Campaign update #5

ME and Long Covid in the media

Between work, caring responsibilities and holidays it’s been a busy time for us in #ThereForME HQ. So this week’s post is a quick recap with some of our media highlights from the past week. It’s fair to say that it’s been a big media week (again) for ME and Long Covid!

We’ll be back in your inbox with a proper post next week. In the meantime, we hope you enjoy the update. As well as #ThereForME in the media, we’re also sharing highlights from some of the many other fantastic advocates who’ve been speaking out in the news over the past week. For anyone with ME or Long Covid, advocacy comes at a cost. So fellow ME and Long Covid advocates, we salute you!

#ThereForME on BBC Breakfast

Hot off the press, this morning Oonagh and I were featured in a segment for BBC Breakfast. We spoke to Sophie Long about our experiences of ME/Long Covid, treatment for infection-associated chronic conditions and challenges with NHS care. Dr William Weir and Dr Binita Kane joined BBC Breakfast live to discuss how decent care has been held back widespread beliefs that ME is psychosomatic. A big thanks to BBC Breakfast for the coverage - we think the case for an NHS that’s #ThereForME is building.

You can watch the full clip here.

Natasha Devon talks ME on LBC

At the weekend mental health campaigner Natasha Devon hosted an LBC call-in on ME. Clearly she was inspired by the response. In an Instagram post afterwards, where she mentioned she’d be coming back to the issue, she wrote:

“There is what appears to be a massive scandal happening in our country right now, which hardly anyone is talking about because its victims are rendered, through their circumstances, largely silent: I’m talking about the fact that many medical professionals STILL believe people living with #ME can ‘think their way out’ of the illness, that it’s psychosomatic, or can be cured with exercise therapy.”

Beginning the show by reading from a recent article by George Monbiot, Natasha didn’t pull any punches taking on the history of ME and patients’ experiences of being gaslit (and worse). All of the callers were fantastic and, if you’re able to, the 45-min show is worth listening to in full (clip here). Some highlights below.

“The biopsychosocial model […] makes ME patients unreliable witnesses to their own bodies. It says in the model that we are catastrophising, that we misunderstand the symptoms of recovery and think that this an ongoing illness, when really it’s just the the normal aches and pains […] It opens the door for just about anybody to say well actually you’re not telling the truth. Or you are telling the truth as you see it but your truth is wrong.” - John, ME since 1986

“Please remember to mention those who are truly invisible and left to rot in bed. My husband is one of them. He cannot call in because he’s unable to communicate, he cannot listen to the show. He has extreme sound sensitivity to the extent that I can’t call in either, I can’t talk in the house. Nor can I leave the house to make that phone call. He’s completely dependent on me for everything and it’s not safe to leave him alone. To say it’s a living death does not do this disease justice. It’s more like a living hell with no end in sight. Twelve years and counting here.” - Carer to a husband with Very Severe ME

Long Covid inequalities on Channel 5 and BBC

The past week also saw coverage of a new report highlighting a stark North/South divide in the prevalence of Long Covid across the UK. Media coverage of the report included detailed segments on BBC Look North and Channel 5 News. The piece on Channel 5 News was covered by Ruth Liprot, who has suffered from Long Covid herself. She started by explaining:

“There’s nothing fair about who gets Long Covid and who doesn’t. But what’s definitely unfair is that it appears you’re more likely to get it if you live in the North of England than you are if you live in the South.”

Also covering the report’s findings, Fran Haddock spoke to BBC Sheffield about her experiences.

What a week! We’re looking forward to much more ME and Long Covid coverage to come. We’ll see you next week.