#LongCovid

When someone is seriously ill with #LongCovid and presenting to a health care provider for help, “all your tests came back normal” should be the words that trigger the beginning of an extensive investigation, not the end of a superficial one.

There is no serious "expert" in the world who could be "perplexed" over the number of people getting #LongCovid. It was already evident from SARS1 sequelae | #longSARS | and the early Long Covid publications in 2020 that this was going to be a devastating problem.https://twitter.com/thehill/status/1525251816136617987 …

Just a PSA bc I'm terrified by how many folks think otherwise: You can catch Covid multiple times. You are not immune to it if you’ve had it already. You chances of complications & #LongCovid increase with each reinfection, even mild & asymptomatic ones. Even vaxxed.

Today I travelled 4000miles to get tested for Microclots to test the theory that this is causing my #longcovid symptoms. Turns out I have them. This testing needs to be made accessible to all those suffering around the world so they can be treated (1)

For the 1st time in 2 years I called off work because of #LongCovid symptoms . After 4 consecutive 20,000 step days my legs are literally on fire with nerve pain & weakness. Omicron in January did this. Multiple infections can exacerbate long covid. You don't want this virus.

#longcovid / chronic illness fucks you up. You feel shit. Every. Single. Day. And if you do try and push it, and try to enjoy today, you pay by losing your tomorrows. It steals your present and your future. And it obliterates your past. You are no longer what you once were.

Why do we have people literally obsessing over whether #LongCovid prevalence is 5, 15 or 30% of those who get Covid, when the bottom-line is that millions across the world are now ill with a debilitating, multisystem, treatment-less condition, notwithstanding the denominator?

How It Started (Long COVID Nightmare): I’ll be better in 6 Months How It’s Going: I would kill to even get 10% better someday, so I could just be Housebound and not Bedbound for the rest of my life. #LongCovid

A lot of people talk about #longcovid in terms of a list of symptoms. But beyond symptoms there's something else. Like a feeling that something at the very core of your being is fucked. I can't put it more accurately or eloquently. But other #longhaulers will know what I mean.

Last week I was dismissed from my role as class teacher on grounds of ill health capabilities. Now that it's been shared in the community I can begin to process it. A career I only ever dreamt of ended abruptly and it is quite honestly heartbreaking. #LongCovid

If there are 10-15 million people suffering with debilitating #LongCovid worldwide instead of 15-20 million, does that make those suffering less worthy of recognition, urgent biomedical research, biomarkers & rapid treatment trials?

How do we get people to talk about #LongCovid without giving them LongCovid?

There are *millions* of people suffering at the same time with #LongCOVID without any treatments or treatment trials available. I believe patients when they tell me they are suffering. I don’t think we should minimize the real potential #covid has to seriously disable people.

For people who are minimizing #LongCovid & complaining about “so many people fear mongering” You’re hearing a mass of people screaming & kicking, being swept under the rug, into the void & lives destroyed. Have some f*cking empathy. You might appreciate it later. :)

People who don’t think #LongCOVID is a problem: “It’s over-self reported and probably at least partly anxiety” Also people who don’t think #LongCOVID is a problem: “I don’t know anyone who has it” Do you not see how your attitude might be a barrier here?

Talking to those who were docs at the peak of the HIV epidemic and seeing the grief on their face as they recall the days seeing so many sick patients while still trying to learn and treat as best they could resonates. We are all changed at our core. #MECFS #LongCovid