Helen M

Long Covid since March 2020 -healthcare worker on pause #FBLC

[tern @1goodtern]

Articles seem to be completely pointless on here, but I'm trying it again.

No one sees them, no one reads them.

What's the point?

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

This ⬇️ is your essential listening for today!

In just 4:30 mins, Baroness Linforth perfectly sums up why every school needs clean air:
▪️less sickness
▪️improved pupil focus
▪️reduced supply teacher costs

…and all for less than £10 per child per year.

Please watch & share!

[Brittani James, MD @DrBrittaniJ]

Millions of people got sick, then got sicker — and then stopped getting better.

They came back with normal labs. Unremarkable imaging.

And the quiet suggestion that maybe the problem wasn't biological.

Long COVID didn't just introduce a new illness. It exposed how modern medicine responds when suffering can't yet be measured.

Modern healthcare systems struggle with:
- Illness without measurable biomarkers
- Symptoms that fluctuate and defy categorization
- Patients — especially women — whose suffering outpaces the science
- Chronic complexity in a system built for acute resolution

What Long COVID revealed was already there.

Patients with ME/CFS, fibromyalgia, and dysautonomia (like POTS) had been describing this reality for decades.

Long COVID just made it impossible to ignore.

In this essay, I explore:
- Why Long COVID exposed cracks in medicine that existed long before the pandemic
- How "we can't explain this" quietly became "this may not be real"
- Why chronically ill patients already knew this story
- How a system built for acute disease failed millions with chronic illness
- Why Long COVID's research funding is catastrophically misaligned with its actual harm
- And what medicine still owes the patients it dismissed

https://t.co/ZyhfAYtqn2

[Liam's LC/ME Journey @liamsLCjourney]

Yesterday, I stepped down as CEO of my company. Not because I wanted to, but because in mid-January, I became bedbound with Stage 4 ME.

For the past three months, I've watched my team run the company I built while I just lay here, unable to live the high-impact life I was used to.

At first, I vowed to get better so I could return to even part-time work. But as I gradually and inconsistently improved over months, I became radicalized for a different cause:

Not a single person deserves to live like this. But yet we do, and and no one will save us but ourselves.

So today, I begin a new role: I will dedicate the next year of my life - 18 waking hours a day - entirely to this community.

I suppose it's time I introduce myself (I've also attached a photo of me, in bed, feeling much worse than I look):
- Out of college, I co-founded a magazine that took me around the world doing sports journalism and broadcasting.
- Over the past 7 years, I have assembled the greatest team to build and run a sports tech company from the ground up
- In the early days of the pandemic, I co-founded and led @getusppe, a team of hundreds, to deliver 17 million+ pieces of PPE to healthcare workers.
- I specialize in acting with urgency, seeing gaps, and connecting people to fill them. And most of all, in uniting and building community.

I have accomplished a ton in my 35 years on earth before I got sick, but Long COVID and ME are, by an order of magnitude, the biggest challenges I have faced.

But when there are so many gaps, there's simply no time to complain. We must roll our compression-wear up and get to work. So here is what I have planned:
- Guides and essays:
- The Severe PEM Crash Survival Guide
- What's the Deal With Brain Retraining?
- So You Have Long COVID, Now What?
- ...and so many more!
- Treatment Experience Surveys to fill the gap between random Reddit anecdotes and slow clinical trials (GLP-1 data released in two weeks)
- The first comprehensive AI analysis of all publicly posted recovery stories to look for trends and correlations
- Helping a fellow patient and test expert publish the first interactive and comprehensive testing guide for ME
- Helping a fellow patient increase the visibility of Stage 4/5 patients as the faces of ME
- Creating a network of the highest agency patients working on these conditions to mutually share information, support, and unblock each other
- Creating Long COVID and ME microgrants to fund people to work on small but impactful projects
- Incubating and raising funding for founders who want to start non-profits and companies (let five more Amaticas flourish!)
- Overall, pouring my heart out to support every single person who is interested in working for the betterment of this community (especially where others are far better than me, like science and advocacy!)

