iiinova — where your digital self keeps evolving

Binita Kane @binitakane.bsky.social · 23/09/2026

Every now and again it’s great for clinicians and researchers to meet and ‘chew the cud’. Fantastic to see Prof Chris Ponting and meet some of his incredible team in Edinburgh today.

Picture of Dr Binita Kane and Prof Chris Ponting smiling into the camera, with Arthur’s Seat (Edinburgh) in the background

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Binita Kane @binitakane.bsky.social · 14/05/2026

It was a pleasure to meet with Tracey Williams at the Welsh Government offices in Cardiff to discuss the possibility of all-Wales service for ME. With her background in nursing, Tracey truly ‘gets it’ and the conversation was refreshingly honest.

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Binita Kane @binitakane.bsky.social · 27/03/2026

In Belfast. Looking forward to this patient-led meeting of minds to push forward change for people living with chronic complex post-viral illnesses. #longcovid #MECFS

Collaboration for Change poster: experts and advocates shaping the future of ME and Long Covid. Image shows speakers; Dr William Weir, Prof Tom Trinick, Dr Binita Kane and Prof Chris Ponting

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Binita Kane @binitakane.bsky.social · 03/10/2025

The one thing Manchester is good at is showing love and unity when sh*tty things happen. Really proud to see the reaction of different communities coming together in solidarity against hate.

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Binita Kane @binitakane.bsky.social · 22/07/2025

I’ll be on BBC Breakfast at 7.15am talking about the publication of the Final Delivery Plan for ME, alongside @swastrosarah.bsky.social

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Binita Kane @binitakane.bsky.social · 15/07/2025

We have a very long way to go. This issue was covered in the iPaper and Times last year.

Newspaper article by Jessica Rawley in the Times ‘parents accused of faking their children’s Long Covid’.

Headline ‘it destroyed us’ Parebts of children with Long Covid accused of making it up.

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Binita Kane @binitakane.bsky.social · 15/07/2025

My understanding (I am not an expert on this subject) is that FII is extremely rare. Yet allegations of FII are rife against families of children with disabilities. This issue particularly affects those with Long Covid and ME. See this report ➡️ cerebra.org.uk/wp-content/u...

Excerpt from Cerebra.org report showing high levels of allegations of FII, more likely if parents are disabled and the harm it causes to families.

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Binita Kane @binitakane.bsky.social · 15/07/2025

More alerting signs - education is interrupted, parents insist on children having medication in school, child may adopt ‘unnecessary aids’ such as a wheelchair.

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Binita Kane @binitakane.bsky.social · 15/07/2025

This slide highlights that mothers are almost always the instigators of abuse, Dads variably involved. Note also wording about parents somehow gaining from their child’s illness and ‘erroneous beliefs about their child’s health’.

Wording on slide ‘Evidence tells us that the mother (or female caregiver) is nearly always involved as the instigator of FII and that the father’s involvement is variable.

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Binita Kane @binitakane.bsky.social · 15/07/2025

Guess what - you need to ‘select all’ to get this answer right. These ‘abusive parents’ won’t accept reassurance that their child is fine and may seek alternative medical opinions.

Multi choice Q: A a parent does not accept reassurance about their child’s health B A child does not respond well to prescribed medication C a parent continually seeks medical opinions D a child’s presentation does not match reported symptoms.

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Binita Kane @binitakane.bsky.social · 15/07/2025

Other suspicious behaviour - suggesting a child reduces PE or eats a specific diet.

Slide with boxes, one showing ‘Maria instructs her daughter’s teachers to limit her PE and insists on a specific diet without any medical reason’.

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Binita Kane @binitakane.bsky.social · 15/07/2025

I did my safeguarding level 3 mandatory training this week on FII (Fabricated or induced illness - seen as a form of child abuse) and PP (perplexing presentations) i.e. symptoms that don’t make sense to paediatricians. Look at the symptoms that these ‘abusive’ parents may report.

A slide showing boxes with multiple symptoms and traits commonly seen in post-viral conditions eg allergies, ADHD, sleep problems.

