The medical reality of Long Covid
From early 2020 people were infected with the covid-19 virus, whether the diagnosis was confirmed with a positive PCR test, or whether the diagnosis was based only on the pattern and experience of the illness. Some weeks after recovering from the acute phase of the illness, a proportion of these people began to discover that they were not recovering their original health and had new problems like PEM, (post exertional malaise), fatigue, respiratory problems, difficulty sleeping, cardiac problems, loss of sense of smell and taste, and a huge range of other symptoms. This condition has come to be known commonly as long covid. or more formally as post-acute sequelae SARS-CoV-2 infection (PASC).
Medical doctors, General Practitioners and Consultants, when patients presented with long covid responded to the patients with a range of different responses. They told their patients to give it time, and they would get well. Doctors focused on the symptoms, on investigations of the symptoms in terms of classical acute diseases, and some courageous doctors just told the truth as they saw it that nobody knew what was causing the problem, and that medicine could not diagnose or treat the disease. The focus was on rehabilitation and symptom management.
Now it is two and a half years since this began and numbers of people still struggle every day with long covid and are in the same or worse condition with their health than they were at the beginning.
It is the norm to be told by doctors, and the media that there is no medical diagnosis or treatment for the condition. People are told they are imagining the symptoms and sent to psychiatrists for mental health treatment. They are sometimes told that long covid does not exist.
Alongside of all of this, over the last two and a half years, a number of brilliant research doctors around the world have been discovering many things about long covid and a picture is emerging of what it actually is. These understandings are not being received and incorporated into mainstream medicine.
One reason for this is that mainstream medicine exclusively practises what is called 'evidence based medicine' or medicine rigorously based on science. The doctors who are getting insight into what is really going on with long covid think out of this box. In other words they are more flexible in their thinking, more inclined to take account of the experiences their patients report to them as being real, and based on actual biological abnormalities in the bodies of those who have long covid. Some of these biological abnormalities that are written about in the medical research literature are named as viral persistence, immune dysregulation, endothelial dysfunction, auto-antibodies, microclots and toxin-like peptides in the gut.
There is one GP, a lady whose name is Dr Claire Taylor who presents a comprehensive view of long covid that is compelling. She is a GP working at the Circle Health Group in Sterling in Scotland. She is also a neuroscientist and she has a special interest in Long Covid, postural orthostatic tachycardia syndrome (PoTS), mast cell activation syndrome (MCAS) and myalgic encephalomyelitis (ME/CFS).
Here is what she says about long covid. (From her tweet stream on June 12th 2022 - (https://threadreaderapp.com/thread/1535963941360345088.html )
She says long covid is covid related thrombotic vasculitis. It is blood clotting happening throughout the vascular system because of the impact of the covid virus. She says, “thrombotic vasculitis is when the spike protein makes your blood vessels inflamed and form little clots that block small blood vessels” and she quotes this academic paper as backup - https://portlandpress.com/bioscirep/article/41/8/BSR20210611/229418/SARS-CoV-2-spike-protein-S1-induces-fibrin-ogen
She says, “when your blood has little clots in it filled with amyloid it causes more inflammation. Think of when you get a cut and the skin goes red and sore. That’s inflammation. Imagine that in your blood vessels. The oxygen in your blood then struggles to get to all the tissues.
What are Amyloids? “The build-up of amyloid proteins (deposits) can make it difficult for the organs and tissues to work properly. Without treatment, this can lead to organ failure.” From https://www.nhs.uk/conditions/amyloidosis/
She says, “Covid related thromobotic vasculitis puts you at higher risk of heart attacks and strokes after Covid. After all the blood vessels are inflamed. That’s what vasculitis means.” Her academic backup for this - https://publichealth.jhu.edu/2022/covid-and-the-heart-it-spares-no-one
She says, “what about your brain? ? is that spared? Unfortunately not. It’s is invaded by Covid-19 with a resulting huge increase in inflammation. Some people call it ‘brain fog’ or ‘neuroimmune’. It is actually ENCEPHALITIS. Sounds serious, right?” Her academic backup - https://link.springer.com/article/10.1007/s00415-022-11050-w
She says, “what’s in a name? In medicine we have always treated thrombotic vasculitis and encephalitis seriously. Not left people at home and tried to rehabilitate them with no treatment.”
