Kelly Also, people who suffer from long bouts of clinical depression end up with no friends. People may understand at first, but they tend to put a time limit on how long you are “allowed” to be severely depressed. Or, since they cannot see something physically wrong, don’t even care.

Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.

We need allies we can count on to be there to support us. Who believe us. /13

I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do /12

I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it /11

All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection /10

Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid. /9

This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up. /8

The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it. /4

What is PEM and What is NOT PEM?
***From today's presentation by Lucinda Bateman

PEM is:
✔️PEM is a distinctive exacerbation of the patient’s symptoms and a further reduction in functioning after physical, cognitive, orthostatic, emotional, or sensory stress.
✔️PEM is diagnostic in

Many suffering with Long COVID in the UK are told their brain fog is psychological.

Well it's not. It appears to be linked to 'leaky brain blood vessels and a hyperactive immune response'

We need to do better in the UK and stop gaslighting patients.

uk.news.yahoo.com/researchers-di…

So keep up the fight. Call out injustices when you see them - but then refocus on the message at hand. Covid is airborne. It’s not over. It causes devastating Long Covid. The best way to prevent it is a layered strategy that includes clean air & respirators. We can do this. /end

Like most of us - I’m feeling hurt & betrayed by the knowledge that the WHO quietly upgraded their ventilation & air quality while pushing droplet dogma to the masses. They knew it was airborne & only protected themselves.

A 🧵on science, trust, trauma & how to move forward /1

S Blitshteyn MD, FAAN, Dysautonomia Clinic Agreed, but I'd also look into activated infections that many of us carry asymptomatically. Chief among them, from what I've seen in a few hundred Long Covid patients, has been bartonella.

If I had limited funds for #LongCovid research, I would not have wanted to spend it on studying sleep disturbance, exercise, meditation or other lifestyle measures. Instead, invest in new and repurposed therapies that target neuroinflammation, autoimmunity and mitochondrial

Then why aren’t those of you publishing on dangers of reinfection wearing masks at packed conferences?

Or openly encouraging our colleagues to wear respirators- because their next reinfection could end their career or reinfect a #LongCovid patient?

The messaging doesn’t match.

I am an Israeli living in NYC. I lost family on October 7th and have Gazan friends. I am not afraid of the student protestors, even if I deeply disagree with some of their stances. What I’m afraid of is a world that sees thousands of children being blown up and says nothing.

This week the UK government published the results of a survey that say that TWICE AS MANY children in England and Scotland are suffering Long Covid now than a year ago.

I AM NOT A LAWYER, AND THIS IS NOT LEGAL ADVICE

if you're going to a protest where you expect to get arrested it's extremely important to have arrest training. this thread will not be as useful as a proper training, but i can offer a few tips:

Why do we undervalue the lives of disabled people so much? Why do we expect them to survive on a disability benefit that keeps them below poverty line - especially when being chronically ill drives expenses up? I spoke to a friend about this & was shocked by the response 🧵/1

M_P Suicidal ideation is very real. It should not be minimised, but discussed.
Was asked if I thought about suicide and had made plans. Well, of course I have, but you don’t get the benefit of all my research, do it yourself.
A bit snarky and jokey, but what we live with is not life