Just a reminder that PoTS hardly every presents with dizziness.
Most people I see don’t know they have PoTS.
The symptoms are usually mixed in with the fatigue/PEM/&everything else. Particularly associated with brain fog.
A clue is preferring to be horizontal.
Easy to Test Drs or healthcare providers please get patient do to a stand test ( if safe, always with someone present, with somewhere to sit down immediately if needed).

batemanhornecenter.org/wp-content/upl…

On the 2022 child hepatitis outbreak.
If there is even a hint that it is Covid related it should lead to immediate changes in what we are doing with Covid in kids.
Hepatitis is no joke. It is a child’s liver inflamed and can lead to multi organ failure.
These are children.

https://twitter.com/Globalbiosec/status/1866550694137958683

‘suggests that paediatric hepatitis of unknown cause is likely to have been related to postinfection inflammation. This may have involved complex causal pathways, involving SARS-CoV-2 infection&/or AAV-2 infection or reactivation in genetically susceptible hosts…

This is the woman who said in August 2020 that ‘children were more likely to be hit by a bus than CATCH coronavirus’.
Not only did they catch it, but 16% get long Covid.
When asked when parents were warned their kids could in fact come to harm, she did not answer the question.

https://twitter.com/longcovidkids/status/1854218282099740766

In her answer to the UK Covid inquiry she instead said that only a ‘small’ number of children come to harm and waffles about outcomes in the elderly.

ME/CFS Patient: I’ve been fainting or nearly fainting for 10 years.
Me: has anyone stood you up and done pulse/BP readings.
Patient: no 🤷🏻‍♀️
➡️Lay patient down- pulse 65bpm BP 120/80- nice.
Stood up-9 mins in
Patient: ‘I feel faint& sick’
Pulse 140bpm BP 70/50
🤢🤢🤢🫀🫀🫀 In a hospital a BP of 70/50 would have alarm bells going and half the medical team running to the patient. ‼️ 🛎️

POTS: postural orthostatic tachycardia syndrome.
Pulse increase of over 30bpm on 10 mins standing/tilt test
🔴 we need to get away from such rigid thinking.
🟢 home monitoring of pulse/BP/symptoms will give a lot of valuable information on the problem and treatment I’ve seen POTS as described above.
But also people who have a stand test that doesn’t quite meet the 30bpm criteria but everytime they do anything ( eg walk to the toilet) they have a pulse of 130bpm.
Should we just leave them like that? Of course not.

This is an extremely valid point.
I have been raising this for 2 years.
Your Dr calculates your 10 year cardiovascular risk using a calculator with age/blood pressure/BMI/cholesterol etc.
if over 10% a statin is offered.
HOWEVER Covid doubles cardiovascular risk for 3 years.

https://twitter.com/88hrx/status/1850930510878683435

cks.nice.org.uk/topics/cvd-ris…

‘Children aren’t at any significant risk’ from Covid.
This is the dangerous messaging that has come through from government @wesstreeting @GwynneMP
Resulting in abuse of any doctors who tell the truth.
Children are at significant risk from long Covid.

https://twitter.com/permagardenet/status/1850411311588343970

Having seen many children with long Covid, lives in tatters ( if it happens before or mid A-level they have no exam results even if very intelligent). They are lost amidst a health service with little help. The worst are bedbound with tubes for feeding.

The realisation that after Christmas we go into the 6th year of the Covid-19 pandemic. 🙁
One that currently looks like it could last a lifetime if we do not actively do anything to reduce transmission, mutation and infection. No one knows how many times they have been infected due to asymptomatic infection.
Remember, covid doesn’t need to cause symptoms to cause damage

Another big wave of Covid.
So are we still playing survival of the fittest?
Or have we actually just given up protecting ourselves, including our children.
A child born today can expect 12 Covid infections by the end of primary school if infected once yearly. Survival of the fittest won’t work. For that to work the fittest survive and pass on their ‘strong’ genes. Young people mostly don’t die from Covid so all those genes are still being passed on.

Study of 5000 healthcare workers
33.6% have symptoms meeting NICE criteria for long Covid.
Only 7.6% have a formal diagnosis.
That means 1/3 of healthcare workers are going to work feeling unwell
I suggest someone protects them with FFP3 masks& ventilation ASAP.

https://twitter.com/bhanlon15/status/1843321872903229753

Before we have no workforce left to look after the population, as they also get damaged from long Covid.

