Thanks to @StaceyPooleITV there’s been a focus on #LongCovidKids in the media this week.
Whenever @NHSEngland are asked for a statement re:Long Covid, it states ‘we have invested £X million’.
I want that taxpayers money to create value for patients, the system and clinicians 1/
Who is currently winning?
The patients? No
The healthcare economy? No
Clinicians? No
U.K. workforce? No
So let’s measure proper outcomes for those three things to ensure that money is being invested in the right place 2/
.@Sunny_Rae1 and I have talked a lot about this. We believe we Post-viral illnesses need to be defined as a specialty with clinicians trained in the underlying pathophysiology.
Patients are then seen by experts who can deal with multisystem issues, treat, support & monitor
3/
This is supported by;
(1) advice and guidance from single-organ specialists where needed.
(2) Therapists who are trained in managing PEM/autonomic dysfunction/pacing/HRV monitoring
(3) Other holistic therapists; dietician, psychology, SALT etc as part on one specialist MDT 4/
This is how many specialist commissioned services in the NHS work and have done so for years. Severe Asthma being an example of one I have lots of experience with 5/
This would achieve;
1. Better joined up, specialised, care for patients 2. Opportunity to have treatment trials supported by one team 3. Huge research potential 4. Sharing of expertise via specialist networks 5. Better value for taxpayers money.
6/
Is this achievable? Absolutely. It will take time but we need to start!
The problem continues to grow as more and more people develop post-viral illnesses.
#MECFS has been ignored for decades. I hope that #longcovid can drive change change in the right direction. END/
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Here’s a 10min talk I did for @TheWHN outlining her journey and how we got here.
Key points; there’s lots we can do with the right tests, expertise, courage & a leap of faith.
#TeamClots doing what we can to drive research. Making good progress 🤞🏽(3/3)
I endorse vaccines, I have personally had 5 mRNA vaccines, globally the impact has saved millions.
However, like with any good treatment an unlucky minority will suffer adverse effects. The support available to those is woeful. We need to understand adverse events (short 🧵)
..and understand why some people have a multi-system reactions.
For example, with the drug Azathioprine. Studying adverse events mean we now can check for a rare genetic mutation before starting it to prevent it from happening dtb.bmj.com/content/47/1/9 (2/3)
The politicisation of vaccines and anti-vax rhetoric means it’s very hard to have a sensible discussion about this. It’s harmful and prevents the work that needs to be done. Like everything that becomes polarised, it prevents progress.
While certain UK paediatricians close ranks and defend a misguided (or guided?) trainee in promoting infection and reinfection of children with #COVID19 as a means of building immunity, I would like to tell you the story of a young boy, who I will call Jack (not real name) 🧵
I have family consent to share his story. Jack was previously healthy with no underlying health issues. He developed typical COVID symptoms in Apr 20 aged 9, and never recovered. After 18 months of being unable to tolerate an upright position, he was finally diagnosed with POTS.
Over the following year he had a lot of input from the NHS and had some treatment for POTS, despite this he was managing only a few hours at school.
The stuff they don’t teach us at medial school!
Cold water therapy reduces inflammation, improves mental health & cardiovascular fitness.
Plus a great way to meet people and be outdoors.
Would love to do some research on effects in #LongCovid, anecdotally some great results.
Breathwork session using a modified Wim Hof breathing method before going for a dip - Wim Hof is designed for health and can be a bit much for longhaulers, so Jane has changed it to slower breaths and reduced breath holds.
Breathwork & cold showers are a way of gaining some of the benefits for those who are too poorly to do this outdoors.
The brilliant @MedCrisis did a video in 2019 critically appraising the science on the Wim Hof method (it’s long but worth a watch!) ⬇️
Very interesting story of Dr Alice Stewart and Sir Richard Doll.
Dr Stewart first discovered the association between X-raying pregnant women and the risk of developing childhood cancer. Her work was ‘debunked’ by a prominent epidemiologist Sir Richard Doll /1
Dr Stewart doubted herself but the evidence was there loud and clear. The damage that Doll had done with opposition took years to unravel. Meanwhile thousands of childhood cancers could have been avoided.
Why? ‘Her findings undermined the prevailing mental model of disease’ 3/
‘She had to be wrong. If she was right, too many other assumptions had to be re-examined.’
‘What Dr Stewart had provoked in her scientific colleagues was cognitive dissonance: the mental turmoil that is evoked when the mind tries to hold 2 entirely’ incompatible views’. 4/
Schools Unions have written to The Secretary of State outlining an urgent need for a summer action plan to prevent a winter of disruption due to #COVID19 in schools. Measures they are calling for are; 🧵
1/ Provide additional funding to schools to improve ventilation.
This will help not only reduce spread of #COVID19 but also reduce the impact of #airpollution which is harming our kids' health in multiple ways.
2/ Provide HEPA air filtration devices to all schools for September as an immediate measure while schools improve their ventilation.
Sensible strategy as improving ventilation takes time and we need to keep children safe in the interim.