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It probably is changing, but suspect these strange people have always existed, social media has merely provided a tool which allows them to gather with like minded misfits which gives them some feeling of collective power.On a slightly lighter note (I must have too much time on my hands) but if you look at all those on the FB page who have been brave enough to put their own picture on their profile, they rather worryingly all have a very similar "look". Almost as if they are related via stupidity
briang9 said:
and another classic from the FB page...
"What about one of their parents home one of themselves gotta have a house tho I can't see what's wrong with a flat I still think it's to stop them from getting the meds from America just in case they planned on giving it to Charlie at home"
Is that linked to the magic milkshake medicine?, I have never heard of a treatment thats its efficacy relies on the type of building the patient lives in."What about one of their parents home one of themselves gotta have a house tho I can't see what's wrong with a flat I still think it's to stop them from getting the meds from America just in case they planned on giving it to Charlie at home"
PorkInsider said:
Wiccan - look at the posts from 00:51:28 onwards here:
https://www.mumsnet.com/Talk/am_i_being_unreasonab...
This must be what the "debunking" is about.
ETA: found the original bit now.
I don't want to make this thread about Mumsnet but rhought Wiccan might like to see this, like PH, Mumsnet has the sensible and the crazy and in the main, their posts about Charlie Gard have been very line with posts herehttps://www.mumsnet.com/Talk/am_i_being_unreasonab...
This must be what the "debunking" is about.
ETA: found the original bit now.
Edited by PorkInsider on Wednesday 26th July 13:32
BoreofBabylon I went to read that Piston Heads post. I didn't understand a word of it but you clearly have no cause to dismiss it as "mansplaining". He wasn't patronisingly dumbing down an explanation for females on the assumption that they are too dim to understand long words. He was simply explaining something complicated on a thread (largely for other men). And he didn't say he was a clinician either. I got the impression that he worked in genetic research - which, of course, provides data for clinicians. I have no idea whether his explanation is correct, or indeed whether he's an accredited scientist or a fantasist with a GCSE in Human Biology - but that he is a man who explained something for lay people does not make him guilty of "mansplaining
Perhaps the 'debunking' is related particularly to this post from Sashkin Tue 11-Jul-17 02:59:50
https://www.mumsnet.com/Talk/am_i_being_unreasonab...
"The pistonheads posts are just word salad. They make grammatical sense but are medically completely meaningless. He is quite wrong about oedema being "a sign of protein being released in liver failure" (the hypoalbuminuria in liver failure is due to impaired synthetic function rather than increased protein loss, however most oedema in liver failure is due to salt retention) and also wrong about diuretics and renal failure (you might need to use higher doses, but diuretics still work right up until the kidneys pack up completely). The ATP section I just have no idea what's he is trying to say at all.
Honestly the guy sounds like he's just read a few Wikipedia articles. I don't think he has any specific medical background - he's getting quite basic undergrad stuff wrong. This case has had quite enough randoms claiming to be metabolic medicine experts already, let's not encourage any more."
Just another 'Facebook expert'?
https://www.mumsnet.com/Talk/am_i_being_unreasonab...
"The pistonheads posts are just word salad. They make grammatical sense but are medically completely meaningless. He is quite wrong about oedema being "a sign of protein being released in liver failure" (the hypoalbuminuria in liver failure is due to impaired synthetic function rather than increased protein loss, however most oedema in liver failure is due to salt retention) and also wrong about diuretics and renal failure (you might need to use higher doses, but diuretics still work right up until the kidneys pack up completely). The ATP section I just have no idea what's he is trying to say at all.
Honestly the guy sounds like he's just read a few Wikipedia articles. I don't think he has any specific medical background - he's getting quite basic undergrad stuff wrong. This case has had quite enough randoms claiming to be metabolic medicine experts already, let's not encourage any more."
Just another 'Facebook expert'?
HTP99 said:
briang9 said:
Vandenberg said:
I always said that care in the community was a bad idea, bring back the asylums.
and another classic from the FB page..."What about one of their parents home one of themselves gotta have a house tho I can't see what's wrong with a flat I still think it's to stop them from getting the meds from America just in case they planned on giving it to Charlie at home"
"Why don't they take the child to their parents house, although a flat would also be OK. But I think they won't let them because they may try and get the medication from America and give it to him at home"
Yes folks...there is someone out there who actually thinks they can just carry little Charlie to their car, hide at a close relatives house and start the magical American treatment.
Nope, I can't quite comprehend that particular level of stupid either.
Having read the latest press release today from GOSH ( http://www.gosh.nhs.uk/file/23746/download?token=g... ) and taking it at face value, I'm rapidly running out of any sympathy for the parents whatsoever. They are going to look back on these days in the years to come and wish they'd just spent more time with their son wherever it was, rather than arguing via solicitors.
