Things that piss you off that shouldn't

[BOF]

31 minutes ago, il_serpente said:

What, has another installation of the fappening been released?

Actually, yes ...

[Seat68]

I went running on Monday. When I woke on Tuesday I had a problem with my left knee. When rising from sitting down the left hand side area around my knee hurt. No issues when walking, just rising from sitting. It got more painful last night to the point I cant sleep. 

[mottaloo]

5 hours ago, Seat68 said:

I went running on Monday. When I woke on Tuesday I had a problem with my left knee. When rising from sitting down the left hand side area around my knee hurt. No issues when walking, just rising from sitting. It got more painful last night to the point I cant sleep. 

I get this too. The PT lad I'm seeing at the gym (but not in a ghey way) is always telling me i need to stretch my quads before (and after) i go for a run or circuit train. A foam roller helps a lot.

[Seat68]

I guess it’s one for the running thread, but I have almost weekly problems with my feet or legs, and I never ever warm up. I literally get out of the car, meet a friend and we run. I need to learn from this and start warming up.

[choffer]

On 25/07/2017 at 19:24, Genie said:

It's a very odd situation, from the outside it's hard to see which party is being so unreasonable. Unsurprisingly the relationship between the boys parents and the hospital is completely shot and they only talk via lawyers.

At the risk of dragging this up again, someone just sent me a link to GOSH's position statement. The downloadable PDF makes interesting reading and shows a particularly good insight into details which the media have kind of glossed over. It does seem to dispel a lot of what the parents have said.

I have no concept of what they have been / are still going through but it does appear they have to shoulder a lot of blame for creating a storm when the battle was already lost (or never worth fighting).

Edited July 27, 2017 by choffer

[Genie]

2 minutes ago, choffer said:

At the risk of dragging this up again, someone just sent me a link to GOSH's position statement. The downloadable PDF makes interesting reading and shows a particularly good insight which the media have kind of glossed over. It does seem to dispel a lot of what the parents have said.

I have no concept of what they have been / are still going through but it does appear they have to shoulder a lot of blame for creating a storm when the battle was already lost (or never worth fighting).

Again, I'm not that close to the story nor do I know what its really like to be in their position (thank god) but it seems like they've become more consumed with their feud with GOSH than actually putting the little boy first and spending every single last moment with him and making him as comfortable as possible.

I know its a bit of crass suggestion but how much are all these legal challenges costing? Is it all publicly donated money they are spending on them?

[choffer]

1 minute ago, Genie said:

Again, I'm not that close to the story nor do I know what its really like to be in their position (thank god) but it seems like they've become more consumed with their feud with GOSH than actually putting the little boy first and spending every single last moment with him and making him as comfortable as possible.

I know its a bit of crass suggestion but how much are all these legal challenges costing? Is it all publicly donated money they are spending on them?

That's the sense I get but as with you, I've not really read much detail on it until I checked out the GOSH statement.

[Chindie]

Comment in the Indie from a paediatrician.

Quote

The tragic story of Charlie Gard is slowly but surely reaching its sad denouement yet a huge number of questions have been raised that remain unanswered. In their moving statement on Monday, Charlie’s parents asserted that had the proposed experimental treatment been initiated earlier in the year, there might have been a chance of him recovering to a point where he may have had a “normal” life. They also stated that this view had been supported by Professor Hirano from New York and other overseas doctors, a point of view in direct contrast to that of Great Ormond Street Hospital (GOSH), who felt that the underlying damage already sustained by Charlie was irreversible as long ago as January. As a paediatrician, I'd like to examine the truth behind those claims.

At first glance, it could be interpreted that the inaction of GOSH resulted in Charlie’s one chance at a normal life being cruelly snatched away from him. This is clearly the view of many individuals, given the abuse and intimidation that has been directed at GOSH staff over the last few weeks. Bear in mind however that in January, the only medical professionals in a position to fully assess Charlie and have enough information to make informed judgments on his prognosis were those at GOSH. GOSH also asked other external, experienced paediatricians to assess him independently, including a metabolic specialist from Southampton whom Charlie’s parents had wanted to assess him. All of these professionals agreed with the GOSH view that his underlying condition had progressed to a point where any intervention would be futile, only serving to prolong the process of dying rather than improving his quality of life.

