Campaign Update #16: Five Years On
The ongoing fight for change
This month marks five years since the official start of the pandemic and the first lockdown. While the world may be trying to move on, we know that Covid-19 continues to devastate lives.
The need for proper recognition, support, and care for Long Covid remains as urgent as ever. Recovery remains out of reach for many, and the NHS is still failing to provide the essential treatments that people desperately need. Half of those with Long Covid go on to develop ME, a condition that has suffered decades of neglect, inadequate care, and minimal research funding.
We were deeply moved by the powerful activism and solidarity shown on Long Covid Awareness Day. Five years on, the community remains relentless in pushing for change. In this blog, we’re sharing key updates from the #ThereForME team and our allies as we continue our fight for progress.
Remembering Ondine Sherwood
We were heartbroken to hear of the loss of Ondine Sherwood, a pivotal force in the Long Covid community. Ondine was instrumental in raising the alarm with policymakers at the start of the pandemic, working tirelessly for the patient-led movement and founding the UK-based charity, Long Covid SOS. Her contributions have left a lasting impact. Our thoughts are with her loved ones and everyone at Long Covid SOS.
#ThereForME in the media
Karen was recently featured in an article in the political magazine The Lead titled "People with ME have been neglected." In the piece, Karen spoke out about the ongoing neglect of those with ME, shedding light on the challenges faced by individuals living with this debilitating condition and explaining our #FundThePlan campaign. You can read the full article here.
Oonagh and Binita have also been busy speaking to the media as part of coverage around the 5-year Covid anniversary. Both appeared together on BBC Radio 5 Live last Wednesday. Later that day, Oonagh also did a round of BBC local radio interviews, sharing her experience with Long Covid and advocating for better recognition and support. Binita also featured on BBC Look North in a powerful segment with Dr. Alexis Gilbert, who developed Long Covid after working on the pandemic’s frontline.
A huge thank you to Adam from @abrokenbattery for capturing these clips and sharing them on social media!
Listen to #ThereForME on podcasts
We’ve also been taking a whirl at podcasting.
Emma appeared on the Guardian podcast Today in Focus this morning, sharing her experience of caring for her partner, James, who has very severe ME. She discussed his diagnosis, the lack of care available through the NHS, and the reality of having to launch a GoFundMe to access essential treatment. She powerfully laid bare the failures in care and the need for change.
Listen here:
We also spoke with Julie Taylor (of Long Covid Nurses & Midwives UK) on her podcast, Living with Long Covid. Emma and Karen discussed how they met and support each other while caring for partners who developed Very Severe ME following Covid infections. We also talked about #FundThePlan, as well as the broader fight for recognition and treatment for ME and Long Covid.
Listen here:
Crunch ME + #ThereForME report
We were excited last week to publish the very first interim version of our UK ecosystem report for ME and Long Covid, created in collaboration with CrunchME. This report maps out key stakeholders and initiatives across the UK, aiming to inform advocacy efforts, policymakers, and potential funders of research and care.
While still a work in progress, we believe it’s at a stage where it can be useful, so we’re sharing it now rather than waiting! We’d love to hear your thoughts - what parts do you find useful, and what would you like to see in future updates of this report?
New report on Long Covid Services
Long Covid Support and Long Covid Kids recently published a report highlighting a growing crisis in Long Covid care. It is deeply concerning to learn of the closure or imminent shutdown of many specialist services. Equally troubling is the ongoing difficulty faced by both adults and children in accessing quality care, particularly physician-led care, despite clear NHS guidelines stating it should be available. You can read the full report here.
Following on from the report, our friends at Long Covid Kids have launched a petition calling on the government to take action. More than 13,000 people have already signed and it’s not too late to add your voice!
#WhereIsIt?
Last week, our friends at Not Recovered launched a new campaign: #WhereIsIt?
The campaign is focused on the 2022 APPG on Coronavirus report with 10 critical recommendations to address the Long Covid crisis. One key recommendation was a commitment of at least £100 million per year for dedicated Long Covid research, which is vital for advancing biomedical studies and developing effective treatments. However, three years later, this funding is yet to materialise, leaving millions without a clear path to treatment or recovery.
We stand with Not Recovered in asking: #WhereIsIt?
As we reflect on these five years, it’s clear that the patient-led movement for Long Covid has been crucial to progress. Governments completely failed to anticipate the impact of Long Covid - despite the long history of infection-associated chronic conditions, including ME - and the tireless efforts of patients have driven much of the recognition and research we have today.
Our goal remains to secure treatments and cures, which can often feel distant and out of reach. However, we should take confidence in the significant strides made by patient-led advocacy in just five years. With continued persistence, we can achieve the improvements that so many urgently need. Here’s to the future and the work still ahead.
Thank you so much for your exceptional advocacy – you bring us all so much hope!
Thank you for continuing to get media coverage and disseminate correct information, there was gap in such proactive public education and advocacy for ME it means so much especially to those too ill to speak up .