When someone talks about losing a child what do you automatically think?
Cancer?
An accident?
Probably not ME/CFS, ‘chronic fatigue.’ right?
& not whilst professionals simply watch it happen.
So much damage done by everyone who has laughed about these patients.
ME can kill.

https://twitter.com/swastrosarah/status/1840957100635144484

Maeve was not the first.
She will not be the last.
Patients with ME/CFS can lose the ability to chew and swallow. It is a neurological disorder. Yet there is no plan for if this happens. Still.

* very important study results*
- patients with long Covid with normal CTPA ( scan looking for pulmonary embolism) found to have abnormal lung perfusion ( blood supply) on VQ scanning
-shortness of breath is one of the most common symptoms in long Covid





Many patients have not been given an explanation for this shortness of breath
- many still drop their oxygen levels 5 years on and have no reason or treatment
- we have long suspected this is a problem with blood vessel damage
- it has been difficult to get this message out

Absolutely blown away to be shortlisted as a finalist for this for the 2nd year in a row.
The most asked question I get is:
‘WHY do to you want to treat long Covid?’
That the judges recognise the WHY (rather than me) is what’s important.
That long Covid deserves treating

https://twitter.com/gp_awards/status/1834222075432579233

-That long Covid patients deserve care as much as anyone else
- that 5 years in saying ‘we don’t know much about long Covid, it will probably go away’ is not acceptable to patients
- that anything possible that may help quality of life should be offered and discussed

*Important press release by COVID-19 Airborne Transmission Alliance (CATA)

Next week public hearings commence for Module 3 of the COVID-19 Inquiry
➡️focus on the experience of healthcare during the pandemic
Will it be a reckoning for those responsible for the deaths/disability? 2/Proportionately, the UK reported a higher death rate of healthcare workers in the initial phase of the pandemic than almost anywhere in the world. Why?
➡️ module 1 already found we were prepared for the wrong pandemic. One that was not airborne.

A fascinating 2019 study. Humans can detect sickness from facial expressions 2 hours after induction of systemic inflammation.
It’s a behavioural defence to avoid becoming sick.
So what the heck has happened with Covid& people not at all attempting to avoid it? 🤷🏻‍♀️ I think the need to ‘fit in’ outweighs the survival instinct in humans.
Years of propaganda has undone Millenia of evolution.

sciencedirect.com/science/articl…

Working on conditions that no one else wants to has taught me one thing:
The problem is the deep seated belief that being sick is a choice or personal failing. Especially women.

No guideline will undo this.
A socialised health service allows this to continue to be propagated. There is no choice about who people see and what opinions they hold.
Whole teams of people think like this.
Patients suffer.
By the time I see them they often have medical PTSD.
I don’t understand a healthcare system that traumatises patients.

A friend is in hospital.
BP 80/40 (read as very bad).
Sepsis&dehydration.
Immunocompromised so wearing a mask.
A nurse told her the cause of her dehydration was the mask.
This is not good enough.
It’s not only wildly untrue, it’s patient blaming She is attempting to not add Covid to her already life threatening issues.
This is not ok in healthcare to comment on people wearing a mask for their own safety.
And for any naysayers- airborne Covid has been isolated from hospital rooms

news-medical.net/news/20230419/…

Had a conversation with a relative today.
Them ‘it’s great we are beating Covid’
Me ‘unfortunately we are not beating Covid’
Explanation from me ensued.
Puzzled look from relative 😲
‘but why does the news (points to TV) tell us it is?
Me 🤷🏻‍♀️
@BBCNews @itvnews @Channel4News Relative
‘at least things are good enough that we don’t need masks.’
‘At least we can do things and we won’t catch it’
‘At least we don’t have to worry about the kids’….

Fascinating B12 study
- it looked at a patient with neurological symptoms with normal blood test for b12
- analysis of spinal fluid showed non existent levels
- antibodies found that stopped B12 entering the central nervous system
- study extended to more patients Contd Some with the antibodies to CD320 receptor had B12 deficiency and some didn’t.

Study on children with long Covid.
PLATELETS found to be in the activated state.
🔴Haematologists this may interest you: long Covid is a vascular disease. 🩸

🔴Platelets are not only involved in stopping bleeding. They are an important part of the immune response.
Cont

https://twitter.com/surf4children/status/1813658806204989951

Platelet activation may both contribute to endothelial dysfunction or represent a systemic inflammatory condition.
Viral persistence studies have suggested this to be a potential cause.
Covid was found to infect megakaryocytes and platelets. 🦠

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. ‘