Thread by @drclairetaylor

1/Important 🧵
How many people have been damaged by Covid?
We don’t know. Not a clue.
We know ‘ long Covid’ stats in UK up to 2022- 2 million

But we are MISSING something
Illnesses caused by Covid but not called ‘long Covid’
we have NO IDEA how many
🔴Read on-it may affect you

2/ ‘ long Covid’ definition

‘continuation or development of new symptoms 3 months after the initial SARS-CoV-2 infection, with these symptoms lasting for at least 2 months with no other explanation. ‘

3/Symptoms of long Covid

While common symptoms of long COVID can include fatigue, shortness of breath and cognitive dysfunction over 200 different symptoms have been reported that can have an impact on everyday functioning.

4/ok so we got that bit.2 million in 2022. How many now? 4 million?
Factors affecting numbers
-They have to be coded by a doctor, the code is hard to find🤷🏻‍♀️
- you don’t need a positive Covid test but once testing stopped, they started being coded as post viral fatigue instead

5/without a positive test after 2022 it’s hard to say it’s long covid as flu&other viruses increased
- in hospitals testing was hugely reduced. If someone had pneumonia from
Covid it could be coded as plain old pneumonia 🫁
🔴so all those people above are also not in the numbers

6/ who else isn’t in the numbers?
- long Covid as a syndrome does not cover the angina or heart attack caused
by Covid. Covid doubles the risk of a heart attack for at least 18 months after Covid
- it does not cover the stroke after Covid, that risk also doubles 🧠

7/ blood clots. Sometimes diagnosed years after Covid, often due to not being taken seriously. Risk increased by Covid 🩸
- autoimmune diseases- risk increased 172% by Covid
Includes
Rheumatoid arthritis
Psoriatic arthritis
Lupus
Undifferentiated connective tissue disease

8/Sarcoidosis
Vasculitis
Graves’ disease ( thyroid)
Addisons disease
Type 1 diabetes
And many others
🔴 not counted or coded as Covid related

9/ people say
‘But I don’t know anyone with long Covid’🤷🏻‍♀️
Are you sure you don’t know anyone like the above?
The problem is without the test for Covid, the heart attack in the 39 year old with no risk factors for it is never linked ( yes I’ve seen people in their 30s like this)

10/ immune system dysfunction
- people who are falling sick constantly with things after Covid. Even though they don’t know they have had Covid
- mycoplasma
- respiratory syncytial virus
- whooping cough
- flu
- Epstein Barr virus
- shingles ( varicella zoster)

11/- bacterial infections
- in severe cases fungal infections
- TB is the increase
- constantly sick children
🔴 these are not counted or coded as due to Covid

12/Autonomic dysfunction
-Can occur as part of a long Covid syndrome with other symptoms but also on its own..
- how many people say after Covid that their resting heart rate has increased?
Their heart rate is higher on exercise? 🫀
-their feet are purple on standing

13/POTS is a fast heart rate on standing. But also feeling sick, sweaty, dizzy on standing
-Purple feet standing or after a shower
- about 3/4 of patients I see are UNAWARE they have POTS
So are their drs…
🔴 these are not counted or coded as being due to Covid

14/Allergies. We need to talk about the huge increase in allergies post Covid.
- new allergies to foods that seem random, hair products, chemicals, worsened hayfever, hives, rashes, intolerance of alcohol.
🔴 do you perhaps know someone like this? Not coded or counted.

15/When allergies combine with other symptoms and are impacting on function it may be mast cell activation syndrome (mcas). Since it’s hardly accepted by doctors it’s not likely to be coded🤷🏻‍♀️
🔴 maybe instead of ‘long Covid’ you know someone with new allergies/hives/etc

16/Migraine. Common after Covid. Existing migraine can be made worse or people suddenly get new
Migraines
Studies suggest inflammation in the brain.
‘47% of patients have gone on to develop a headache following a COVID infection.’
🔴 not Coded or counted as related to Covid