Every minute that passes, that child is suffering more. I cannot understand how they cannot get their heads round that now, nor can I comprehend how frustrated the GOSH doctors must be having to be diplomatic in the face of such treatment.
Every minute that passes, that child is suffering more. I cannot understand how they cannot get their heads round that now, nor can I comprehend how frustrated the GOSH doctors must be having to be diplomatic in the face of such treatment.
Live(ish) update of the court proceedings here: http://news.sky.com/story/live-parents-learn-if-ch...
PurpleTurtle said:
(another) great post Wiccan, thanks for keeping those of us less enlightened in the minutae of the subject matter up to speed.
I was commenting to Mrs PT as we watched Chris Gard's very sad speech on the news last night, that none of this would have happened 15 yrs ago, because there was nowhere near as wide a reach of social media and the internet.
The parents have felt empowered to challenge GOSH due to a couple of normal average people being able to raise £1.3 million rather quickly, thanks to the cult of 'share if you agree'.
Lots of bandwagon-jumpers have chucked in a tenner under what now appear to be false pretences.
It was heartening to hear that they plan to use the money raised to help other children. One hopes that is by way of established, proven medicine.
As someone pointed out the other day (apologies if it's been re-addressed), what will happen now to this money in terms of the law of trusts, charities, etc?I was commenting to Mrs PT as we watched Chris Gard's very sad speech on the news last night, that none of this would have happened 15 yrs ago, because there was nowhere near as wide a reach of social media and the internet.
The parents have felt empowered to challenge GOSH due to a couple of normal average people being able to raise £1.3 million rather quickly, thanks to the cult of 'share if you agree'.
Lots of bandwagon-jumpers have chucked in a tenner under what now appear to be false pretences.
It was heartening to hear that they plan to use the money raised to help other children. One hopes that is by way of established, proven medicine.
Edited by PurpleTurtle on Tuesday 25th July 10:43
Money which is put into a trust set up for a specific purpose cannot ordinarily be used for any other purpose. The usual course of action would be for the individual donations to revert in law to the donors if the original purpose ceases to exist or it's execution is frustrated.
KTF said:
"Judge orders that it’s Charlie’s best interests to be moved to hospice and extubated unless other plans can be made before 1200 tomorrow."
Finally, a decision. Charlies Army are going to go into overdrive between now and 1200 tomorrow though.
No doubt finding out where he'll be and starting a vigil...Finally, a decision. Charlies Army are going to go into overdrive between now and 1200 tomorrow though.
Judge: name of hospice will remain private. The time at which he will go will remain private. Anyone who publishes date and place breaks law
KTF said:
"Judge orders that it’s Charlie’s best interests to be moved to hospice and extubated unless other plans can be made before 1200 tomorrow."
Finally, a decision. Charlies Army are going to go into overdrive between now and 1200 tomorrow though.
The parents seem to have forgotten this:Finally, a decision. Charlies Army are going to go into overdrive between now and 1200 tomorrow though.
University College London professor emeritus Ian Kennedy said:
"We need to remind ourselves that parents do not have rights regarding their children, they only have duties, the principal duty being to act in their children's best interests."
"If we are concerned with the language of rights, it is, of course, children who have rights; any rights that parents have exist only to protect their children's rights."
"If we are concerned with the language of rights, it is, of course, children who have rights; any rights that parents have exist only to protect their children's rights."
ou sont les biscuits said:
I'm truly lost for words. I can't pretend to be able to understand how Charlie's parents feel, but it is clear from everything that has been published about the case that the poor little bugger is feeling pain, and in intensive care. How moving him away from a palliative care regime in a hospital monitored by Doctors and Nurses to his home could be in his best interests is beyond me.
It clearly isn't. As people have pointed out though; for a long time this has been looking as though it's about the "rights" of the parents rather than those of the child or their responsibilities towards him. Ekona said:
Having read the latest press release today from GOSH ( http://www.gosh.nhs.uk/file/23746/download?token=g... ) and taking it at face value, I'm rapidly running out of any sympathy for the parents whatsoever. They are going to look back on these days in the years to come and wish they'd just spent more time with their son wherever it was, rather than arguing via solicitors.
Every minute that passes, that child is suffering more. I cannot understand how they cannot get their heads round that now, nor can I comprehend how frustrated the GOSH doctors must be having to be diplomatic in the face of such treatment.
I completely agree. Cannot believe how they are acting, they are fools.Every minute that passes, that child is suffering more. I cannot understand how they cannot get their heads round that now, nor can I comprehend how frustrated the GOSH doctors must be having to be diplomatic in the face of such treatment.
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