Long Covid Support

The next Fireside chat with Dr. Binita Kane and Helen Oakleigh is on Wednesday 23 October at 6pm BST! Lessons from the US: Treating ME and Long COVID with Dr. Jennifer Curtin, Chief Medical Officer and Co-founder of RTHM in San Francisco. Link to YouTube is here: https://lnkd.in/eUe7YXpD Dr. Curtin is an infection-associated illness expert, specialising in ME & its comorbidities. She brings a unique perspective as both a clinician & a mostly recovered ME/CFS patient, with a deep understanding of the challenges faced by people w/Long Covid & ME. Dr Kane and Dr Kurtin will discuss treatment approaches for ME/CFS and Long COVID, addressing both medical and non-medical interventions. Sharing insights into chronic co-infections, her approach to treating Long COVID, and the development of an acute COVID recovery kit. Please subscribe to the YouTube channel to watch existing and future content. It will be recorded for those that can't make it live. #longcovid #mecfs #chronicfatigue #postviralsyndrome #pacing #pacingnotpushing #patientempowerment #healthadvocacy #pem #postexertionalmalaise #chronicillness #stoprestpace #firesidechat #longcovidcommunity #longcovidclinic #longcovidsupport

A very special Long Covid Awareness message from Long Covid Support. A light went out on Wednesday 18th September. #longcovidawareness #longcovid #longcovidcommunity #longcovidsupport #advocacy #covidisnotover Alt Text: Background image of a microphone with no one there speaking in front of rows of seats. Text reads A light went out on Wednesday 18 September. For those that had the privilege of knowing her, Jos Bell was a very special lady. Her dedication, determination and spirit reached far and wide including within the Long Covid community, and especially within our charity where she volunteered as an advocacy consultant. Jos had an immensely engaging personality and her breadth of knowledge was unequivocal. Even while dealing with debilitating conditions herself, her energy, insights, enthusiasm and can-do attitude impacted all who had the privilege of knowing her. We were in awe of Jos. Not having her around is still very difficult to come to terms with. We are incredibly sad here at Long Covid Support. We will continue our work advocating for appropriate Long Covid care, research and support, using all the knowledge and strength that Jos so selflessly gifted us. Long Covid Support www.longcovid.org Long Covid Support is a registered charity in England and Wales (1198938)

Wednesday 9 October at 6pm BST The Long COVID Clinic - What You CAN Do! Fireside Chats with Dr. Binita Kane and Helen Oakleigh. Fireside chat series: Non-Restorative sleep and Autonomic Rehab. Link here to join the conversation: https://lnkd.in/epgeX-by This episode is a dive deep into the importance of sleep restoration and autonomic rehabilitation for Long COVID recovery. Dr. Binita Kane speaks with renowned expert Dr. Raouf (Ron) Gharbo, Director of Autonomic Rehabilitation at Virginia Commonwealth University, about his groundbreaking work using heart rate variability (HRV) to restore autonomic balance and improve sleep quality for Long COVID patients. With over 30 years of medical experience, Dr. Gharbo has developed innovative techniques that are gaining national attention, helping patients manage chronic fatigue, autonomic dysfunction, and other post-viral symptoms. For anyone looking to better understand the critical role of sleep and autonomic balance in chronic illness recovery this episode is a must watch. This will be recorded so please subscribe to the YouTube channel and get a notification of this episode. Lots of other content available on the channel too - https://lnkd.in/ezisR_3K #longcovid #sleeprestoration #sleep #autonomicrehab #rehabilitation #heartratevariability #hrv #heartrate #chronicillness #postviralsyndrome #patientempowerment #healthcareadvocacy #chronicfatigue #autonomicdysfunction #longcovidrecovery #longcovid #sleep #mecfs #longcovidsupport #firesidechat #thelongcovidclinic 

Our Long Covid Choir meets every Wednesday at 7pm BST. Please join us if you can. Registration can be found here: https://lnkd.in/evu2Snz5 #longcovid #choir #longcovidchoir

Thank you Oonagh Cousins for your incredible advocacy in this informative and in-depth interview on Sky News yesterday.

