charlos

😎🌁🎷 #LongCovid March 2020 😵‍💫

[charlos @loscharlos]

Thx @guardian for inviting me to share these #LongCovid questions.

One of the most agonizing parts of this condition has been waiting for the world to catch up with what we know about the disease - & the abysmal lack of urgency to do anything about it. /1
https://t.co/7Jq1gzjyvA

[charlos @loscharlos]

@coco_chatel Great list. WPSIATWIN would be close for me as well.

[charlos @loscharlos]

K had to — send me yours

[Shaney Wright @ShaneyWright]

Cerebral hypoperfusion is prevalent in ppl with Long Covid (vs controls). It can be tested for with a transcranial doppler. You would expect any Long Covid therapeutic to resolve / improve this indicator. Why then isn't it ever being used as a success metric in treatment trials?

[Liam's LC/ME Journey @liamsLCjourney]

The day after taking my weekly Ativan/lorazepam, I always feel like my brain is completely clear for the first time all week. Like everything causing ME has been reset.

If I lay here with my eyes closed, I feel no symptoms: no sickness, no fatigue, no pain.

The day of is also pretty good as a PEM shield, but this feeling is always the day after. I wonder why.

[Polly Patterson @PollyPAuthor]

Pretty devastated to have become officially unemployed due to severe and incurable sickness, at the age of 35.

For all those ghouls out there, I continued to work from bed until I was briefly hospitalised with dangerous heart rhythm changes during an autonomic crisis in April 2025, after having been ill since a mild COVID infection in 2021.

As everyone who knows me is aware, things drastically deteriorated from that hospital incident, leaving me almost completely bedbound and reliant on full time care.

No wedding. No children (apart from Rocky the cat) No job. No economic activity.

My NHS GP is an absolute diamond and has finally secured my bedbound status so I can get some the basic blood tests and injections I need at home. She's also taken on all the private specialists' prescription requests and never once asked me if I'd considered getting some sunlight and going for a walk.

However aside from her, the NHS does not give a F***. The government does not give a F***. The media does not give a F*** (apart from George Monbiot and less than a handful of others)

My question is therefore simple.

HOW DARE THEY COMPLAIN ABOUT SICKNESS RELATED ECONOMIC ACTIVITY WHEN WE ARE SCREAMING OUT FOR HELP TO GET BACK TO WORK??

[Darren Parkinson 🌍💚🤘 @DarrenBar88]

I am no longer a registered nurse.

Not through any choice, but because I got #LongCovid.

2 years ago I lost my nursing job because I'm too ill too work. Today my nursing registration expired.

20+ yrs given to the NHS. Ended by getting a disease without a cure.

[Hannah Davis @ahandvanish]

Scotland finds #LongCovid prevalence to be 7.59% of the population as of 2024, in a cross-sectional, nationally representative survey:

https://t.co/bjqiOnA2Gd

[Outbreak Updates @outbreakupdates]

We spent decades teaching people that cancer is mostly bad luck, bad genes, or bad habits.

Then you find out 2.3 million cases in a single year were attributable to infections.

[Justine B @jewstein3000]

MECFS researchers discovered this before Covid. It’s a critical biomarker for the illnesses allegedly without biomarkers

[Stephanie Laidlaw @yogastephy]

Clean air for the rich! Do they have OCD? Of course not, only middle class and lower class people who are airborne aware have OCD if they are still masking and using hepa filters to clean the air! When the rich do it, it’s something different. For them, their mitigations during

[charlos @loscharlos]

The most popular @wirecutter product of all time is an air purifier.. 🤔🤨

[Han 🖤 CHECK PINNED! @spoonfulofhan]

Disabled people aren’t pretending to be sicker than we are. We’re usually pretending we’re doing better than we are.

[Jon Douglas @atranscendedman]

Hannover Medical School, 992 people.

Among those with Long COVID in 2021 who returned in 2024, 77.4% still met criteria about 4 years after infection.

More than 95% were never hospitalized initially.

https://t.co/B73MHae8Oa

[Jon Douglas @atranscendedman]

Here's one person who had substantial clinical improvement, with viral RNA detected before treatment and not detected after.

One person is not an answer. But it is a clue.

[charlos @loscharlos]

“The brain scans revealed lower overall cerebral blood flow, meaning the amount of blood reaching the brain, in the #LongCovid group.

These findings suggest that changes in cerebral blood flow may be one part of the biological picture behind fatigue & concentration difficulties”

[tern @1goodtern]

Wait.
What.

[Fidji Simo @fidjissimo]

Thanks @Forbes for featuring the great work we’re doing @ChronicleBioAI.
There are exactly 0 FDA-approved therapies for the hundreds of millions of people suffering from diseases like POTS, Long COVID, MECFS or hEDS. We created ChronicleBio to change this.
By building the deepest dataset on these conditions and leveraging AI, we will understand what the biology behind the symptoms is. From there, we can map the right drugs to the right patients.

[Workwell Foundation @4Workwell]

Interested in Helping to Develop a Non-Invasive Way to Measure Blood Flow to the Head?
If you are a woman between the ages of 18-65 and you have myalgic encephalomyelitis (ME) or you are healthy, you may be eligible to participate in a study.
https://t.co/HkSrt0sXRj #MECFS #study

[Patient-Led Research Collaborative @patientled]

"Teachers are over-represented among people living with #LongCovid... In a nationwide USA sample from 2022, 9.5% of currently employed elementary and secondary teachers reported having Long COVID." https://t.co/hHRrvNjvVc

[Patient-Led Research Collaborative @patientled]

"We encourage schools to invest in interventions that will have public health benefits with minimal educational consequences. We particularly highlight air purification and ventilation as highly effective in reducing risk of infection." https://t.co/hHRrvNjvVc