The most dangerous words in medicine aren’t “There’s nothing more we can do.”
They’re, “Your tests are normal.”
Because too often, that sentence isn’t followed by curiosity.
It’s followed by dismissal.
Too many people are told to doubt their own bodies simply because medicine hasn’t found the answer yet.
A normal test is not proof that suffering isn’t real.
It’s only proof that one test was normal.
Progress begins the moment we stop confusing “I can’t explain it” with “It doesn’t exist.”
This @Nature article has potential implications that extend beyond MS. Researchers found evidence that Epstein-Barr virus (EBV) may continue driving immune activation through infected B cells, offering a biological framework that may be relevant across complex chronic disorders. And is pathway driven.
If persistent viral activity keeps the immune system activated, what happens next? How does that immune response change vascular physiology? How may those vascular changes alter blood flow to the brain or autonomic regulation?
Each biological event can create the next, and following that sequence is how we identify the mechanisms driving disease.
Trying to jump ahead to biomarkers without simultaneously understanding the pathways that create them can actually slow scientific discovery down.
It becomes a needle-in-a-haystack approach, searching for signals without following the biology that produces them.
Virus → Pathway → Biomarker → Treatment
https://t.co/gLUZLyqKbE
There has been a discussion on X lately about biomarkers for #LongCOVID, so I thought I would share some blood markers available that might point to immune, clotting and endothelial dysfunction. Encouragingly, all of them are available at specialised pathology labs worldwide.
These are also the molecules we keep finding trapped in fibrinaloid microclot complexes across our various (proteomics) analyses: fibrinogen, von Willebrand factor, Factor VIII, serum amyloid A, complement proteins (C3, C4, C5, C1q, factor B), platelet factor 4, P-selectin, myeloperoxidase, neutrophil elastase, transforming growth factor beta-1, endothelin-1, vascular endothelial growth factor, Serum Amyloid A, and many more. We also know that many of our collaborators have also find these molecules in the soluble fraction of plasma, when when they have done proteomics and ELISA tests.
We have known for a while that these proteins are present in both the soluble and the insoluble fraction of plasma, mostly, we have just been searching inside the insoluble fraction of blood plasma for possible dysregulated inflammatory molecules that might in future, be targeted by treatment regimens. What is new in our approach, is that we have only recently started looking at post-translational modifications (PTMs), on proteins and we have found that some are extensively modified: glycated, oxidised, deamidated, citrullinated.
What is PTMs? A post-translational modification (PTM) is a small chemical change made to a protein after it has been built, that slightly alters the protein without changing its underlying identity.
A simple way to picture it: the protein is the basic product, and PTMs are the stickers, tags and add-ons attached to it afterwards. The item is still the same item, but the additions can change how it looks and behaves, whether other things can grab onto it, and how long it lasts.
In the body, these tags get added in response to conditions like inflammation, high blood sugar or oxidative stress. Common examples are sugar molecules stuck on (glycation), oxygen damage (oxidation), or other small chemical groups. The protein's amount in the blood can look completely normal, while these tags quietly change how it works, which is exactly why a routine test can read "normal" and still miss the problem.
Also note that much earlier work by well-known researchers in the fibrinogen field has found post-translational modifications on fibrinogen in various inflammatory diseases.
More to come from our research group! Please, in the mean time see a the table below. These might be some valuable biomarkers that might to used in clinical investigations and might assist clinicians to target some symptoms.
@dbkell and I have also discussed possible devices like capillaroscopy for detecting vascular damage. @ImmunoFever has recently discussed the applications in numerous posts.
Lastly, this is in no way suggesting that these are the only biomarkers, it is just a small snapshot molecules our lab is finding and studying. There are numerous more biomarkers that can be looked at for neuro-immunology, muscle and many more systems.
Medical history is full of "imaginary" illnesses that turned out to be real. Ulcers. MS. Long Covid.
And patients were right all along.
So if you're healthy, one ask: When someone tells you they're sick, the first instinct should be to believe them.
“To me, masking is praxis: I care about and want to protect my community as well as myself.”–Aneita, a trainee clinical psychologist in London. See interview by @MsJulieSLam.
https://t.co/gEMJ0T9Sc5
https://t.co/uFWvTlNSNR
“Nobody is coming to save you” but your day literally gets better after you consume art made by other people. You hang w friends & you’re no longer suicidal, even if just for a few minutes. They’re lying to you about the significance of community. People are saving you EVERYDAY!
Policymakers let SARS-CoV-2 rip across the population. People developed Long Covid because of this. Policymakers should talk openly about Long Covid and recognize what Long Covid is. They should also be held accountable for what they did.