No one is going to do this work for us. Not doctors, researchers, or government. This must be patient-led.

Want to join the movement? Send me a DM, and let's figure out what we can do together. Time to get to work.

[MBwLCME @marinaflares]

Here is some context for this action because I don't think people are angry enough. This is not limited to France. It's just that the meeting was held in France and the French patients were awesome enough to do this.
The project itself is (was) and EU project under 1/

[Cat @Catinmyfamily]

So many people truly don’t understand how bad ME is. I just read a thread of people talking about alternate ways to care for their teeth because tooth brushing is too hard. And, sadly, I understand the need though I am fortunate to mostly be able to brush regularly.

[James Throt MBBS, MD, PhD, FRCPath @JamesThrot]

Empathy requires fully functioning frontal lobes.

COVID damages the frontal lobes. This is well documented.

People continue to be repeatedly infected with SARS-CoV-2.

Each reinfection inflicts further damage to your brain and your lobes.

Diminishing empathy is very real.

[tern @1goodtern]

It's absolutely shameful that society is not standing alongside people with Long Covid and giving them the support they need.

It's absolutely shameful that many people who are right on the edge are having to fight for themselves when they have almost nothing left to give.
🤬

[Adam @ABrokenBattery]

Emma Shorter was told people who don’t recover from behavioral treatment for #MECFS have made the illness their personality. She was told not to meet other patients and to trust the therapist over her own body. She went from walking 4 mins a day to needing a wheelchair.

[tern @1goodtern]

I met up with a long time friend this week and his first words to me were "you look really well".

I do. And I feel healthier than I have in two decades. I feel great.

I've had nearly six and a half years without infection.

He looked *awful*. 😥

The last time I had seen him was four years ago when he still looked OK, and his first words to me that day were, "you're not still wearing one of those things, are you?" 😔

[Adam @ABrokenBattery]

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018

“It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

[Sass @sasswashere]

“We downplay the virus at our peril, warns Yaneer Bar-Yam.

And children are more at risk than we thought.”

Must Read:

https://t.co/cVTb4fSHBD

[Jo @cfs_jo]

@CaroleBruce17 @ClrBlwrs @wesstreeting I can’t think of one other illness where people are so ill, which has no referral pathway nor one specialist in the nhs.

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

Profoundly disappointing news. There can be no justification for this delay. It simply would not be tolerated for any other medical condition. I urge @wesstreeting to reconsider and take steps to bring healthcare for ME patients into the twenty-first century.

[Meleri Williams @meleriwilliams7]

I’ve spent the past weeks talking to #ME patients and carers in Wales.

There is a spectrum of severity, but there are thousands in dark rooms across the country, unable to walk or talk.

Tomos is one of them.

Watch/listen/read on BBC Wales news today ⬇️ https://t.co/OHa7mcE2rp

[tern @1goodtern]

This should be tattooed onto the palm of every "health correspondent":

You're more likely to develop invasive meningococcal disease if you have low CD4 T cell counts.

And you're more likely to have low CD4 T cell counts after a Covid infection.

[Stephanie deGiorgio @DrSdeG]

Is anyone going to discuss what happened to our T and B cells thanks to Covid? Will this be what makes the medical profession wake up?
This is not weird niche conspiracy theory stuff BTW.

[charlos @loscharlos]

“You’re not just becoming disabled,” said Elle Seibert, 31, who has dealt with debilitating fatigue and cardiac symptoms since 2020. “You’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.” https://t.co/jVI9ruk1Re

[chantzy @chantz_y]

No secret! I haven't been sick in close to 3 years despite many exposures because I mask

[Adam @ABrokenBattery]

12-yr-old Aveline loved trapeze & sports until #LongCovid changed everything.

“Within a day my entire life was flipped around… it’s been a constant battle against my own body.”

“It’s really isolating. All my friends go to school together and I would give anything to be there.”