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

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...
 
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JemPD said:
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', 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...
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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.
 
JohnTheJack said:
There are their social media accounts.

On Twitter:

@channel4news
@krishgm
@JaneDodgeC4
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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.
 
JemPD said:
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', 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...
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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 :heart:
 
JemPD said:
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 :rolleyes:
sometimes i just run off at the mouth without thinking... :oops:
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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.
 
JemPD said:
@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 :heart:
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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 ❤️
 
Amy101 said:
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
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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. :eek:

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 ;):)
 
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!
 
Amy101 said:
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 ❤️
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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.
 
One small admin detail, just for clarity: When referring to Sean O'Neil could people use his full name or Sean O, or similar? Gets a bit confusing to me at least about which Sean is being referred to.

MrMagoo said:
I liked the ME Dr Tarek (couldn’t see his name under my subtitles) who said something about - we don’t know how to treat dementia, we don’t know how to treat 90% of neurological disorders but we don’t say they don’t exist, sorry we’re not going to help
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Good line.
 
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 —

My Daughter developed Fnd 16 months ago, a neurological condition, a side effect is terrible fatigue. The NHS is desperately short of ppl in this area. Between the health postcode lottery, we ended up having to get it diagnosed privately and self fund all treatment, and we'd still be waiting to this day I suspect
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I am a paediatrician and i have a major interest in this area. I have seen many similar cases of catastrophic consequences in teenage usually girls. ME is nothing other than total mental and physical collapse of patients who are already on neurodevelpmental spectrum. They all get told it is in their head and that there is nothing neurological. Despite those patients are suffering from severe disturbance in neurotrasmitters in brain and their symptoms are real and devastating. I was trying very hard to bring this to the attention of colleagues with no hope although i seem to be the only person who knows exactly what it wrong with those patients and how they can be treated. Our understanding is awful. I wrote to many research groups in UK and abroad and i did not get anyone to ask me at least what do i know.
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I hope they get bored with the lack of response from research groups and find a major interest in some other area ...
 
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