💙CJ 💙

NHS worker living with Long Covid trying to get well and avoid reinfection 🤞🙏

[Ivan l'Africain @AlterIvan1]

Today we lost yet another member of our Long Covid, ME/CFS community.

Faraz taught many patients in the community how to manage their new symptoms.

At least I will be grateful for that, despite the limited energy and time he had, he helped me too. 💙

[💙CJ 💙 @LCsucksbigtime]

@ONS Think you changed the goal posts @ONS

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

EXCESS DEATHS

In week 49 2024:
▪️Expected deaths: 12,509
▪️Actual deaths: 11,522

In week 49 2023:
▪️Expected deaths: 11,102
▪️Actual deaths: 11,318

They’ve raised the baseline of expected deaths by 13% since this time last year!

No wonder there’s no excess… 🤯

[Harry Boby @HarryBoby4]

I’ve had #LongCovid symptoms for over 4 years now.

Here’s what I’ve learnt:

‣ Health is all that matters
‣ Being present > being productive
‣ Money means nothing if you can’t use it

All it took for me to learn this was a life-changing illness.

In many ways, these years have truly been a blessing.

The foundation of any life, is having good health.

If you:

→ Have a clear & unfoggy head
→ Can exercise and feel good after
→ Have healthy family and loved ones

Then you really have everything for an incredible life.

I would happily live on nothing if it meant I could run without feeling flu-like, and relax without palpitations.

As I’ve got better, I’ve reclaimed that hunger to work & build, which I’m incredibly grateful for.

But I always bear in mind that it all means nothing if I don’t feel well.

It’s a statement thats thrown around, but not always conformed to.

But health really is the priority. ☘️

[💙CJ 💙 @LCsucksbigtime]

@AdamMeakins And I think this has all been handled atrociously and the HCPC doesn’t seem at all
Fit for purpose, I am sorry this has happened again 😔

[💙CJ 💙 @LCsucksbigtime]

@AdamMeakins I know but I bet a big percentage do

[💙CJ 💙 @LCsucksbigtime]

@AdamMeakins @AdamMeakins so if there is 55K Physios in the uk, and u have 100k followers what percentage of your followers are Physio’s ? U could in theory have 100% of uk physios following you and thus will never find one to sit on the HCPC panel and be “impartial” 🤔 just a thought , x

[ThePOTSPostman @ThePOTSPostman]

People will often forget the type of person/worker you were before your chronic illness took over your life, they don’t realize that you are the same person but limited by an illness you can’t control.

I was always that go to person at work before I got sick. I would come in on my days off, do overtime, always help when help was needed.

I always came to work. Never called out. I was a reliable employee.

That all changed once I developed a chronic illness.

At first people were empathetic with my situation, but then I stopped doing overtime, I stopped coming in on my off days, I started calling out sick…a lot.

Suddenly everyone’s tone shifted towards me.

“He’s lazy”
“He doesn’t want to help out”
“He’s selfish”
“He doesn’t look sick”

Once I wasn’t able to give people what they wanted, I became useless to them.

Truth is, I’m still that same hardworking person, just limited by an illness I never asked for.

[Paula McGowan OBE @PaulaMc007]

#Oliverscampaign
I have woken today in deep pain I don’t need to look at the calendar It’s 7 yrs today that Dr Monica Mohan administered Olanzapine against everyone’s advice causing OLIVERS brain to be on fire & swelling. I am so, so sorry Oliver

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

This ⬇️ is indeed the crux of the problem.

Those with Long Covid, particularly the most severe cases, just drop off the radar. They become invisible. 🫥

[Alan Barnard @alanbarnard1]

Dominic Cummings @Dominic2306 knows. Look at his tweet below and read the thread he quotes.

This is going to be the biggest scandal in the country's history and a lot of people are currently seeking to cover their backs.

One day a journalist will get on it as well...

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

COVID INQUIRY

I’ve posted a number of tweets from the Inquiry hearing on 16 Sept.

This was the day that Dr Lisa Ritchie took the stand. She chaired the IPC Cell which wrote the Covid infection control guidance for UK hospitals.

