Dr. Binita Kane - United Kingdom

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Video on Youtube
(Live in 2 days, Scheduled for 23 Oct 2024)
Treating ME and Long COVID with Dr. Jennifer Curtin
TWENTYONE: Welcome to Episode 15 of The Long COVID Clinic's Fireside Chats with Dr. Binita Kane and Helen Oakleigh! In this episode, we are joined by Dr. Jennifer Curtin, Chief Medical Officer and Co-founder of RTHM in San Francisco, California. Dr. Curtin is an infection-associated illness expert, specialising in Myalgic Encephalomyelitis (ME) and its comorbidities. She brings a unique perspective as both a clinician and a mostly recovered ME/CFS patient, with a deep understanding of the challenges faced by Long COVID and ME/CFS patients. Dr. Curtin co-authored the official clinical guidance for ME/CFS in the United States and is a member of the ME/CFS Clinician Coalition. Her work is dedicated to advancing the understanding of these complex post-viral conditions and delivering innovative treatment solutions to the millions of patients affected worldwide.

Dr. Binita Kane, a consultant respiratory physician with a special interest in post-viral syndromes, continues to lead this informative series, advocating for better healthcare access and support for chronic illness patients.

Alongside co-host Helen Oakleigh, they make complex medical topics accessible, helping patients and caregivers navigate the often-challenging healthcare landscape.

In this episode, Dr. Binita Kane aims to explore Dr. Curtin’s personal journey, from her recovery from ME/CFS to co-founding RTHM. They will look to discuss treatment approaches for ME/CFS and Long COVID, addressing both medical and non-medical interventions. Dr. Curtin will aim to share insights into chronic co-infections, her approach to treating Long COVID, and the development of an acute COVID recovery kit.
Click to expand...

Treating ME and Long COVID with Dr. Jennifer Curtin
 
Posts moved from Be Nourished - Rachel Jessey


The last video was with Nadine McKie.

https://www.youtube.com/live/JzQPA1QXDGw?si=RDaXJUdUyJ63Kji0

I'm not sure if anyone else saw it, but would say don't if you don't wish to traumatised yourself.

It was basically psychosomatic babble about the body not feeling safe, how through imprints into our nervous system from early life trauma we get stuck in fight and flight and then need to feel safe to heal.

It seems like she had/ has long covid, as does her son and is now trying to teach others dodgy theory.

Really quite concerning to see this being shown.
 
Last edited by a moderator:
Binita Kane seems to sign up to an awful lot of unsubstantiated ideas, which is a problem since she's also a go-to quote source for various journalists. Contributes to the impression in some quarters that Long Covid is basically imaginary.
 
Eleanor said:
Binita Kane seems to sign up to an awful lot of unsubstantiated ideas, which is a problem since she's also a go-to quote source for various journalists. Contributes to the impression in some quarters that Long Covid is basically imaginary.
Click to expand...

I got really concerned when she had a series of Rehab people on to talk about how great exercise was for curing Long Covid.
 
It is worth saying that there are lots of decent videos in the YouTube series. And alot of work must go into them. There's one with David Putrino, Amy Proal and Todd Davenport.

Maybe though with a monthly series you run out pretty quickly of reliable experts. And the temptation is to then bring in more fringe 'medicine'?
 
Sparkly Unicorn said:
Maybe though with a monthly series you run out pretty quickly of reliable experts.
Click to expand...

I am not sure that there are any reliable experts. We have had some pretty unhelpful material from some of the people you mention there. Nobody knows anything much about Long Covid so I am sceptical about the value of doing this at all. Most Long Covid is not ME/CFS. It gets better like most post-viral fatigue. If Paul Garner had not been told his Long Covid was ME/CFS we might have been saved a lot of bother.
 
There's a new website up for the Long Covid Clinic

thelongcovidclinic.co.uk

TLCC - The Long Covid Clinic

The first consultant-led Long COVID clinic dedicated to treating children and adults with Long COVID.
thelongcovidclinic.co.uk thelongcovidclinic.co.uk

Had a look on Instagram for the Be Nourished outfit by Rachel Jessey and there's a video of her blending room temperature water to make 'structured water' It might be one of maddest things I've seen. But good on her finding the fourth statement of matter to help us all!

 
Binita Kane on LinkedIn:

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe Long COVID and Myalgic Encephalomyelitis (ME). Despite hundreds of thousands affected, to this day, there are no commissioned NHS services for those at the severe end of the spectrum - though patient advocates, charities and some MPs are working hard to change this.
The transition to the independent sector was never in my life plan - it happened organically. I am very grateful to HLTH Compliance for inviting me onto their podcast to share my journey and experiences of setting up the clinic, which emulates a tertiary level specialist interdisciplinary service - with one important difference - my patients are all over the country and so are my team. My most severe patients are bedbound, tube-fed, have 24/7 full-time care and no regular NHS support outside of their GP (+ possibly a dietician).
Here I talk about how it happened, my road to getting independent CQC registration, as well as the broader challenges of treating Long COVID and ME.

Long Covid Kids Long Covid Support Karen Hargrave Action for ME Solve ME/CFS Initiative ME Association ME Research UK

lnkd.in

LinkedIn

This link will take you to a page that’s not on LinkedIn
lnkd.in lnkd.in

I haven’t watched this myself so far.
 