Dr Binita Kane & Helen Oakleigh present "The Long Covid Clinic- What You CAN Do". In partnership with Long Covid Support. Wednesday 25 September 2024 at 6pm BST Medical Gaslighting: What is it? and how to handle it. Link here: https://lnkd.in/e_PPidpM Welcome to The Long COVID Clinic’s Fireside Chats with Dr. Binita Kane and Helen Oakleigh! In this episode, Dr. Binita Kane speaks with Dr. Rageshri Dhairyawan about the complex and often overlooked issue of medical gaslighting. They will explore how some patients, particularly those of niche segments, are dismissed or invalidated in medical settings and how this perpetuates health inequities. Dr. Binita Kane is a consultant respiratory physician with a special interest in post-viral syndromes, including Long COVID. She is deeply involved in public health advocacy, particularly focused on healthcare access and support for chronic illness patients. Dr. Kane has been a powerful voice in the media, bringing attention to the challenges faced by those suffering from Long COVID and other chronic conditions. Through her work, her clinic and the Fireside Chat series, she continues to educate the public and empower patients with practical strategies to navigate the difficulties in the healthcare system. Helen Oakleigh, co-host of the series, is a passionate advocate for health and wellbeing, bringing her own long covid life experiences to the conversation. Helen is a founding member of our charity Long Covid Support. As a presenter, Helen helps bridge the gap between clinical expertise and the patient experience, creating a space where complex medical topics are made accessible to a wider audience. Her background as an actor and director also adds a unique perspective to these discussions, ensuring they remain engaging and informative. Dr. Rageshri Dhairyawan is an NHS Consultant in Sexual Health and HIV Medicine, based in London. She is a strong advocate for health equity and is known for her work addressing the silencing of marginalised voices in healthcare. Her new book, "Unheard: The Medical Practice of Silencing", explores how systemic bias in medicine can lead to poor health outcomes for those who feel unheard and argues for better listening at all levels. Dr. Dhairyawan's insights as both a doctor and patient will empower listeners with strategies to advocate for their health effectively, avoid misdiagnosis, and recognise signs of medical gaslighting. Subscribe now, set a reminder for the live Questions and Answers session, and join us for an essential discussion on how to confront and handle medical gaslighting. Don't miss this chance to ask your questions and learn how to navigate these challenging healthcare experiences. It will be recorded for those that can't make it live. #MedicalGaslighting #HealthEquity #PatientAdvocacy #RageshriDhairyawan #BinitaKane #InvisibleIllness #PostViralSyndrome #LongCOVID #HealthSystemBias #Empowerment #HealthEducation #helenoakleigh

The Long Covid Groups (comprising Long Covid Support, Long Covid SOS, Long Covid Physio and Long Covid Kids) say patients are being abandoned as dedicated clinics close despite a rise in UK cases. Charities and many medical experts have long maintained we are in the midst of a global health crisis. Without a concerted effort to address this issue, the closures will only add to the significant burdens already being faced by healthcare systems and economies. Amitava Banerjee, Professor of Clinical Data Science and Honorary Consultant Cardiologist & Long Covid SOS Trustee “The evidence for the health, healthcare and economic effects of Long Covid, whether on individuals or societies, is unequivocal. Therefore, we must ensure that coordinated research and care are prioritised for Long Covid." Sammie McFarland, CEO & Founder, Long Covid Kids "Appropriate funding and resources would provide clinicians with the best possible opportunity to improve patients' lives, but this hasn't been forthcoming. Rising school absenteeism and Long Covid in children are red flags demanding immediate action. Closing specialised clinics risks creating a healthcare vacuum with far-reaching consequences for healthcare, education, families, and the future workforce." Professor Mark Faghy, Vice-Chair of Long Covid Physio “The scaling back and closure of services around the UK at a time when the prevalence of Long Covid is rising seems counterintuitive. Before these decisions were made, there were calls from patients and healthcare workers to grow services and ensure consistency across the UK but it seems to be going the other way.” Nikki Smith, Founding Member, Long Covid Support “With many people now getting Covid-19 multiple times, the risk of having on-going symptoms of Long Covid is increasing, which will result in more pressure on the NHS, fewer people able to work and an even bigger hit on the economy. It must be a priority of our new public service Government to ensure effective Long Covid clinics that are up to date with the latest research, are accessible by all.” 🔗 link to full statement: https://lnkd.in/ex3swXtN Long Covid Kids Long Covid SOS Long COVID Physio #longcovid #longcovidclinics #treatlongcovid #longcovidruinslives

We are incredibly pleased and grateful that Laura Evans has joined our Advisory Board. Laura's knowledge and advice will be of great benefit to our charity. #longcovid #employment #advisor

Oonagh Cousins (Natural Sciences (Biological) 2014)) is supporting the #ThereforME campaign, calling for a transformation in care for those with Long Covid and ME, and biomedical research funding Oonagh retired from rowing in April 2023 after struggling with Long Covid. She has subsequently raised awareness of Long Covid and similar conditions.

Following the publication of the report on Long Covid prevalence in England late last week, there's been lots of coverage. Thank you to Andrew Haley and Long Covid Support Founding Member Claire Hastie for using your precious energy for these interviews. We hope that the Government will take note and take action! Watch the full BBC Look North coverage here: https://lnkd.in/e3f2hSGs If you, or anyone you know, need support and more information about our charity please take a look at our website: www.longcovid.org