I’ve collated all the tweets in this thread 🧵

[Cat in the Hat 🐈‍⬛ 🎩 🇬🇧 @_CatintheHat]

In this clip, Dr Lisa Ritchie explains how, even today, despite all the evidence to the contrary, she STILL believes that the predominant mode of transmission for Covid is droplet & contact.

(Reminder: Dr Ritchie is still the Head of infection prevention control for NHS England)

[Jamie Taylor @JamieTaylor666]

@drclairetaylor has got the job of Specialty Doctor for NHS Doncaster with a fantastic team in the Long covid clinic. (Alongside her own work in Scotland) ⭐️⭐️⭐️👏🏻

[Stephen Griffin @SGriffin_Lab]

Well, whoda thunk it??? 🙄

[💙CJ 💙 @LCsucksbigtime]

@Silas33 Belief , not having to fight to be believed , insurance payout like other conditions ,

[💙CJ 💙 @LCsucksbigtime]

@Silas33 Mine is 1st sept next year so guess I will get one soon too!
Crazy to do it so far in advance cause who knows how we will be in a year 🤯

[ThePOTSPostman @ThePOTSPostman]

This is by far one of my favorite explanations of POTS.

Whenever someone asks what it’s like, I tell them this quote by Dr. Jeffrey Boris, a pediatric cardiologist at Children's Hospital of Philadelphia

"To imagine POTS for yourself: number one, fast for 24 hours; number two, donate a pint of your blood; number three, go home and turn your thermostat up to 100 degree, number four, stand motionless. Enjoy the symptoms"

[Joshua Leisk @joshual_tm]

A new paper:

“Childhood neurodivergent traits, inflammation and chronic disabling fatigue in adolescence: a longitudinal case–control study”

https://t.co/3rOxWVP9Gs

Another prediction of my disease model is that neurodiversity is an early stage of the biofilm-related energy metabolism alterations.

https://t.co/GbQnJCdLZr

The pathogenic biofilm growth is accelerated by frequent exposure to (viral) antigens, distracting the immune system from suppressing microbial proliferation / planktonic stage and biofilm surface area expansion (see image).

This mitochondrial dysfunction before critical developmental periods induces elevated lactic acid metabolism, leading to enhanced neurogenesis (and myogenesis, with exertion). It is both a blessing and a curse, depending on the circumstances.

https://t.co/A84sL8psXi

However, this lactic acid metabolism comes with elevation of endogenous oxalate production (lactate dehydrogenase elevation also converts glyoxylate to oxalate).

https://t.co/AwPZweKWA8

This dysbiosis cascade also creates aldehyde metabolism impairment.

https://t.co/w1XsOxOfuI

Once the mineral deficiency profile reaches a dysfunctional level, with particular focus on zinc, copper, selenium, manganese and iron (chromium, iodine, etc also important), the energy metabolism and oxidative stress becomes significantly problematic. The immune system becomes further compromised.

All that is required is a catalyst event (virus / viral reactivation, various drugs, etc) that creates lactic acidemia and kills off the bifidobacteria, etc. to push someone rapidly into ME/CFS criteria.

A slow progression is also possible - all of these issues appear in aging populations, too. We’ve historically thought of that as “normal”.

Variables inside the cascade control feature presentation and severity, eg. PEM, POTS, MCAS, fatigue, renal dysfunction, collagen synthesis issues, gut and other mucosal tissue issues, cortisol dysregulation, cholesterol elevation, B6 elevation, glucose metabolism impairment/ insulin “resistance”, sleep disorders, neurotransmitter homeostasis dysregulation, muscle tremors and activation issues, chronic viral reactivation issues. This is not an exhaustive list - just some of the highlights.

https://t.co/2pploB481r

As our pre-clinical data shows, getting people back out of that state is also possible by addressing these issues.

Trials are now being drafted and funded.

[💙CJ 💙 @LCsucksbigtime]

@Silas33 Oh crikey !
I bet mine will come soon too!
When does your current award last till out of interest?