Campaign Update #8: The media is asking the right questions
Appreciation, consternation and edification
We’ve been reflecting on a busy bout of media on ME and Long Covid over the past few weeks. In general, since we launched #ThereForME we’ve been taken aback by the level of media interest. We’ve had a huge (often overwhelming) volume of requests for interviews across different types of media.
What we think has been most noticeable is not just the volume of coverage but the quality of it. To put it simply, journalists are (finally) asking the right questions. We’ve noticed a remarkable openness towards learning about ME: what the disease is, how it affects people, its complex history and the inadequacies in current care provision. Media outlets in the UK today are under-resourced and this is a complex story. But we hope that this could be the beginning of a more empathetic, informed public debate about ME, its links to Long Covid, the need to accelerate and transform care.
Here’s some of our highlights from the past couple of weeks.
Sky News - Monday 23 September
A couple weeks ago Sky’s Sarah-Jane Mee interviewed Oonagh about calls for more support for those with Long Covid, and asked about the frustration surrounding the lack of research and funding. As Oonagh explained the history, Sarah-Jane commented, “It’s startling how little research and funding there is.”
Sarah-Jane recognised that ME has been stigmatised and asked if this attitude affects treatment for those with Long Covid. She commented: “For so long the attitude towards ME hasn’t been good…and medical professionals don’t quite know what to do about it because of the lack of research into it and the lack of treatment.” It was an extraordinary interview (not just from Oonagh!), with a well-briefed journalist asking probing questions.
BBC Breakfast - Saturday 28 September
Just over a week ago we saw the final day of the inquest into the death from ME of Maeve Boothby O’Neill, where assistant coroner Deborah Archer said she would issue a Prevention of Future Deaths report. BBC Breakfast interviewed Maeve’s mum, Sarah Boothby, and Dr Binita Kane, ambassador for #ThereForME.
Listening to Sarah talk about her experiences, Nina Warhurst commented, “It’s a big fallout from Long Covid, isn’t it, ME, and more cases of it,” and asked whether there had been any progress in medical understanding.
Her co-presenter, Charlie Stayt, acknowledged that “A lot of people, me included, are on a big learning curve with ME”. He expressed a view of the situation that is so familiar to so many of us:
“We have an extraordinary situation, where it feels like the scale of the problems caused by ME are so great that the NHS and health services struggle to cope. You know, you’d think it should be the other way around: because they are so devastating, you’d think it would get more attention.”
Natasha Devon on LBC - Saturday 28 September
Also following the final day of Maeve’s inquest, Natasha Devon interviewed Karen on her LBC show. After an extremely popular segment on ME last month, Natasha recognised the need to be talking and learning about ME and promised to focus on it again. She wanted to know why the inquest into Maeve Boothby O’Neill’s death is considered such a significant moment. She was also keen to understand the gaps in medical professionals’ understanding of ME, and asked if there were still some who believed ME was psychosomatic.
She ended by saying she hoped the coroner’s decision might cause NHS bosses to rethink rejecting calls for specialist care for people with Severe ME. (This had been covered in The Times, with comments from Karen about how both patients and healthcare workers have been failed).
Natasha Devon received a text later in the show asking why she spoke about ME and Long Covid but not Chronic Fatigue Syndrome. Natasha explained that after the hour she did on ME in August she had the biggest response she’d ever had:
“Some of the emails that I’ve got said you should never use the term chronic fatigue syndrome, and so I stopped using it based on that piece of advice and in my head - and I could be completely wrong - chronic fatigue syndrome was a misnomer for ME. Now, I could be completely wrong about that and they could be two completely separate conditions. I’m on a kind of learning journey with all of this because I understand that there’s a big story here and that there’s an investigation that needs to happen and I’m trying to advocate as best I can, and platform as best I can, but I’m not getting everything right…I do want to get it right but I’m coming from a place of relative ignorance in terms of trying to discuss the issue.”
Matthew Wright on LBC - Sunday 29 September
LBC wasn’t done with their inquest coverage after Natasha’s segment. Matthew Wright has been interested in ME for some time and in an interview with Dr Charles Shepherd of the ME Association, he said “It bothers me that we seem to be going around in circles.” He wanted to know why there was no specialist referral services or expertise available for people with Very Severe ME: “I can’t believe we’re still talking about it…30-40 years down the line”. His statement matches our own incredulity.
The Rest is Politics - Wednesday 25 September
A couple weeks ago Alastair Campbell and Rory Stewart talked about ME and LC on their podcast The Rest is Politics (with an honourable mention of the BBC’s coverage of friend of #ThereForME Dr Becky Williams). Philosopher Vlad Vexler, who has ME and recently contracted Covid for the first time, responded via video. Vlad spoke about what he felt they got right, but also about what they didn’t get quite so right (e.g. ME is *not* a mental illness, there *are* biomarkers for ME) and what else they could do, given their platform.
Their response last week was gracious and showed they were open to learning more. Rory and Alastair have an important platform, and inquisitive minds, so we very much hope this is the beginning of more coverage from The Rest is Politics.
If the interests and concern of the mainstream media reflect the interests and concern of the general public, then this shift towards an attitude open to understanding ME is very much welcome.
Thank you, as ever, to Adam, aka @BrokenBattery, for the recordings. You can find his YouTube channel here. Adam has been doing the community - and our campaign - a real public service.
We’ll see you next week.
This is a welcome development considering how for a long time the media stigmatises pwME.
In my region we are facing alot of resistance from health professionals to being educated about ME.
Local GPs refuse to let my support group address one of their CPD meetings, while the health academy at Huddersfield University point blank ignores my messages requesting a meeting to discuss how my support group could help educate medical students about our lived experience.
Same problem with clinical directors in some of the local ICBs.
As for research this country is light years behind the research going on in America, Germany and Australia.
This is due as Dr William Weir told me in an interview due to the dogmatic beliefs of the British medical establishment.
A warmer response from sections of the media is very welcome but we have to recognise there is a mountain to climb in terms of educating the health profession.
Thank you for sharing this excellent roundup of progress made in the media. I was inspired watching Oonagh’s interview - I’m so grateful she’s using her platform to bring awareness to ME/CFS and Long Covid.
I sincerely hope Maeve’s inquest sparks change - so that no other patients are abandoned in the way she (and many others) have been.