Dr Claire Taylor Profile picture
Doctor|Special interest in Long Covid,POTS,ME/CFS&MCAS| neuroscientist🧠Long Covid kids champion|WHN expert advisor|long Covid clinic🏴󠁧󠁢󠁳󠁣󠁴󠁿Views my own
Ross Grayson, MPH, CIH Profile picture Ekinnajay Profile picture Alisontomyradioantirecoveryactivist Profile picture Blue through and through Profile picture BendyHEDS&Co 🐴🦓🥄👩🏻‍🦼😷#NEISVoid#CleanAir🌍🕊 Profile picture 36 subscribed
Jun 10 11 tweets 2 min read
If someone is bedbound with #longcovid & hospitalised, withholding urine bottles will not make them walk to the toilet. They will wet the bed. Withholding feeding will not make them eat. They will starve.
Sometimes this job hurts my soul at the lack of human rights.#NHS If you are the consultant in charge don’t ask them why they ‘don’t want to get better’
If you are the nurse in charge don’t watch whilst your nurses torture the patient messing around with not feeding or toileting.

We NEED to talk about these things.
May 26 7 tweets 2 min read
According to Case, Vallance said there could be ‘lasting impact to children’ from
Covid. There is.
The number with long Covid has doubled in the past year.
Risk increases with number of infections.
How many Covid infections has YOUR child had?
Demand mitigations. Please. Just because ‘everyone else’ seems happy for their kids to be recurrently infected with Covid, doesn’t mean they are right.
Do some reading into the long term effects of Covid. @LongCovidKids is a good place to start.
May 18 27 tweets 6 min read
Patient to doctor
‘I can hear music playing in my head that isn’t there’
(Musical hallucinations caused by neurological damage)
Doctor ‘we don’t know much about it,go to a nightclub until 1am. Not 4am.1am. See if that helps.’
Patient with light&noise sensitivity from long Covid Telling a patient to go to a nightclub when they have a severe illness that affects their mobility and light and noise sensitivity could make their condition much worse and cause a permanent relapse.
May 18 25 tweets 6 min read
Patient to cardiologist:
‘I’d like to discuss POTS’❤️‍🩹
Cardiologist
‘No,there is FAR TOO MUCH POTS around right now. DO NOT google it. There is no treatment anyway’❌
Patient🤨

Oh my word
There is a lot of POTS around due to COVID wrecking autonomic systems
There IS treatment✅ This is my absolute pet hate.
POTS has went from rare to common.
Due to Covid. 🦠
It is extremely disabling.
It makes people exercise intolerant.
It gives people cognitive symptoms due to reduced blood flow to the BRAIN🧠
This person has to work lying down
Why can’t they ask?
May 13 15 tweets 4 min read
NHS staff with long Covid are now losing their jobs in droves.
Beware-on applying for industrial illness benefits, if asked if you filled your car with fuel, the application goes no further as you might have caught Covid from touching the fuel pump handle Even if you worked on a Covid ward&only went to work and back and used ‘pay at the pump’
This is how they are getting out of industrial illness benefits. Is there anyone trustworthy and honest left?
Tricking staff
With questions about filling their car up to come to Covid wards
Feb 15 17 tweets 5 min read
Long covid clinics are full of previously healthy people. 🧐
Where are all the
-rheumatology patients on DMARD or biological medication?
-diabetics?
-cardiac patients?

Are their medications protective for long Covid? A study in Scotland looked at some medications at time of Covid infection and found injectable anti-coagulants to be the only one that was protective.
But many meds they could not analyse for various reasons
We urgently need to look at them all. Image
Feb 12 12 tweets 2 min read
Long Covid is a disease that can be measured

Study
🔴113 long Covid patients,39 healthy controls
📢Result
long Covid patients had complement activation (component is first line of immune system), and increased vascular markers.
Long Covid is an inflammatory&vascular disease🩸 They used proteomics to analyse blood.

🔴LC patients exhibited increased complement activation during acute disease, which persisted at 6-month follow-up.

The complement system is part of the innate immune system&contributes to immunity by targeting pathogens&damaged cells
Feb 10 4 tweets 1 min read
Do we actually have an end game for a virus that rots bloods vessels and trashes brain cells? 🧠
It will still kill us, just much more slowly
⏰ ⏰ ⏰
We still have time to change the trajectory- but I suspect there is a point at which one cannot undo all those infections..🦠 We could be storing up:
Dementia
Parkinson’s disease
MS
Cardiac failure
Strokes
Heart attacks
Metabolic issues
Diabetes
Fatty liver
Raised cholesterol
Effects on eyesight
Autoimmune diseases
Damaged immune systems that can’t fight normal infections

And more…
Feb 2 10 tweets 2 min read
Throwing children with ME/CFS into water to ‘make’ them swim since they were adamant it was psychological. They did not swim. They nearly downed.
This is the murky history of #MECFS
And still there are those who insist ME/CFS is psychological.
HOW is this medicine? We may have stopped throwing children into swimming pools but not much else has changed. Those with #LongCovid are now going through the same thing with being told it is psychological and to exercise their way out of it.
How long will this continue?
Jan 21 14 tweets 4 min read
‘Anyone that was going to have long Covid has it by now’.
Nope. There is not a ‘type’ of person who gets #LongCovid that is wishful thinking.
There may be some susceptibilities but anyone can get long Covid.
I saw people throughout 2023 who had got
It after multiple infections Image The @StatCan_eng study showed long Covid increased by infection.
By infection 3, 38% had long Covid symptoms
That does not look like a graph showing the susceptible got it on
Infection 1 and everyone else was A-ok. 🤷🏻‍♀️ Image
Jan 16 18 tweets 5 min read
There has been many amazing #LongCovid studies recently I’ve just been mulling them over.
🏆 long covid patients get muscle NECROSIS with exercise.
N-protein in the muscles but ALSO controls.

