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Binita Kane

@BinitaKane

Sep 29, 2024

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/

In less severe patients my colleague and friend @robinthephysio is finding reduced lactate thresholds, with patients switching from ‘green’ (aerobic) to ‘red’ (anaerobic) at low effort and heart rate levels - a key cause of PEM/PESE the cornerstone symptoms of ME
3/

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Binita Kane

@BinitaKane

Sep 17, 2024

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.

[2] development of an ME Clinical Taskforce to provide emergency specialist guidance in cases where patients are hospitalised, and drive forwards improvements in NHS treatment and care (including managing risks of malnutrition)

Read 7 tweets

Binita Kane

@BinitaKane

Jul 21, 2024

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

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.

They found that in LCKs, platelets were activated in the resting state (ie when they shouldn’t be).
This means that blood is in a ‘coaguable’ (pro-clotting) state in these kids.

Read 14 tweets

Binita Kane

@BinitaKane

Apr 8, 2024

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

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/

After 3 years of painstaking work Prof Dalton @cazd45 and team have developed a method to automate the counting of microclots. This is a good thing as it reduces the manual work involved and will help to standardise results and in time scale up testing 3/

Read 12 tweets

Binita Kane

@BinitaKane

Jul 22, 2023

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)

There is a big difference between conscious racism and the deeply ingrained, hard-wired thinking that develops from living in a society where structural racism exists.
Campaign like ours open up a space for these conversations (3)

Read 7 tweets

Binita Kane

@BinitaKane

Jun 26, 2023

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/

How many more children and young people need to die before action is taken? It’s one of the biggest scandals in medical history and no one talks about it within medicine. It’s devastating to walk with the families going through this 💔 3/

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