She says, “Medicine likes biomarkers eg a test that shows exactly what the diagnosis is. We are getting there. For microclots- fluorescent microscopy can show these up. https://cardiab.biomedcentral.com/articles/10.1186/s12933-021-01359-7
We urgently need the technology in the UK.”
She says, “for encephalitis we can show on a PET scan. We already have PET scans. https://www.medrxiv.org/content/10.1101/2022.06.02.22275916v1 why aren’t we doing this?”
She says, “for bloods- there are a number of immune system markers raised after Covid. Maybe we can get them into practice? I would call this ‘multi-system inflammation’ when cytokines and interleukins are raised.” Academic backup - https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1010359
She says, “What’s in a name? The next time you see a patient with long Covid think of the pathology. Covid related thrombotic Vasculitis - and acknowledge the implications. Take it as seriously as the pathology suggests.”
She says, “would you try and rehabilitate and psychologicalise a patient with vasculitis or encephalitis? No you absolutely wouldn’t. Why are we funding hundreds of rehab papers?”
She says, “Rehabilitation is important. But we you cannot rehabilitate someone until you diagnose and treat the underlying condition. Sending Long Covid patients to physiotherapists and occupational therapists and expecting them to get better with no medical treatment?”
She says, “I’ve said before that Covid and long Covid are vascular diseases. We have the evidence. We are still funding studies on whether CBT will cure people ?”
She says, “What's in a name? Quite a lot. Let me know your thoughts on whether the terms thrombotic vasculitis and encephalitis change your whole approach to long Covid.
Thank you.”
Tweet stream from Dr Claire Taylor on June 8th 2022
(https://twitter.com/drclairetaylor/status/1534659652901822465)
Covid is a vascular disease ?. We need to stop thinking of it primarily as a lung ? disease. I hear lung
Doctors says ‘we don’t see much on the chest X-rays in long covid’. The rheumatologists say ‘we don’t
see raised inflammation on the blood tests in Long Covid’
The cardiologists say ‘we don’t see much myocarditis in Long Covid and when we do it’s mild’. The
GPs say ‘ we see lots of odd chest pain after Covid but we don’t really know what it is’.
The media say ‘Covid is mild, long Covid is a mystery and we don’t know what causes it or how to treat
it’.
I say- Covid is a virus that causes vascular damage and inflammation. I say the ‘odd chest pain’ is not a
mystery and neither is Long Covid
Why do I say that? We now know that the blood tests we do in the NHS only show a tiny % of the
immune system. We are testing the wrong markers. In studies Interleukins and cytokines ARE raised.
Covid-19 causes inflammation. No mystery.
Why is it not on the front pages of the newspapers? Why hasn’t our health secretary mentioned it? Why
doesn’t your Doctor know about it? Why don’t they know that ‘normal’ bloods in Covid don’t test the
whole immune system and for microclots? These would be good questions.
Long Covid is a post viral illness. Therefore it has not surprised me today to see the pre-print showing
the same microclots in MECFS
https://www.researchsquare.com/article/rs-1727226/v1
This will not show up in blood tests done currently for MECFS or Long Covid resulting in ‘but your
bloods are normal’
Hopefully this thread might convince you Covid is more than a cold. That Covid causes vascular
complications.That doing the usual tests won’t show you the problem. That when you apply cutting edge
science to medicine you find answers.
‘Medical science has proven time and again that when the resources are provided, great progress in the
treatment, cure, and prevention of disease can occur.’
Michael J. Fox
Here is the work of Dr Sanjay Gupta in the UK explaining how periodic saline infusions provide relief to patients
suffering with POTS and with Long Covid.