We are going to find viral persistence everywhere, aren’t we?
No one wants to say it SARS-CO-V-2 representation. On the right is the nucleocapsid protein this is just N protein surrounded by RNA. On left whole virus with N protein in middle and membrane protein and spike protein on outside ‘Exercise-induced amyloid-containing deposit accumulation in skeletal muscle’

What???
Why on earth are we telling these people to exercise?
So they can destroy their muscle tissue and deposit more amyloid and feel terrible?
Jan 14 7 tweets 2 min read
Multiple potential causes of #POTS including autoimmunity, mitochondrial cytopathy, diabetes, B6 toxicity, sjogrens.
We are not doing a good job in the UK of investigating for these,the US is miles ahead.
Read for some root causes of #POTS Most people I see with (usually undiagnosed) POTS have got it after #covid
Covid seems to have a predilection for the autonomic nerves.
However, it was prevalent in #MECFS long before Covid.
Always check for POTs if symptomatic of post viral symptoms or ME.
Jan 13 16 tweets 3 min read
If cardiology refuse to see a patient&they then get a private diagnosis of #POTS should they have to pay £100 a month for medications forever because it was diagnosed privately?(when they had no choice.)
Help me out here This is different to the adhd situation since referrals are rejected by the NHS. So no NHS avenue.
Patients better on meds and back at work in tears because they can’t afford the medication.
Jan 11 9 tweets 2 min read
For those who say mast cell degranulation is not real I give you BASCULE syndrome.
19yo woman with POTS& gastroparesis
Developed itchy lesions on her legs associated with standing.

⚫️central urticaria-like lesions are secondary to mast cell degranulation induced by HYPOXIA
Picture of lower legs. They are purple with patches of white and urticaria
Image
BASCULE
(Bier anemic spots, cyanosis, and urticaria-like eruption) syndrome. prescribed 20 mg of loratadine once daily and she reported an improvement in pruritis.
Dec 31, 2023 11 tweets 2 min read
1/This year 2024 we up
The pressure.
No MBEs for disassembling infection control.
No more should we have to sacrifice health for work&school.
The masses are about to find out about reinfection.
And they are going to start asking questions
Some of us have the answers. 2/ and always have done
Reinfection is bad- 2022


We have been DESERTED and our families health is in dangernature.com/articles/s4159…
Dec 30, 2023 8 tweets 2 min read
I hope those reinventing the wheel have looked at POSTEXERTIONAL MALAISE &why this makes these ‘activities’ potentially dangerous for those with #MECFS & #LongCovid
A link to PEM- you may be next longcovid.physio/post-exertiona…
Even @nhsinform has written about it .nhsinform.scot/illnesses-and-…
Dec 23, 2023 5 tweets 1 min read
Jn.1 appears to be hitting different. 10% on ECMO in ICU is huge.
Increased transmissibility + increased immune evasiveness + increased severity is always worse case scenario we don’t want with acute Covid. Do we honestly think we can positively think it into staying ‘mild’? It’s not clear if more severe or more people just have it all at once. But keep spreading it like this and eventually, if not now, we will have a super variant. I really wouldn’t care what people did if it didn’t impact everyone else with their chains of transmission.
Dec 21, 2023 18 tweets 3 min read
Worst case scenario #longcovid for those who call it fatigue
-suddenly feeling extremely unwell 24/7
- needing to be in a darkened room all day with no light/sound
-having to give up your job in your 30s to move in with your parents

-your parents having to put you on a commode Trigger warning 🔴 next tweet
Dec 20, 2023 4 tweets 1 min read
Whilst watching Twitter argue over masking and ventilation, &media and government minimise Covid as a seasonal winter virus I want to highlight one thing. Ignore at your peril.

Long Covid patients are in hell, all day, every day, for years. 🔥

Don’t chance it. Risk is high. Image Merry Christmas.
Dec 19, 2023 4 tweets 1 min read
How on earth can we fix/improve the lives of patients with long Covid while they keep being reinfected?
This has been a week already of listening to story after story of reinfection.
I can only hang my head in sadness as there is absolutely nothing I or anyone else can do. I can post here, or warn people about Covid and long Covid, but with 1 in 30 infected again, god knows what wave of the year we are on, immune evasive blah blah blah, reality is someone somewhere is culpable for this.
Dec 16, 2023 10 tweets 3 min read
Can we have it all?

Christmas parties, indoors, unventilated?with sky high Covid levels?
I don’t think so.

US talking about RATIONING care.
This is what public health should be focusing on right now-reducing Covid levels to make sure there is a functioning health service Reminder- new subvariant JN.1- immune evasive.