@binitakane
Long COVID/ME interested lung doctor | Campaigner | Independent SAGE | Co-Founder South Asian Heritage Month | Diversity Power List 24/25 Website: https://thelongcovidclinic.co.uk Linktree: https://linktr.ee/binitakane
There are clear NICE guidelines but you need to find a healthcare professional who is aware of them and confident to diagnose - which is difficult if you have never been trained. So it’s a complete lottery. We need more education. Hope you are doing ok.
Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.
Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness.
The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.
Thank you Dan - hope you are doing ok x
I appreciate your words. What’s encouraging is that things are slowly changing. Sending you all the best.
Dr Jaegar’s clinic - now in Bavaria
Thank you Ian 🙏🏽
Dr Benita Kane’s video series ‘Long Covid,What you can do’ on YouTube is fantastic for #MECFS too.
Great combination of interviews with top international scientists with ideas, tips, support for patients.
#longcovid
youtube.com/@lccwycd?si=...
Click on the ‘live’ header for the full video series:
Amazing work 👏🏽👏🏽👏🏽
Until then - alongside incredible advocates like @thereforme.bsky.social @longcovidsupport.bsky.social @longcovidkids.bsky.social and many MANY others, we’ll keep pushing for change. Thank you to everyone who supports us and to anyone to takes the time to listen 🙏🏽
My goal is to one day be obsolete. To be able to close down this clinic because there are excellent NHS services - like we have for any other severe chronic illness.
The patients and carers suffer enormously, deserve better and should not have to pay for care.
In the podcast, 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.
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).
The service emulates a tertiary level specialist interdisciplinary service - with one important difference - my patients are all over the country and so are my team.
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.
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 (especially @tessamunt.bsky.social @joplatt.bsky.social) are working hard to change this.
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 #LongCOVID and Myalgic Encephalomyelitis (#ME). 🧵
youtu.be/pk00btt7CVs?...
Thank you Tom! That’s very kind of you.
Can you spare one minute to support children with Long Covid today?
Use our template to write to your MP.
longcovidkids.eaction.org.uk/awarenessday
#LongCovidAwareness #ChildrensRights
@lcawarenessint.bsky.social @longcovidsupport.bsky.social @longcovidphysio.bsky.social @longcovidsos.bsky.social
Really well. Unfortunately they cannot mandate training for physicians (this should never have been stated in the plan). We have discussed a multi pronged approach to increase education and awareness. Watch this space!
Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.
The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
We desperately need good data to make the case for ME to government. The Big Survey - designed with #pwME for #pwME will be a great help. If you've got ME or ME-like symptoms as part of long Covid, do consider taking part. But, remember that the Big Survey closes tomorrow, Tuesday. 👍🏾
Reminder!
Happening today at 8pm GMT.
It will be recorded if you cannot join the live session.
@binitakane.bsky.social
This from @nickbenton.bsky.social brings back memories of reading books in 10 min daily chunks when my ME symptoms were worse.
It’s brilliant seeing Nick starting his own blog after writing a guest piece for @thereforme.bsky.social last year. A recommended read!
open.substack.com/pub/theperso...
It was not a super flu year and why I think government and NHS messaging was wrong and counterproductive - my latest post
christinapagel.substack.com/p/it-was-not...
Today James turns 39 🎈
It’s a hard day for us both, but also a time to think about how, despite the challenges, I’m so lucky to have had this wonderful man in my life for the past 12 years.
In lieu of gifts we’ve been raising money for Edinburgh University’s ME research 👨🔬
Hi! I've started a free Substack - The Personal ME - about myalgic encephalomyelitis (ME).
My first post is about my cognitive dysfunction - what it feels like and why explaining it can be maddening:
thepersonalme.substack.com/p/the-day-my...
If you enjoy it, please subscribe!
FLU is in the AIR
🇬🇧 schools
" We haven't done anything different. ...wash hands" 🤔
What lessons need learning from the pandemic?
Give every child
Every teacher
Family
Healthcare Workers
#CleanAirIndoors
#Ventilation
#AirFiltration
Wear a respirator
youtu.be/WxEssOeEsVk?...
BREAKING - @meassociation.org.uk awards £1.1million - its largest-ever research grant - to Prof @daltmann.bsky.social, Imperial College London, for landmark 3-year study to find shared pathways between #me/cfs and #LongCovid | 10 December 2025:
www.imperial.ac.uk/news/article...
Brilliant article by Rebecca Thomas (the Independent): tinyurl.com/yksjxj5b
and Victoria Macdonald (Channel 4 News): tinyurl.com/3dn8mwx5
They've covered the 'formalin scandal' brilliantly.
#1/21
@channel4news.bsky.social
@the-independent.com
@vsmacdonald.bsky.social
@rebeccasmt.bsky.social
