Covid has caused an increase in patients with Dysautonomia, a condition which destroyed my quality of life
Yet at Dysautonomia International’s big fundraiser, there was no mask requirement
Worse, they’re publicly stating masks don’t work & quoting the debunked Cochrane study
I’m generally not one to punch down on advocacy organizations because I think we need to fight like heck to lift one another up.
I appreciate that they had HEPA filters, corsi rosenthal boxes and were apparently providing free masks.
But I can’t sit silently when an organization that should be protecting people starts spouting far right rhetoric
What difference does it make if you put masks at the door when you’re telling people they don’t work?
If you’re not leading by example & wearing them yourself?
People look to these organizations to set the tone.
They assume they have our best interests at heart.
Dissuading people from masking during a pandemic is not advocacy. It’s not patient centred. It’s not leadership.
We’ve known for years that Long Covid often causes Dysautonomia/POTS.
There’s been such a significant increase in patients that there aren’t enough doctors to treat them.
Many have lost everything to the condition and are now fully disabled.
Yet this conference will end up causing more disability.
It will end up creating more patients when what we desperately need to do is stop the spread of Covid and start helping those who’ve been disabled already.
The best way to do that is to wear a mask.
Their post says: “there is insufficient evidence to show that mandatory masking in a public setting does anything to reduce COVID risk
Please read this Cochrane review, considered to be the definitive unbiased analysis of this important public health question”
That’s a lie.
They say that people feel “passionately” about the subject but then absolve themselves of any responsibility to actually protect the attendees.
They claim that doctors and Long Covid researchers agreed there was no need to mandate masks at the event.
I will be honest, I wish every indoor event and conference had mandatory masking.
I’m sick of people dying and becoming disabled from a disease we know how to prevent.
But I also recognize that almost no one is willing to require masks because we’re cosplaying 2019 “normal”
Hospitals, medical conferences and events for disabled people need to be the exception.
They need to do better.
They need to realize that they have a duty to do no harm.
They have a responsibility not to make sick people even sicker.
If they’re not willing to do that, the bare minimum they can do is not deride those who do take precautions.
They could encourage masking rather than spread lies that they don’t work.
They could refrain from sharing junk science that’s been largely debunked & discredited
We know masks work.
We know respirators work even better.
We know two way masking is better than one.
We know asymptomatic transmission is a very real threat.
We know all of this, and yet “advocacy” organizations are choosing to ignore it.
We have to push back on this. Over 400 million people have Long Covid. Many of them also have Dysautonomia.
Another Covid infection could wipe out whatever baseline they have left.
We need leaders and advocates to set the tone.
We need them to be honest about transmission
Above all else, we need them to stop the spread of Covid.
We need them to say “enough” to preventable death and disability.
We need them to wear masks and encourage others do the same.
When you know better, you do better
)
I feel like shit. And it’s flared my 
