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

@Amy101 Hello :heart:
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
 
"Those who attack and mock pile suffering upon suffering."
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Which is the real psychosocial pathology for this disease. The most important feature of which is that it is entirely secondary and contingent – that is, completely unnecessary. And, of course, cruel beyond words.

When are those responsible for creating this horrendously inhumane situation going to be held to anything vaguely resembling appropriate accountability, and permanently removed from all positions of power and influence?
 
Robert 1973 said:
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.
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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.
 
Robert 1973 said:
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.
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You’re welcome to join us early adopters anytime my friend.
 
Fainbrog said:
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.
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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.
 
Lucibee said:
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
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Dear Mr Solstice,

Thank you for contacting Channel 4 Viewer Enquiries regarding CHANNEL 4 NEWS: M.E.: Lives Devastated – And Sufferers Are Told It’s Made Up.

We are glad to read that enjoyed the coverage done and that it made difference. We appreciate your comments and feedback regarding the report so please be assured that your comments have been logged and noted for the attention of those responsible for the making of this programme.

Thank you again for taking the time to contact us here at Channel 4, we hope you continue to enjoy our programming.
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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.
 
DigitalDrifter said:
The last guy in the video says that ME is a real physical illness, I thought that was considered politically incorrect?
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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.
 
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