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

By my memory Sean said the inquest for Maeve his daughter is in July, then Decode ME is due some results in August - we could have a fair amount of public awareness this summer.

 

Edited to add: as i said earlier i think it was excellent and everyone did amazingly, this is just an additional observation, not a subtraction.

I did notice however that they featured a doctor (who spoke very well - I'm not criticising) in 'rehabilitative' medicine or something... and showed the patient in a meeting with a consultant & an OT.

& i did think, darkly... 'hmmm i wonder if they are recommending some form of GET by another name (edited to add - about which i was entirely wrong! - see Amy's post below)

and 'hmmm i wonder how many ME patients in the UK have ever seen a consultant'....

most of the clinics dont even have a doctor overseeing them, let alone a consultant. It gives a rather more rosy picture of the "care" we receive. - not suggesting that didnt fit well with the message that its a legitimate serious condition, but... y'know, just sayin...

 

The coverage was just good and I don't think this is something laypeople will pick up on, so it's okay imo. I get what you mean though, but I think it speaks more to the lack of options to show "something". There's nothing to show because nothing has been done for us.

 

Liked, retweeted and left messages on both twitter and youtube. Had to contend with just writing ty at times, but as I understand it leaving a comment is the most effective way of boosting on both youtube and twitter.

Edited to add that I've just left the video to run on youtube earlier tonight because I wasn't fit to watch. Letting it run till the end also apparently does wonders to boost a vid.

 

Hi, it’s Merryn’s sister Amy here. I rarely log on but do still read quite a lot but wanted to clarify something about Dr. Gabor who was featured tonight. Dr. Gabor was actually the NHS doctor who we were told about and thankfully saw Merryn and gave her the diagnosis of ME. He was wonderful with her, truly listened and wanted to help. He tried to communicate with the doctors closer to home during the first three years of her illness but due to him being outside their trust, they discarded all he said to them. He definitely would never advocate GET etc and very much told Merryn to pace and just tried to help advise. He was a really good doctor to Merryn and one of the kindest things he did was just listen and understand

 

@Amy101 thank you so much for clarifying about Dr Gabor, its good to hear of such a great Dr working in the NHS, hating the fact that Merryn's other drs didnt listen to him.
In light of this i shall edit my post regarding him. I hadnt realised he had any connection to Merryn i'd thought it was just some local dr C4 had found. Which in hindsight was stupid of me, sorry.

Huge thanks to your mother for doing this, it must have been incredibly hard to go on tv making herself, and you all, so vulnerable, so courageous. Thanks for all the amazing advocacy she & you all contiue to do

 

oh i completely agree, i was just commenting.
I dont know why i even wrote that comment now really, since it served no purpose whatsoever
sometimes i just run off at the mouth without thinking...

 

Just because we're paranoid...

In all fairness this disease has made it hard to trust people so I'm glad @Amy101 set the record straight. A lot of the people I've seen for ME/CFS had a double agenda or spoke with a forked tongue. It appears Dr. Gabor was one of the good guys though. We need more of them.

 

Oh not stupid at all, I was surprised they didn’t say he had seen Merryn when they introduced him and I can fully understand why someone would have thought that. I think the vast majority of the ME community would have assumed the same thing.

I will pass on the comments to my mum tomorrow, she will be so pleased that people are happy with what was broadcast. We worry how things may change in editing and so on so I’m glad this hasn’t caused any damage or upset ❤️

 

Happy?? i'd say that was an understatement, i never had a tv slot about ME that i wanted to share with everyone i know before! She did amazingly well to speak so eloquently... so authentic & from the heart, but also very articulate.

I cant imagine the awful waiting to see what the editors will do and how they might misrepresent what you say! Crumbs.

Kudos to channel 4 for doing a great job of that & not making a mess of it. I cant help thinking they had some good content to work with though

 

perhaps they would have but those seconds it would have taken were better spent on more important content.. a good editing decision id say

 

That’s a very good point and you’re probably right. They fit a lot in and did a very thorough job. They took a lot of time with it. It came about as a member of the production crew has a loved one who has ME. There seems to be a growing number of people working in the media who are affected by ME in some way. This can definitely only be a very good thing in helping spread awareness of ME and the reality of it, I hope!

 

It really was so measured and sensible. What person seeing it could disagree that people who evidently have a physical disease should be disbelieved?
Well, I can think of a few, and their time at the top has already passed.

 

Amy, thank you so much to you and your family for continuing to advocate for people with ME. It means so much to so many of us.

Very slowly the sands are shifting. At some point I hope there will be a tipping point. I’m hoping that might be Maeve’s inquest.

 

Closing in on 20k views now.

 

Merryn’s mother and Maeve’s father spoke very well. I would have been in bits trying to get the points across but they did great while faced with huge grief.

Like many others, I kept waiting for the other shoe to drop and see SW or one of his minions burst on stage in a clown costume to explain how stupid and dualistic we all are and how mental conditions are just as real and devastating. But it never happened.

Thanks to everyone involved.

 

The comments on YT certainly hammer home the theme of so many lives destroyed. Sobering reading from just the snapshot who replied.

Probably veering off-topic, but I thought these two comments were a worry —

I hope they get bored with the lack of response from research groups and find a major interest in some other area ...

 

Channel 4 Facebook post, if anybody wants to share that.

Code:

https://www.facebook.com/Channel4News/videos/1453632108569430/