17/A big one-
Worsening of pre-existing illness
- autoimmune diseases suddenly not controlled on normal medications
- Angina that was stable now unstable
- allergies that were mild so bad that people cannot function
- mild PoTS, now unable to stand up
- worsening of ME/CFS

18/🔴 worsening of pre-existing illness is not coded or counted as related to Covid. Worsening Could be anything from an inconvenience to needing rapid intervention to stabilise the underlying condition with multiple medications

19/ADHD, anxiety, depression
- some people present like new ADHD after Covid, some known ADHD worse
- new anxiety& depression
- in children PANS/PANDAS
( neuropsychiatric symptoms secondary to virus or Bacteria)

20/🔴these don’t fall under the term ‘long Covid’ but if they follow a Covid infection they may be related.
Does YOUR brain feel ok after Covid? Studies show our IQ is dropping&brains shrinking, increase in dementia&parkinsons.
Maybe you know someone like this?
🔴not counted

21/Paediatric inflammatory multi-system syndrome (PIMS)
🔴 you’d think as it’s a life threatening illness in children following infection it would be counted right? Wrong. I know of cases even with a positive test that didn’t even get treatment or their symptoms related to Covid

22/Myocarditis/pericarditis
Inflammation of the heart muscle/lining.
That should be easy enough? No. People often told it’s anxiety/muscular. The test needed is cardiac MRI. Most patients have had to get a private MRI.
🔴1/5 patients with long Covid had it in 2020 study

23/ I’ve seen cases where the household has Covid. The patient has symptoms of Covid. The patient has myocarditis but negative Covid test. Common sense would prevail right? Clearly it’s Covid. 🤷🏻‍♀️
🔴 nope. ❌Diagnosed as myocarditis of unknown cause. Not counted yet again.

24/ People who have cognitive dysfunction and fatigue being diagnosed as peri-menopause or depression.
They don’t know they had Covid because there are no tests. 😵‍💫They had that ‘thing that was going round at Christmas’ &not right since
🔴 not counted or coded as Covid related

25/ So, if you think you don’t know anyone with long Covid-think again.
With no testing& or linking anything to Covid, my best guess, & only a guess, is perhaps 10 Million people affected.

We have 30 million working adults in the UK.
This is a mass disabling event.
Take care

26/ and yes, all of these diseases existed before Covid.
Heart attacks, strokes, blood clots, type 1 diabetes, autoimmune disease, dementia, irregular heart beats etc
BUT it’s the increase in prevalence& relation to Covid infection temporally that is important
Contd

26/If we are not testing and not counting and not measuring this increase in prevalence over the population we are blind.
We are sleep walking into mass chronic Ill health.
If you think the only thing that can happen after Covid is ‘long Covid’ you are mistaken.

27/ this is why people like me who see the fallout and can match the Covid like illness to the new health problem are so alarmed. There is no term apart form post-Covid sequelae that covers this. The only place I’ve seen the term used is in research papers.

28/ I can’t tell you if your parent would have got dementia etc anyway or Covid caused it.
I can probably link the POTS or myocarditis to the infection.
For many it is not an individual answer but a population answer.Without measuring it, it looks like we don’t have a problem.

29/ Houston, we definitely have a problem 🚀 🌍 🤒 🫀🧠

If anyone has any more accurate estimates, please comment. Actuaries may know, epidemiologists may know, but I don’t think anyone could possibly count the scale of the problem with the information we currently have.
If ever there was a reason for testing for Covid, this is it.

It’s time we thought of
‘Long Covid Plus’
People may not have fatigue or malaise.
They may have an irregular heart beat after Covid.
They don’t meet the criteria for long Covid as above.
But they have illness caused by Covid. That’s got to have a name. We need to give it one

End of extremely long thread which could be 5x the size of this if there was space.
This is why I don’t want to catch Covid and will take measures to prevent that.
It’s worth it.

Please do add your own Covid stories- be it your own health or that of relatives or friends. Whether they actually had a test or appeared to have a Covid like illness before their health issue that doesn’t quite fit into ‘long Covid’

https://twitter.com/drclairetaylor/status/1814890428665070069