For anyone interested in the pathophysiology of MECFS there’s a nice infographic here from this review article;

LOTS more research needs to be done of course.

In clinical practice the vascular dysregulation is something I very much recognise 🧵 jci.org/articles/view/…
Some of my bedbound patients have a raised blood lactate at rest, indicating that simply the energy required to stay alive has switched them into anaerobic respiration and oxygen consumption is outstripping supply 2/

On #WorldPatientSafetyDay, supported by 200 healthcare professionals, I have written to @wesstreeting in collaboration with #There4ME calling for urgent action to improve care for people with severe #ME and #LongCovid.
Our piece in the Times here ⬇️ 🧵

archive.is/XVxOt > 50 consultants, >70 GPs, nurses and AHPs have signed the letter in an unprecedented call to action asking for;

[1] Acknowledgement from the very top of government, that gaps in NHS services for ME are resulting in serious patient safety concerns, and commit to taking action.

In 2021, I went public with these images of my daughter’s platelets. One curious, brilliant paediatrician went away and tried to replicate findings in other children - 2 years later, here is his controlled study showing platelet hyperactivation in #longcovidkids 🧵

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

Danilo’s team took paired blood from a children with LC and healthy controls and processed them on the same day. They used flow cytometry to look at the platelets in a ‘resting’ state and when stimulated with compounds which should cause platelet activation.

A huge thank you to everyone who used their energy to travel to Manchester or Sheffield to take part in this study of #microclots in #longcovid

**Preprint, not yet peer reviewed**

Some interesting findings 🧵 1/

https://twitter.com/cazd45/status/1777348546380845441

Firstly, close attention needs to be paid to the methodology. This is not something that can be set up in any old lab (certainly not yet anyway) and samples need to be carefully processed by people who know what they are doing 2/

A 🧵for #SouthAsianHeritageMonth on why the campaign is needed.

I was told by a colleague and good friend (white middle aged man) that ‘I see racism everywhere’ and ‘by focussing on identity I am sewing division’. Also, that referring to him as a ‘white man’ is offensive (1/5) I wish the campaign didn’t have to exist but by the end of the conversation, I’d had every trope that people of colour face when talking about racism.
It was deeply upsetting to hear it from a friend, who would be mortified at the thought that he might have racist ideology (2)

Of all the things I thought I would do in my career, I didn’t think it would be getting involved with cases of children being denied life-saving treatment, or very sick children being removed by court order from their parents due to ‘factitious illness and FND’ 1/ I’m utterly horrified at what is happening to some children with #longcovid. History repeating itself - this has happened for decades to kids with #MECFS. These kids desperately need care and treatment.
When will the medical profession wake up? 2/

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/

I posted this in May 2021.

4 trips to Germany & 12 months of treatment, she has managed to do a handstand again (3 seconds!)

Not exercising yet, but otherwise able to live her life carefree.

With the right support and care recovery is possible (1/3)

#LongCovidAwarenessDay

https://twitter.com/binitakane/status/1391639263695962115

This was filmed just over a year ago (Jasmin from 3 mins), she has since started High School full time and had no time off.

This time last year she was largely housebound and needing a wheelchair for distance (2/3)

https://twitter.com/ruth5news/status/1490757951191142400

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 🧵)

https://twitter.com/Christina_Wood1/status/1613302212134076423

..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)

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.

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.

https://twitter.com/janeswim/status/1592284426721193984

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.

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/

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.

My husband has tested positive for COVID this week. The mystery of the ‘gastro bug’ we’ve had has been solved…mine and J’s LFTs were neg, but husband couldn’t have got it anywhere else other than the house 1/ On Monday he wasn’t feeling great but went to the school production. He was LFT neg but wore an FFP2 mask throughout. I also emailed school in the morning to ensure the doors would be open to ventilate the hall (they were). Hopefully no-one else was put at risk 2/

From a prominent figure in paediatrics, statements like this are deeply disappointing. There are thousands of families with #longcovidkids who are struggling. Many of us understand the symptoms kids are suffering as we have taken the time to ask, and we live & breathe it daily 1/

https://twitter.com/ShamezLadhani/status/1544366968286871555

Dr Ladhani claims survey data is ‘unscientific’, how else does one collect data on a large scale about symptoms where little other research currently exists? He is an author on the CLoCK study which based on survey data. Is that therefore unscientific? 2/

In May the @RCPCHtweets published an updated summary of 'key evidence for the effect of #COVID19 in children; rcpch.ac.uk/resources/covi…

This is the entire section on #longcovidkids, note the inverted commas 'Long COVID'. Three publications cited, 2 from 2020 and 1 from 2021 (1) The cited 2021 ISARIC cohort study shows 25% of children have persistent symptoms post-hospitalisation, with nearly 1:10 experiencing multi-system involvement. No studies in non-hospitalised children are included. Why? Let's look at how studies were selected (2)

To any new followers, you may see me tweeting about #southasianheritagemonth over the coming weeks. This is a passion project I co-founded with @jasvirsingh in 2020 🧵

TDLR: No one told me when I was growing up that my history was important. I want to change that 1/ In 2017 I took part in a BBC1 Docu called ‘My Family Partition & Me’. I was the first member of my family in 70yrs to go back to Bangladesh (then West Bengal) to the place where my father fled in terror from genocide & retrace my family’s footsteps 2/

I wanted to share a story of a patient I saw this week. Very fit man aged 52, previous marathon runner, suspected mild #COVID19 March 2020. Extensively investigated by cardiology in 2020 for symptoms of chest pain, dizziness and struggling to exercise 1/ Cardiac MR showed some fibrosis suggestive of previous myocarditis, but all other Ix were normal. By November 2021 he was back to running 15km, but very slow improvement. Dec 2021 had booster followed by COVID re-infection over a couple of weeks (again mild symptoms) 2/

After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had #LongCOVID for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
#longcovidkids Her fluorescent microscopy (left) showed very hyperactivated sticky platelets. Mine are on the right for comparison. She also had microclots and evidence of endothelial damage (but latter not severe). I believe she was the first UK child under 12 to have these tests done.

God it’s been humbling to be a carer and experience the NHS from the other side.
#LongCovid has shown me just how much our current ‘single specialty’ model of medicine is failing patients with chronic disease. I knew this before, but it’s hammered it home (1/4) Also interesting is the complete paralysis of health care professionals to be able to treat without an ‘evidence base’ or ‘guidelines’ in the NHS. All evidence starts with anecdotes and case series.
In a new disease we need a different more agile model of creating evidence (2/4)

Tonight we will be hosting the UK’s inaugural #PartitionCommemoration event in Manchester. It has never been more relevant to educate people about the past than now. This graphic by @MendoncaPen captures the discussion we had in Parliament & the complexities of this subject (1/5) #Partition was a defining moment not only in world history but British history. It has been called the holocaust for Indians, yet it is not acknowledged, spoken about or taught. We are hoping to change that with the campaign (2/5)