LBC call in Natasha Devon wrote about Wessely the other day which may have promoted this calling. https://www.lbc.co.uk/opinion/views...-system-is-natasha-devon-on-sir-simon-wesley/ !!#MECFS & #LongCovid Peeps!! I just had an Insta message from Natasha Devon saying she is going to cover ME on her show tonight 8pm @LBC !! She doesn’t use her X account anymore but she is on s PLS RT & TAG EVERYONE #ThereForME https://twitter.com/user/status/1827366037592871373
Would be good to get some people from the forum to discuss the history and bad science. Just did a quick search and these look like the contact details To contact the presenter in the studio, call 0345 60 60 973 text 84850 or WhatsApp 0345 60 60 973 Postal address: 30 Leicester Square, London WC2H 7LA https://www.lbc.co.uk/contact/contact-lbc/
https://twitter.com/user/status/1827387994329710645 Tweet: 'To contact the presenter in the studio, call 0345 60 60 973 text 84850 or WhatsApp 0345 60 60 973' . Edit. I didn't remember the whole twitter thread would show up. .
Me too. I darent as I’d get eaten alive or might say something slightly wrong due to nature of talking when exhausted huge admiration to those who are both up to speed enough and able to be on their toes in a conversation- it’s so frustrating how we are so far it would even be lots of work to convey the extent of adjustments that would be needed for most of us
Much too short notice for PWME to be able to prepare what points to make and fit it in around other activity. that type of thing would take a lot of concentration & energy
John from Swansea ( John the Jack? ) has explained his illness eloquently bringing in Wessely's name. He described not being seen as a reliable witness to his own experience which has been repeated by the presenter.
8.32 presenter says that most people want to talk about ME ( the invitation was to invisible illnesses in general). She says there seems to be something of a scandal here ( no names or details stated).
Presenter has invited doctors to give their perspective and promised to return to the topic. Agy is speaking with a powerful description of how ME feels.
Last caller describes it as a living hell with no end in sight. Her husband has ME and cannot tolerate any sound in the house.
The surface has been scratched. It will be interesting to see if anything comes of it, in particular to see if there is pushback from the usual suspects. I messaged in about paediatrics and FII, perhaps a tad controversial.
One caller used example that a nurse or HCA poured water over her when she was in hospital because they didn’t believe in the illness’
I have just listened. That was a really powerful program. The callers spoke so eloquently about gaslighting by clinicians and in many cases family and friends, loneliness, appalling treatment, doctors saying to their face that ME isn't a real disease and so on. The presenter was really good, she listened, empathised and gave people time to tell their story while keeping things moving on so lots of people could be heard. Thanks to all who contributed, and to @Adam pwme for providing the recording.
The thing that feels like a change recently is when it’s not just 3 callers you can’t put it down to maybe just being ‘them’ or ‘unusual’. The phone ins with lots of callers (particularly combined with other coverage being more in general at the moment) have surprised me for how good / powerful a medium it can be (I agree with @Trish that the presenter can make the difference here) for showing up potential scandals or patterns going on because you get the numbers to see the themes are coming through and it starts being not about ‘the patients’ or excuses under ‘it’s a debate’ stuff but the actual ‘what’s happened’ is actually getting heard. it feels like someone listening by the end might struggle to think ‘all those different people deserved that or caused it themselves’ , although I’m always amazed by people of course
The comment on the positive aspect of social media, allowing patients to connect, share and form community, was well made. No doubt the foolish will claim Munchausen's-by-Tiktok.