Charlie Gard 10

[user1498911470]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

Starting now as 9 will fill up quickly.

I have a feeling rumer's mum is a mumsnetter?

I definitely remember a thread about a baby with edwards, mum refused tfmr and the baby lived a few months. Sure it was rumer.

I'll see if i can search on my phone..

TheWeeWitch, they should have a different colour that does not clash with Autism awareness,talking of which my monster flooded the blooded bathroom this evening :0(

TheWeeWitch yeah I saw that! I'm really not sure I think they think it's real going by the aren't London cold hearted posts..plenty of stock footage of the London Eye they could use however.
Someone also took a picture of Blackpool Tower. Ain't blue for Charlie as they said no but still making it count. Find this part so bizarre...along with everything else

bloody that should have been

I meant any info zeezeek because what you post is so interesting and please don't stop!

LetsGoFlyAKiteee,blackpool tower lights yp blue anyway,and that will be some tit in blackpool that posted that lol, I noted that one of charlies army owns a candy cart business in Blackpool. So I will remind myself never to use it.

Hollyhocks - thank you for those links.

I think Rumer's mum is a mumsnetter. Iirc, the baby had a chromosome trisomy, 18 or 13.

holly rumer's mum is a mumsnetter and have posted their heartbreaking experiences.

To Rumer's mum flowers

Here's a thought. What if trolls are posing on CA and purposely directing the group to write such vile posts.?

www.mumsnet.com/Talk/woolly_hugs/2584934-Beautiful-baby-Rumer-We-are-making-a-blanket-for-TheDisillusionedAnarchist-can-anyone-help-us

Threads here.

I think key here was DA always seemed so dignified, and worked with the medics to get the best time with her child. She genuinely did what was best for rumer.

If Rumas mum is on here I would like to say to her I was extremely moved by her posts that Hollyhocks linked to

I must say I do enjoy reading the contribution of American mumsnetters in this debate. Very interesting.

muckypup73 oooo is it. Learn something new. Did find the praise of well done shows we won't be silenced interesting..all they did was stop and take a photo hardly anything hardcore...

And someone after being turned down emailed them pictures of other places being lit up at short notice..oh dear.

The drug trial at Northwick Park

I also apologise for misspelling Rumers name

I think lots of people forget, but David and Samantha Cameron and Gordon and Jenny Brown each had young children who have died.

In this article the Camerons repeatedly praise the care their severely disabled son received on the NHS.

"The Camerons were "hugely grateful" to the NHS care workers who "not only did their utmost for their son this morning but have helped every day since he was born", he said."

"Cameron's passionate commitment to the NHS – which has marked him out from other Tory leaders – was largely influenced by the contact he has had with his son's carers."

Goes a little way to undermine the "if Charlie was a rich person's baby he'd have proper care" argument.

www.theguardian.com/politics/2009/feb/25/ivan-cameron

I don't think the people posting the images believe it, I'm sure they know perfectly well as they must have searched the internet for them. What the others believe is, well, anything they're told as far as I can see.

Sorry, Mrs Brown is Sarah. The child was Jennifer. Go to bed Witch!

I meant any info zeezeek because what you post is so interesting and please don't stop

Sostenueto. Thank you and to Logical and others who have been kind.

I think that we scientists often live in bubbles where most of the people we socialise with are other scientists, so we get into the habit of talking in jargon and often not realising that our studies involve real people and are not just cases and subjects. I am guilty of that, I know. I'm not Clinical, but spend a lot of time looking at data relating to actual people, but unlike the GP I don't see the person and only see the set of symptoms or whatever in that line of the spreadsheet (an example).

Because we exist in that world we find it difficult to explain ourselves to the general population.

What I'm getting at is that I think that there is a general lack of education and awareness of what medical research is really like and what it's limitations are. This is very apparent from the CA Facebook pages where unrealistic numbers are taken as gospel.

It is a worrying trend and whilst your average MNetter has an enquiring mind, there are a lot of people out there who do not. It just feels like society is dumbing down and as that happens scientists are moving further away from society and becoming a clique, so the general population gets its science from the internet and the media and other uninformed and biased sources and not from us. Rambling now. But I definitely think that scientists are to blame for allowing the media to distort our findings.

Sostenueto - Here's a thought. What if trolls are posing on CA and purposely directing the group to write such vile posts.? That’s something I’ve wondered about. I have doubts about the former social worker whose CA post was quoted by muckypup. It starts off being very factual about the role of guardian but ends with a conclusion that seems to come out of the blue. The FB profile of that person is quite “interesting”. So there could well be wind-up merchants on the CA FB page, which might explain the huge online presence versus the tiny RL presence.

But what would be the intent in doing that? (trolls)

Yeah does make you wonder! Especially as so many posts make you read them in disbelief and once one person starts them everyone agrees. Really hope that is the case for some!

I am also a scientist.

I worked on a drug that was in stage 4 clinical trials. I was a bright, shiny eyed phd graduate, and was given this project.

On paper, this drug was fucking amazing. It doubled the life expectancy of lung cancer patients, killed cancer in the lab and in mice*.

Got to my first conference, and was horrified to find all the clinicians hated it. Side effects were apparently horrible, it caused horrendous pain at the administration site, made the patients really unwell, all for an extra 6 months. It was pretty unanimous that the patients were better off without it.

*btw, you can cure mice of cancer really bloody easily. It just never translates to humans.

Interesting to hear from scientists.

So these trolls might try and wind up CA. Is that what you mean? As in suggesting the guardian was biased due to dignity in dying etc. But...why?