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Binita Kane @binitakane.bsky.social · 23/06/2025

So good to spend the day with @profmarkfaghy.bsky.social and his incredible team at the University of Derby plotting #LongCovid research. So much we could do if only we had the funding….

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Binita Kane @binitakane.bsky.social · 05/06/2025

Nice poster from Rob Wust and colleagues showing micro vascular dysfunction & basal membrane changes in skeletal muscle in ME and Long Covid. Reduction in oxygen & nutrients to muscle tissue contributing to fatigue and PEM.

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Binita Kane @binitakane.bsky.social · 23/05/2025

Our global effort to raise the urgency of research into Long Covid in children published in The ERJ ⬇️ Huge thanks to @buonsenso.bsky.social and @laelyonker.bsky.social for leading on this. #longcovidkids @longcovidkids.bsky.social publications.ersnet.org/content/erj/...

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Binita Kane @binitakane.bsky.social · 14/05/2025

I talked about the history of ME, how and why we have got here, I mentioned @rageshriwrites book ‘Unheard’ and how patients with ME have been dismissed for decades.

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Binita Kane @binitakane.bsky.social · 14/05/2025

A massive thank you to ActionForME and @longcovidsupport.bsky.social for inviting me to speak at today’s joint #LongCOVID and #ME All Party Parliament Group meeting, alongside Profs @daltmann.bsky.social @cgatist.bsky.social and David Strain.

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Binita Kane @binitakane.bsky.social · 30/03/2025

The NIHR has published an evidence map for MECFS research. Summary: generally low quality observational studies, outdated definitions, mostly from high income countries, very few focussed on treatments.

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Binita Kane @binitakane.bsky.social · 22/03/2025

I’ll be joining Asthma&Lung UK alongside @sheencr.bsky.social today to talk about how we can clean up Greater Manchester’s air. Event is open to the public, come down if you can! Manchester Art Gallery 12-2pm ⬇️

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Binita Kane @binitakane.bsky.social · 15/02/2025

From the US consensus guidelines - link to full document here; www.mayoclinicproceedings.org/article/S002...

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Binita Kane @binitakane.bsky.social · 29/01/2025

Brilliant work from the Australian group ‘Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with postural orthostatic tachycardia syndrome and cognitive dysfunction’. H/T @davidjoffe64.bky.social www.nature.com/articles/s41...

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Binita Kane @binitakane.bsky.social · 27/01/2025

Paid opportunity for people of South Asian backgrounds to take part in research around eating disorders ⬇️

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Binita Kane @binitakane.bsky.social · 24/01/2025

‘Pediatric Long COVID has a distinct blood protein signature marked by increased ongoing general and endothelial inflammation, similar to that seen in adults’. More brilliant work from @buonsenso.bsky.social and team 🇮🇹 www.nature.com/articles/s41...

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Binita Kane @binitakane.bsky.social · 21/01/2025

This is what happens when public health policy fails; Flu and COVID: ⬆️ NHS staff sickness, ⬇️ staff vaccination uptake and of course little or no airborne protection for staff in hospitals. Data for week to 15th Dec showed 54,165 NHS staff off sick. Who suffer the most? Patients.

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Binita Kane @binitakane.bsky.social · 15/12/2024

Please share in any NHS nursing networks. Thank you 🙏🏽

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Binita Kane @binitakane.bsky.social · 09/12/2024

Constructive vs destructive criticism. Constructive = helpful, a moment for self-reflection and growth Destructive = unhelpful, critic usually holding up a mirror to their own issues. (Ignore and move on). So much more green than yellow here c/w the other place 🙂🙏🏽

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Binita Kane @binitakane.bsky.social · 28/11/2024

In the most incredible company tonight at The Inclusive Awards. Rather shocked but proud to be named in the UK Diversity Power List 24/25 😱

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Binita Kane @binitakane.bsky.social · 27/11/2024

Read @drrageshri.bsky.social book ‘Unheard’. It explains the history and origins of medical gaslighting and why conditions like ME continue to be psychologised and under researched.

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Binita Kane @binitakane.bsky.social · 23/11/2024

Agreed more research is needed. Here are a few more papers. I now have >400 patients under my care with Long Covid and ME (mostly moderate to severe end) and recognise this syndrome clinically in very many patients. They do improve with plasma expansion.

