
1. You can agree with folks/groups on some things but not others.
Agreeing with some things does not mean you endorse or support or agree with everything. That would be ridiculous wouldn’t it?
2. If that is your focus YOU are making this political. This is about patients
2. If that is your focus YOU are making this political. This is about patients
3. When the world ignores you and someone FINALLY listens, guess who we collectively turn to…If you’re upset that “conventional” folk aren’t on the support list, guess why that is?
“But Harriet, you don’t shut up about it. You’re NOT being silenced!”
Firstly, you do not know what goes on in the background, so please don’t make assumptions.
Firstly, you do not know what goes on in the background, so please don’t make assumptions.
Secondly, @ukcvfamily have contacted over 100 researchers, nearly every MP, and a tonne of journalists to get listened to. Nearly entirely crickets. Except for the most part the people/groups you probably don’t like.
(there are some great folk supporting us ofc #TeamClots)
(there are some great folk supporting us ofc #TeamClots)
Like any chronic/rare/new/under-recognised illness, all we want is someone to properly research us, and for doctors to take us seriously.
You should want this too, as it will help improve safety, if nothing else
You should want this too, as it will help improve safety, if nothing else
If you have experienced a chronic reaction, and you have some time/energy, please help us characterise and start to understand these reactions:
https://twitter.com/angryhacademic/status/1534957579939479555
some resources that might help:
dontbelievehype.co.uk/covid-%26-vacc…
dontbelievehype.co.uk/covid-%26-vacc…
gosh, lots of people politicising this
lots of "i told ya so's"
lots of "you were duped"
thankfully lots of love and support too ← you folk are awesome!
we won't progress beyond "us n thems" unless we are united with empathy and understanding
lots of "i told ya so's"
lots of "you were duped"
thankfully lots of love and support too ← you folk are awesome!
we won't progress beyond "us n thems" unless we are united with empathy and understanding
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