Campaign Update #3: #ThereForME in the media
It’s been a busy week for #ThereForME, and, like many of you, we’ve been following the inquest of Maeve Boothby O’Neill.
Our next proper post will be in a few days, so, in the meantime, here are some of our recent press mentions. The campaign is taking off!
Channel 4 News, Friday 9th August 2024
The Guardian, Friday 9th August 2024
What is ME and why is the NHS approach to it being criticised?
A campaign called #ThereForME is demanding a “transformation” in NHS care, as well as highlighting the link between ME and long Covid, which share striking similarities in terms of symptoms and being triggered by viral infections.
BBC Radio 4 World At One, Friday 9th August 2024
The Times, Tuesday 6th August, 2024
My husband is bedbound with ME at 37. I grieve for the life we had.
“A new report by #ThereForME highlights how failings in NHS care are the norm. A survey involving 328 patients found that not a single one with very severe ME felt the NHS “had been there for them”. Multiple patients described traumatic experiences in hospital, with some saying they would “rather die at home” than have to seek NHS care again, even if experiencing life-threatening symptoms.
There are no treatments for ME, and no specialist inpatient NHS services. An open letter signed by 2,624 patients and carers, sent this week to Wes Streeting, the health secretary, calls for the government to commit £100 million a year to funding medical research into ME and long Covid. It also calls for the appointment of a minister for long Covid and ME, a new NHS treatment protocol for severely ill patients, and action to improve at-home care.”
Observer Letters, Sunday 4th August 2024
ME: We need more funding and research
Alastair Miller claims there have been “years of well-funded research” into ME (“Maeve Boothby-O’Neill’s harrowing case highlights clashing NHS narratives on ME”). We disagree. UK research funding for myalgic encephalomyelitis has been demonstrably insufficient compared with the high symptom burden and with other diseases. From 2015–2020, just £6m was committed in funding for ME research through the National Institute for Health and Care Research and UK Research and Innovation, compared with £53m for Parkinson’s disease and £22m for multiple sclerosis.
I really welcomed the fact that Channel 4 News gave so much time for this segment, and Karen came over so well. Tremendous and very successful efforts with media coverage, and I love the way the website summarises everything 👍
Thank you so much for campaigning for us all. I’m severe 95% bedbound with my husband caring for me so it’s means an awful lot knowing you’re fighting for us!