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Binita Kane @binitakane.bsky.social · 23/11/2024

It’s an understudied area, but Hypovolaemia is well-described in POTS - dysfunction of the RAAS system plays an important role in maintaining (or not correcting) low blood volume. Here’s an excerpt from Prof Lobo’s book.

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Binita Kane @binitakane.bsky.social · 17/11/2024

Hi Penelope - the photo on the left is taken outdoors. The one on the right was during a meal (we had to eat!) This is us during the conference itself. Sending you lots of love. I look after lots of patients with severe ME and know how tough it is x

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Binita Kane @binitakane.bsky.social · 17/11/2024

I was privileged enough to meet Prof Peter Rowe from John Hopkins on the trip to Rome. This man has been the leading light in paediatric #ME in the US for decades. Planning on a trip next year to spend some time in his clinic - we have so much we can learn from these giants in the field.

Picture of Dr Rowe’s biography from John Hopkins university outlining his many accomplishments in paediatric ME

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Binita Kane @binitakane.bsky.social · 16/11/2024

Working in the Long Covid/ME space in the UK is a lonely place. As I reflect in taxi home on the last 48 hrs, I don’t regret a single moment. I genuinely believe that the group of people I was with yesterday can change the world for kids with these illnesses. There’s power in global collaboration.

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Binita Kane @binitakane.bsky.social · 15/11/2024

Brilliant from @laelyonker.bsky.social Lessons from MIS-C translating into therapeutic targets for Long Covid in kids. Such brilliant work coming out of the States 🇺🇸 👏🏽👏🏽👏🏽

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Binita Kane @binitakane.bsky.social · 15/11/2024

Brilliant, high quality research from @buonsenso.bsky.social and colleagues on #longcovidkids - Children are affected - Immunopathology / physiology similar to adults - Hope for biomarkers and diagnostics He’s just been called a machine by our next speaker. I agree 💪🏽

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Binita Kane @binitakane.bsky.social · 15/11/2024

The EM images of microclots from @resiapretorius.bsky.social group are something else.

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Binita Kane @binitakane.bsky.social · 15/11/2024

It’s possible to get ventilation and room occupancy right at a conference. Great work @buonsenso.bsky.social 👏🏽

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Binita Kane @binitakane.bsky.social · 15/11/2024

Front row seats with @resiapretorius.bsky.social @laelyonker.bsky.social Mark Faghy (needs to sign up) and David Putrino (needs to be searchable!) #longcovidkids #conferencing

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Binita Kane @binitakane.bsky.social · 14/11/2024

Rome-ward bound! 🇮🇹 Looking forward to seeing the international rockstars of #Longcovidkids and getting to finally meet Danilo in-person!. Amazing leadership and so grateful to him for bringing us all together. Never tire of this view.

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Binita Kane @binitakane.bsky.social · 09/10/2024

Really sorry about this. We’ll be back with a new date.

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Binita Kane @binitakane.bsky.social · 08/10/2024

No one should starve to death in the UK. This is what happened to Maeve Boothby O’Neil due to the lack of awareness, expertise & services for people with severe #ME.She was disbelieved until she died. Coroner has issued a prevention of future deaths notice to NHSE & other bodies. #There4ME

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Binita Kane @binitakane.bsky.social · 30/09/2024

From Prof Lobo and Dr Gall’s pre-pandemic book about PoTS. A nice explanation of how in cardiovascular dysautonomia, suppression of the RAS system leads to low circulation blood volume. See this phenomenon clinically in severe #longcovid and #ME, contributes to tissue hypoxia.

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Binita Kane @binitakane.bsky.social · 29/09/2024

For anyone interested in the pathophysiology of MECFS there’s a nice infographic here from this article; www.jci.org/articles/vie... LOTS more research needs to be done of course. In clinical practice the vascular dysregulation is something I very much recognise 🧵

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Binita Kane @binitakane.bsky.social · 17/09/2024

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. Covered in the Times (link here) archive.is/2024.09.16-2...

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