"There is currently no single unified definition of Long COVID, which is a detriment to the research, diagnostics, treatment, and patient rights."
I bang this drum a lot.
There needs to be *one* definition of Long Covid, *now*.
"Affecting over four hundred million people globally."
That’s roughly 1 in 20 people on Earth. It’s not rare. It's everywhere.
"There are few recommendations, and no formal training exists for medical professionals…"
Clinicians often don’t know how to diagnose or treat it because there's a spectacular lack of curiosity and provision.
A longer one...
"The consensus agreement emphasises that functional impairment, reduced effort tolerance, new-onset or worsening of pre-existing conditions, abnormalities in clinical parameters or medical imaging...
... and other detectable systemic pathology should be included in the definition or as a distinct clinical category, regardless of the presence or absence of associated symptoms."
The expert panel agreed that the definition of Long COVID should not be limited to people who simply feel unwell. It must also include people who have:
Functional impairment – struggling to carry out normal daily tasks, even if their symptoms aren't always obvious.
Reduced effort tolerance – getting exhausted much more quickly than before, even with light activity.
New or worsening health conditions – like diabetes, high blood pressure, or heart issues that develop or flare up after Covid.
Abnormal test results or scans – even if the person doesn’t report typical Long Covid symptoms.
Why does all that matter...
This means Long Covid can still be present even if someone doesn’t *feel* sick in a typical way. For instance, they might not report fatigue or brain fog, but scans can show lung scarring, or blood tests reveal inflammation or clotting abnormalities.
In other words, it’s not just about symptoms. it’s also about measurable changes in health. This broader definition ensures that people aren’t dismissed simply because their symptoms are subtle, invisible, or not yet fully understood.
"Unanimous consensus … to educate all health care workers about the possible complications following SARS-CoV-2 infection."
Long Covid can affect any organ. You can’t diagnose it like a single disease, it requires listening to patients and looking at the full picture.
"There are no specific validated diagnostic tests."
This makes Long Covid a clinical diagnosis (like many autoimmune conditions) and means patient narratives are *absolutely critical*.
"Biomarkers are critically needed …Most of these biomarkers are not readily available or easily accessible in clinical practice…"
These are blood or tissue tests that could objectively confirm Long Covid, helping prove what patients already know in themselves.
"No evidence-based guidelines … treatment requires an individual and tailored approach."
There's no one-size-fits-all solution.
Every single person may need a different combination of therapies.
"Management of POTS, sleep disturbance and MCAS were highly conserved."
These conditions, common in Long covid , have known treatments, and international experts are in agreement on them.
"Caution around exercise and pulmonary rehab … in the absence of an adequate clinical evaluation."
Pacing, not pushing, is key. Exercise without proper testing can harm people with PEM (post-exertional malaise).
"Research shows … immune, cardiovascular, endocrine, neurological, reproductive, and renal systems are all affected."
This is a *systemic disease*.
It affects *everything*.
It doesn’t stop at the lungs or just cause fatigue.
"... Impacts on educational performance, mental health, and physiological development"
Kids with Long Covid may struggle at school, not just with fatigue but with attention, memory, and emotional regulation.
"Objective physiological abnormalities in young patients"
This isn’t all in their heads. Abnormal exercise tests, clotting profiles, brain imaging all back up what children and parents are reporting.
"Long-term sickness absence from work … increased income inadequacy."
It’s fuelling poverty, disability, health inequality.
It's a slow-moving economic crisis as well as a health one.
👀
"Routine cognitive impairment testing in critical professions"
Brain fog and attention issues aren’t just frustrating. They can be dangerous in safety-critical jobs like healthcare or aviation.
"Consensus and non-consensus show that vaccination and Long COVID is an issue that is still not clear."
Vaccines slightly help reduce the risk and severity of Long Covid, but whether they help or hurt those already affected is still an open question. 😕
"An international task force should be developed … governments need to reaffirm priorities."
Expert consensus is clear: it’s time for public investment, global coordination, and a serious plan.
Serious problems call for serious action from serious people.
Some of those serious and wonderful people...
I've got to go to work, but I'll come back and tag the rest later...
@andrewewing11 @davidjoffe64 @dysclinic @drannanz @yaneerbaryam @smbilodeau
@jencurtinmd @sunny_rae1 @drmark_faghy @leogallandmd @resiapretorius
@HannaMOllila @PutrinoLab @ARosarioMD... and I'm not sure the rest are on here, but if you know them please feel free to tag these wonderful people in.
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You've maybe heard the word methylation recently, and while people are talking about it as if it's a big deal, you don't have the faintest idea what it means.
Let's change that.
A quick thread about the vital process by which your body decides which *genes* to silence, how that system works, and what happens when it goes wrong.
I've just been sitting with a family wrestling with a serious new onset health condition that came out of nowhere, and, of course, it's one that's made more likely by Covid infection.
And then one of them says,
"everyone has more health problems now, don't they..."
"... I'm not imagining it, am I? So many people seem to have problems like this. I know so many families with serious things going wrong. Is it just that we're hearing more about it now? Or are people having more health problems?"
And I could just hear that information vacuum that is begging to be filled.
*Authorised* illness absence:
still 37% up in Primary Schools
still 50% up in Secondary Schools
and 🚨 an astonishing 74% up in Schools for Children with Special Educational Needs and Disabilities.
The most vulnerable children, the children most in need of protection from infectious disease, and our government is just throwing them under the bus.
🤬
A penny has been trying to drop in my mind for a while, but it hasn't quite fallen yet. It's about how some of these simple-minded folk who have clawed their way in charge of public health organisations don't seem to be able to get their heads around complexity.
The reality of the situation with infectious disease is that different diseases transmit in different ways.
And different diseases have different short term and long term impacts.
Trump is a locked in Russian asset, run by Putin himself.
But just think for a moment how phenomenally hard that is to maintain - Trump is one of the most public people in the world.
Consider this for a moment...
Putin has to be constantly hyper-careful about communications with Trump.
Digital comms are dangerous due to *anyone* who might listen in.
Western intelligence agencies are no longer allies in this sense, but even then we've known that even allies listen in on each other's communications, especially when those communications are with Russia.