@Kit_Yates_Maths I sewed through the night as a volunteer #ForTheLoveOfScrubs to provide scrubs for doctors nationally.
A grassroots organisation managed to organise & mobilise across the length & breath of the country in suppport of our frontline workers, faster & to higher quality than gov't!
This is MMA fighter Sean McInnes. When Anne Marie Boyle asked him to leave her alone, he punched her in the face so hard that he broke her cheekbone and her eye socket, knocked her unconscious, and left her with a life-altering brain injury.
He was given less than two years behind bars.
It would be a real shame if this post was widely circulated and impacted his career in a negative way.
We were let down.
We knew this long ago of course.
It’s a national scandal.
“The lives of NHS staff and patients were put at risk in the pandemic because of a lack of adequate personal protective equipment (PPE), the Covid inquiry has said.”
https://t.co/2qEYl7l239
Some of the most important words in medicine are not spoken by doctors.
They are spoken by patients.
“Something changed.”
“Please believe me.”
“I know my own body.”
Listening to those words isn’t fearmongering.
It isn’t anti-science.
It’s how science moves forward.
Every breakthrough begins because someone was willing to listen.
For Henry.
For Conall.
For Marc.
For Romaine.
For every patient still waiting to be believed.
💜
#MoralMedicine #PFS #PSSD #PatientSafety #InformedConsent #JusticeForHenryPetition
Today I discovered what happens when you’re too disabled to fit the system, but not disabled in quite the right way.
I learned that the NHS doesn’t always fail because people don’t care, it fails because the system is so obsessed with ticking boxes that it forgets there’s an actual human being standing in front of it. Or in my case… lying down.
After six days in hospital with a sepsis infection and an adrenal crisis, I was finally able to be discharged.
Patient Transport was called, but to my absolute shock, they refused to take me home because I have occasionally had access to a vehicle when a carer is available to drive.
TODAY, I have neither.
No vehicle. No carer. No family who can drive it, No friends available…. AND a specialist tilted wheelchair that won’t fit into even an accessible cab. Black cabs? NOPE. Still don’t fit. No room to manoeuvre into a rear face position… and cabbies simply won’t pick me up. safety first.
I explained that to the ward manager.
Then explained it again.
And again.
Each time I was met with the same question:
“Can’t you get someone to collect you?”
No.
The solution was, to discharge me anyway, knowing I don’t have any means to get home.
None.
And so, I was taken down to the discharge lounge… the lounge which is available for patients waiting for Patient Transport.
The very Patient Transport I’d already been told wasn’t available today as there’s ZERO capacity and a backlog of days worth of patients trying to get home.
I asked the obvious… “What happens when the lounge closes, and I still have no way of getting home?”
“Someone will deal with that then.”
No plan.
No solution.
Just… computer says no…
Somewhere we’ve replaced compassion with flow charts, and clinical judgement with algorithms.
If you don’t fit neatly into the system’s boxes, the system doesn’t adapt. It simply decides that you are the problem. That’s exactly how I felt today. An awkward inconvenience.
I’m not a difficult patient.
I’m a disabled woman who doesn’t fit your spreadsheet.
There’s a difference!
To be continued….
#NHSCrisis #DisabilityAwareness #WillIGetHome #FeelingBloodyAwful #NHS #LiverpoolRoyalHospital
Masks being worn by crew & health care workers during the 2026 shooting of Jackass: Best and Last. Just your annual reminder that the celebrity class often has access to viral protections you're not aware of.
#davossafe#mask
In clinical studies, the accelerated narrowing of a stent caused by synthetic folic acid intake was observed over a timeframe of 3 to 6 months.
https://t.co/X0jrc1y1Wh
Sign the Petition below to stop folic acid being put in to our flour.
https://t.co/ThW2vN5s61
Lying perfectly still for 12 hours caused the blood in his legs to pool. Drinking only Coke (which dehydrates you) turned that pooled blood thick and sludgy.
A massive blood clot quietly formed in his deep leg veins.
The fatal moment? Standing up. His calf muscle squeezed the vein like a pump, ripping the clot loose. It shot straight through his right heart and slammed into his lungs, instantly blocking all blood flow.
This is a catastrophic Pulmonary Embolism (PE) secondary to a DVT.
In the medical ward, we see this after long flights (Economy Class Syndrome) or extreme gaming sessions (e-Thrombosis).
Never sit completely still for hours. Hydrate with water and walk around every 2 hours!
FOLLOW ME for more medical breakdowns!
Young, healthy guy spends his Sunday in bed for a 12-hour movie marathon.
Barely moves a muscle. Drinks only a Coke.
He finally stands up to stretch, instantly collapses and dies on the spot.
What went wrong?