Fellow Speakers: Prof Tom Trinick, Dr William Weir and Prof Chris Ponting @cgatist.bsky.social

Real change doesn’t happen without these persistent, informed, and collective patient voices. Grateful to be part of a community that is not only raising awareness, but actively shaping the future 💙

It continues to challenge outdated narratives, amplifying lived experience, and push research and policy in the direction patients have long-needed.

Huge thanks to Hope 4 ME and Fibro Northern Ireland - patient advocacy has been the driving force behind so much of the progress we’ve seen in the last few years.

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

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

I haven’t input I’m afraid. I’ve not looked but heard it’s the same as before but with the pharmacological treatments removed. Just so disheartening if that is the case.

Cardiovascular adjustments to gravitational stress (1991)
ntrs.nasa.gov/api/citation...

Reading this review on spaceflight adaptations and this line has caught me:
"Even vigorous exercise in the supine position fails to prevent orthostatic intolerance after bed rest"

Hydration, Appetite, and Blood Sugar in POTS | #longCOVID YouTube video by The Long Covid Clinic: What You CAN Do

(Talk is here in case you missed it: www.youtube.com/watch?v=Ar0X...)

CATA (Covid Airborne Transmission Alliance) has today issued this press release ahead of next Thursday's publication of the Inquiry's module 3 report:

tinyurl.com/CATA-press-r...

A new aid in the doctor’s office: Introducing the Long COVID Treatment Guide - The Sick Times Too often, people with Long COVID hear that since clinical research is still underway, not much can be done for them at this point. We at the Patient-Led Research Collaborative and RTHM Clinic reject ...

Op-ed out today in @thesicktimes.org from PLRC co-lead @leticiasaurus.bsky.social and @jencurtinmd.bsky.social on the #LongCovid Treatment Guide!

“Too often, people with Long COVID hear… not much can be done for them at this point. We… believe it is a fallacy that hinders access to care”

So excited the #LongCOVID Treatment Guide is live! This has been over a year in the making working with the incredible team at @patientled.bsky.social!

Thanks to everyone who reviewed & gave feedback on the guide! We really hope it helps the #IACC community!

Phenomenon work from Jen Curtin and team 👏🏽👏🏽👏🏽

HLTH Chat Podcast Episode 8: Treating ME and Long Covid with Dr Binita Kane @binitakane.bsky.social

m.youtube.com/watch?v=pk00...

Screenshot from Science for ME weekly update

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

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.

Episode 8: "Treating ME and Long Covid with Dr. Binita Kane" | HLTH Chat Podcast YouTube video by HLTH Compliance

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?...