The above was written on or around Wednesday 24th August. I finished the two week course of antibiotics for H-pylori on Tuesday 1st September. What follows is an account of recent developments.
I was not affected by the treatment for h-pylori in the same acute way that I expected from my experience with other experiments with medication, where one tiny dose had been enough to cause intense peaks of long covid symptoms which took up to 10 days to pass out of my body. I somehow managed to get through the gruelling debilitation of 14 days of very strong antibiotics morning and evening. However it is now more than three weeks since I finished the antibiotics and I am feeling extremely debilitated as a result of taking the antibiotics.
I have done considerable research in the past two weeks and have made two discoveries. One is the clear explanation by Dr Claire Taylor that long covid is entirely caused by Thrombotic Vasculitis and how it impacts each person's body differently depending on what prior predispositions each of us have. The point is that inflammation of the vascular system can affect any aspect and many aspects of one's health I have included Dr Clare Taylor's explanation below. One of the main symptoms that long covid people can have and that underpins extreme fatigue, is dysautonomia. I have also included Dr Sanjay Gupta's proposition of an alleviative treatment for dysautonomia below.
Now that I understand that I have had dysautonomia at least from the time I originally contracted the covid virus more than 29 months ago, I can say that the dysautonomia was seriously worsened by the h-pylori medication. Of course it is good to have cured the h-pylori condition, but I actually feel more ill now on account of the much increased inflammation that is signified by the intensified dysautonomia.
Here is the information I have put together from Twitter messages of Dr Claire Taylor showing her understanding of what Long Covid is about:-
"I find Dr Claire Taylor's insights into the nature of long covid very compelling, clear, and comprehensive especially as she explains brain fog and neurological issues in a way that is consistent with the views of Dr Jack Lambert (https://www.independent.ie/irish-news/news/long-covid-can-result-in-ongoing-psychiatric-issues-studies-have-revealed-41721264.html ) concerning brain fog and mental health challenges.
Below is a summary of her understanding taken from recent twitter posts she made in June. I would hope to see this perspective become the basis for our national long covid care and treatment program.
This seems to me to be the information and the perspective (both scientific and out of the box together) that GP's and consultants need to grasp before they deal with long covid patients. I wonder what our chances are of getting it out there.
Dr Claire Taylor
(https://threadreaderapp.com/thread/1535963941360345088.html )
excerpts:-
From twitter thread June 12th 2022
[#longcovid](https://threadreaderapp.com/hashtag/longcovid ) is covid related THROMBOTIC VASCULITIS.
thrombotic vasculitis is when the spike protein makes your blood vessels inflamed and form little clots that block small blood vessels #MicroClots I like evidence so here you go - https://portlandpress.com/bioscirep/article/41/8/BSR20210611/229418/SARS-CoV-2-spike-protein-S1-induces-fibrin-ogen
When your blood has little clots in it filled with amyloid it causes more Inflammation. Think of when you get a cut and the skin goes red and sore. That’s inflammation. Imagine that in your blood vessels. The oxygen in your blood then struggles to get to all the tissues.
Covid related thromobotic vasculitis puts you at higher risk of heart attacks and strokes after Covid. After all the blood vessels are inflamed. That’s what vasculitis means.Evidence - https://publichealth.jhu.edu/2022/covid-and-the-heart-it-spares-no-one
What about your brain? ? is that spared? Unfortunately not. It’s is invaded by [ #COVID19](https://threadreaderapp.com/hashtag/COVID19 ) with a resulting huge increase in inflammation. Some people call it ‘brain fog’ or ‘neuroimmune’. It is actually ENCEPHALITIS. Sounds serious, right?Evidence - ( https://link.springer.com/article/10.1007/s00415-022-11050-w )
(This is what backs up Dr Jack Lambert's focus on long covid as a neurological issue)
In medicine we have always treated thrombotic vasculitis and encephalitis seriously. Not left people at home and tried to rehabilitate them with no treatment.