It is worth watching if you have 52 minutes available.
Binita Kane is running a physician led service much as is being suggested on our recent thread, but in the private sector and with the difference that she recommends off label prescribing and makes use of concepts about disease mechanisms not many of us would follow.

She mentions the impasse with the consultation on the DHSC plan.
 
Dolphin said:
Binita Kane on LinkedIn:

Just over a year ago, I left my 25 year NHS career to dedicate my life to a group of patients who remain largely unseen and unheard by the NHS - people with severe Long COVID and Myalgic Encephalomyelitis (ME). Despite hundreds of thousands affected, to this day, there are no commissioned NHS services for those at the severe end of the spectrum - though patient advocates, charities and some MPs are working hard to change this.
The transition to the independent sector was never in my life plan - it happened organically. I am very grateful to HLTH Compliance for inviting me onto their podcast to share my journey and experiences of setting up the clinic, which emulates a tertiary level specialist interdisciplinary service - with one important difference - my patients are all over the country and so are my team. My most severe patients are bedbound, tube-fed, have 24/7 full-time care and no regular NHS support outside of their GP (+ possibly a dietician).
Here I talk about how it happened, my road to getting independent CQC registration, as well as the broader challenges of treating Long COVID and ME.

Long Covid Kids Long Covid Support Karen Hargrave Action for ME Solve ME/CFS Initiative ME Association ME Research UK

lnkd.in

LinkedIn

This link will take you to a page that’s not on LinkedIn
lnkd.in lnkd.in

I haven’t watched this myself so far.
Click to expand...

Comment underneath
Well done Binita. Your patients so lucky to have you. I may steer a family member in your direction.


View Binita Kane’s graphic link

​


Thanks for your unwavering support X. Just a warning that the waiting time is long (up to 10 months if waiting for me), but I have 2 fab GP colleagues who would be able to see them sooner if needed.
 
Nightsong said:
Kane's "Long COVID clinic" website (link)
Click to expand...

At 14:17 in her interview video, Dr Kane defines how she remotely helps around 11 tube-fed and peg-fed people who cannot advocate for themselves, who have full-time family care, a GP, very little help from the system, some have dietitians, and none have input from NHS or ME/CFS specialist services.

She might medicate some of the symptoms, based on home-testing / studies etc. Commercially its not impossible.

Do those people trying to solve the current hospital cases know this??

Patients are supposed to have the choice through NHS out-sourced contracts. But that needs structuring with the NHS commissioners methodically approached by that charitable consortium - which apparently forgot to mention it - at least until ready to tender for it themelves. In this intensely competitive market.

These consorts seem to represent The Tyson Rehab Academy, the 25% ME Group, BACME, ELAROS, MEA and ME/CFS specialist clinics due to renew NHS-subsidised contracts, as - Professor Tyson allows - inconsistently concerned in malnutrition.

Robert 1973 said:
Thread on what people with ME/CFS need in the way of service:
https://www.s4me.info/threads/a-thread-on-what-people-with-me-cfs-need-in-the-way-of-service.49007/
Click to expand...
 
Last edited:
Meanwhile, back at the ranch, the specialist GPs assisting Dr Kane with holistic interests and considerable knowledge, did on the whole recover themselves from Long Covid and now focus on methods seeming to recover LC patients.

Another highlight is how this clinic unusually pioneered a clinical research structure, so that we might find out if various methods are testable and reproducible, or not - there is commitment to publish whatever the result.

"With my colleague Professor Mark Faghy at the University of Derby, we’re embedding real-world research into everything we do.

"Research and Advocacy

"Dr Kane is actively involved in collaborative research with Professor Mark Faghy (University of Derby), leading a clinic-based research programme with approved ethics for publication of real-word data.

"She has worked alongside clinicians and researchers internationally, and is a member of the World Health Network Long COVID Expert Advisory Group."
 
And her innovative LC Clinic co-founder, the paediatric cardiologist Dr. Kushnood:

He was unusually drawn in by his research interest. Now he is keen to consult on the cardiac treatment and management to alleviate and mitigate some long-term complications crippling children.

He says that the life-changing results speak for themselves. He will publish. He says:

"I would love to contribute even more by increasing the awareness of this condition and more importantly contribute to scientific research and evidence-based medicine, in improve understanding of Long COVID in the wider population and healthcare community.

"Whether I’m reviewing scans, supporting a child through heart failure, or working with national networks to improve outcomes, my goal remains the same:

- to provide clear answers, tailored care, and real hope to children and families facing the toughest of diagnoses.

"As a principal investigator. I am in the process of setting up ethically approved clinical study with support of Newcastle Hospitals Clinical Research team, to look at impact of COVID infection on children through diagnostic blood markers and imaging.

"Sharing knowledge and building future expertise is an essential part of my role. Keen researcher, I am chief investigator and principal investigator for a number of national and international clinical trials in children with cardiac conditions."
 
Hmmm of issues in the treatment section. Emotional regulation, eating healthy, pacing as a recovery tool. Pandemic talked about as history.

But real positives on issues with policy and how its lacking now and making no progress and lack of specialists.
 
You must log in or register to reply here.
Back
Top Bottom