Channel 4 News 19 February 2024: Features Clare Norton, mother of Merryn Crofts

@Amy101 Hello
Thank you so much for popping in at this emotional time for your family.

I can’t imagine how your mum felt when she spoke on camera about the loss of your sister and the terrible treatment that came before.

I am so grateful to your mum for her bravery and to all of you for what you do for Merryn and by extension all of us.

All my best wishes X

 

George Monbiot on Twitter, sharing the video.

"It's time that everyone stopped gaslighting ME and Long Covid patients. These are real and devastating conditions, however politically convenient it might be to deny them (and to deny benefit payments to the patients!). Those who attack and mock pile suffering upon suffering."

 

Thanks also to those who have chosen not to correct my use of the verb advocate. As a pedant, I know that the temptation would have been great if the shoe had been on the other foot. Given the frequency of this misuse of the word and the dynamism of the English language, it is perhaps only a matter of time before it becomes grammatically acceptable to advocate for somebody.

 

You’re welcome to join us early adopters anytime my friend.

 

Also, their FB page: https://www.facebook.com/Channel4News

There is also an address and phone number: https://www.channel4.com/corporate/get-in-touch
or a webform here: https://www.channel4.com/4viewers/contact-us

 

Don't have Facebook, but I used their webform to send a thank you-note. Also thanked George Monbiot for his continued support. I hope more good coverage will follow.

 

With ME Awareness Day coming up in May, should be an opportunity to build on this coverage with some kind of follow-up - you would hope.

 

Over 30,000 views on Youtube

https://www.youtube.com/watch?v=pobf0RPlJuw

 

ME Awareness Day is very important but I think it's more important to just have constant reminders throughout the year about our plight. I don't know if the science behind spaced repetition holds up, but if it does it would seem to me that the best way to really make knowledge about us stick is to have a reminder every couple of weeks.

 

Thank you to @Amy101 and your mum, who was wonderful, although it must have been hard. This was great, it feels like a turning point. I'm very emotional and full of gratitude to all involved in making this piece

 

Reaction(likely auto-generated) that I got back. I do hope that with the positive feedback about the show and the heartbreaking stories they're getting through so many channels, they will be incentivized to do follow-up stories.

 

Thanks and congratulations to everyone involved in this broadcast—I've only just found out about it by logging on here.

What struck me most was the lack of bitterness in the contributions from the two parents. I couldn't have done that without sounding bitter and angry (which would have been counterproductive of course), and it was extraordinary to watch.

It was great to see Dr Gabor too. He was doing what consultants are supposed to do—monitor their patients, whether or not they can help them feel better. It's one of the ways medicine learns about the natural course of illnesses, the variations in presentation and progression, and what strategies work and don't work. One of the reasons pwME are not taken seriously (in Britain at least) is that the majority are not managed by a consultant.

ETA: Spelling of Dr Gabor's name corrected.

 

https://twitter.com/user/status/1759751977334935647


https://twitter.com/user/status/1759966229312242087


Thanks to George for his continuing support. Let’s hope he writes another column about it.

 

The last guy in the video says that ME is a real physical illness, I thought that was considered politically incorrect?

 

He was probably mirroring the sort of language he hears from patients, as it was for a general TV audience. He might phrase things differently when speaking to fellow doctors.

 

I don’t think it’s “politically incorrect” it’s just the wrong argument to make from a scientific or medical perspective. All illness is real and physical. The point is that ME is not a psychological illness, and it does not respond to psycho-behavioural interventions.

In many cases type 2 diabetes, and many other illness which are not psychological, can be effectively treated with psychological and/or behavioural interventions. Unfortunately, ME is not one of them.

A friend of mine is currently recovering from psychosis. He appears to have responded positively to ECT. He had a psychiatric illness which was also real and physical.

These arguments are not difficult to get right, but it can be hard to use the correct language and get the right messages across with limited time in the general media for audiences who are not familiar with the issues.