The next time you see a patient with long Covid think of the pathology. Covid related thrombotic Vasculitis - and acknowledge the implications. Take it as seriously as the pathology suggests.
Would you try and rehabilitate and psychologicalise a patient with vasculitis or encephalitis? No you absolutely wouldn’t.
Rehabilitation is important. But you cannot rehabilitate someone until you diagnose and treat the underlying condition. Sending Long Covid patients to physiotherapists and occupational therapists and expecting them to get better with no medical treatment?
From twitter thread June 8th2022
Covid is a vascular disease. We need to stop thinking of it primarily as a lung disease. I hear lung Doctors say ‘we don’t see much on the chest X-rays in #longcovid’. The rheumatologists say ‘we don’t see raised inflammation on the blood tests in #LongCovid’
The cardiologists say ‘we don’t see much myocarditis in [#LongCovid]( https://twitter.com/hashtag/LongCovid?src=hashtag_click )and when we do it’s mild’. The GPs say ‘ we see lots of odd chest pain after Covid but we don’t really know what it is’.
The media say ‘Covid is mild, long Covid is a mystery and we don’t know what causes it or how to treat it’.
I say - Covid is a virus that causes vascular damage and inflammation. I say the ‘odd chest pain’ is not a mystery and neither is [#LongCovid]( https://twitter.com/hashtag/LongCovid?src=hashtag_click )
Why do I say that? We now know that the blood tests we do in the NHS only show a tiny % of the immune system. We are testing the wrong markers. In studies Interleukins and cytokines ARE raised. https://t.co/L1m204Y8PU [#Covid_19](https://twitter.com/hashtag/Covid_19src=hashtag_click )causes inflammation. No mystery.
Now to more exciting stuff. Covid causes micro clots with amyloid. Yes amyloid. They block capillaries and reduce oxygenation. Here is a photo of a patient’s blood before Covid and afterwards when they got [#LongCovid](https://twitter.com/hashtag/LongCovid?src=hashtag_click )showing new microclots
Covid is a vascular disease. If you want to learn more this is a brilliant paper. https://portlandpress.com/biochemj/article/479/4/537/230829/A-central-role-for-amyloid-fibrin-microclots-in
[@dbkell] (https://twitter.com/dbkell ) [@resiapretorius](https://twitter.com/resiapretorius )
Why is it not on the front pages of the newspapers? Why hasn’t our health secretary mentioned it? Why doesn’t your Doctor know about it? Why don’t they know that ‘normal’ bloods in Covid don’t test the whole immune system and for microclots? These would be good questions.
#LongCovid is a post viral illness. Therefore it has not shttps://www.researchsquare.com/article/rs-1727226/v1surprised me today to see the pre-print showing the same microclots in #MECFS This will not show up in blood tests done currently for #MECFS or #LongCovid resulting in ‘but your bloods are normal’
Hopefully this thread might convince you Covid is more than a cold. That Covid causes vascular complications.That doing the usual tests won’t show you the problem. That when you apply cutting edge science to medicine you find answers. #MedTwitter #LongCovid #MECFS #TeamClots
‘Medical science has proven time and again that when the resources are provided, great progress in the treatment, cure, and prevention of disease can occur.’ Michael J. Fox' "
[End of Dr. Claire Taylor tweets]
This research, https://www.medrxiv.org/content/10.1101/2022.10.13.22281055v1, just recently published confirms strongly that long covid is an inflammation based disease.
Here is a paper that is relevant to a possible way of looking at how depression arises as a response to stress.
"https://www.medscape.com/viewarticle/838376 "
Here is the work of Dr Sanjay Gupta in the UK explaining how periodic saline infusions provide relief to patients suffering with POTS and with Long Covid.
From https://drsanjayguptacardiologist.com/blog/a-potentially-transformative-treatment-for-pots-long-covid/
"A potentially transformative treatment for POTS/Long COVID.