The world of rare mitochondrial disease research is small and the experts in the world-renowned centres know each other and communicate with each other regularly. It has been reported that GOSH approached Professor Hirano in January 2017 to explore experimental nucleoside therapy (NBT) and invited him to come to London to assess Charlie at that time. GOSH were preparing an ethics committee application to seek permission to use NBT for Charlie when he deteriorated in January.

What was the basis of such a huge divergence of opinion on Charlie’s baseline condition between GOSH and Charlie’s family and the overseas teams? Charlie’s parents have stated that they believe that there was no evidence of “irreversible brain damage” in January. Indeed, he had an MRI scan of his brain that has been described as structurally normal. A normal scan does not mean that a brain is working normally. Charlie was having severe fits that indicated that the function of his brain was compromised and, with knowledge of the natural history of his condition, GOSH recognised that he had reached a point where even with experimental treatment, the likelihood of any significant improvement in his condition was negligible.

Charlie’s parents disagreed and were supported in this by Professor Hirano who provided written statements in support of his parent’s position to be used as evidence in the various court hearings. After the courts’ rulings in favour of GOSH, Hirano then stated that he had new evidence that had not been considered previously which led to the recent return to court. During this process, it transpired that Hirano had never physically assessed Charlie nor had he had sight of his medical records and investigations, including the second opinions of doctors from outside GOSH. It was also revealed that potentially he stood to gain financially from the use of NBT. His evidence flagged up potential hope for the future treatment of mitochondrial diseases but there was nothing to suggest that it could help Charlie following reassessment of his condition.

It is entirely understandable that parents would cling on to any small fragment of hope that they might find; in fact it would be unusual if they didn’t. I am deeply uncomfortable with a clinician giving a confident opinion on potential outcomes and quoting percentage chances of success without having had sight of all the objective information available. Only GOSH, Charlie’s parents and the respective legal teams had seen everything; all others with opinions, including myself, had only seen a limited amount of second-hand information and much of the time this had not been seen in context. Thus any such opinions could only be speculative.

Yet in spite of this, Hirano was happy to give a concrete opinion in a case where there was a possibility of financial gain for him in using the treatment. The potential conflicts of interest are clear to see but, beyond the ethical debate, the wealth of misinformation that led to death threats towards clinical staff and to politicians jumping on a bandwagon to use Charlie’s dire situation for their own ends could have been avoided with greater transparency around these issues.

If the apparent causes for hope given to Charlie's parents were in fact without solid foundations, then this would be inexcusable. GOSH will have tried at all times to have been as honest and open as possible in their communications with Charlie’s family.  Doctors do not like to give bad news and parents do not like to hear it. Thus, when a more optimistic view is put forward human nature would lead any of us to prefer that view to the more pessimistic one and Charlie’s family naturally looked for hope and clung onto what was ultimately a mirage. As a consequence, I imagine they may always have a nagging doubt that they might not have done their best for their son when in reality the outcome was always destined to be dire. The best that can be hoped for now is that Charlie has a dignified and peaceful death, his family can be left to grieve for him and, in time, reach some kind of peace.

Unfortunately, his circumstances were never good, fate has dealt him a hopeless hand. He was never going to survive.

Also, questions would need to be asked of Hirano's involvement.

The whole thing shouldn't piss me off, but it does.

Edited July 27, 2017 by Chindie

[choffer]

Best summary I've seen of the situation so far.

[mottaloo]

Just got back from the gym and the girl who was next to me on the treadmill had it elevated a fair bit. Very good, work those calves good and proper i thought, but no....she negated the incline by hanging on to the bar in front of her. Yeah, ok perhaps she was trying to measure her heart rate by grabbing those sensors but you don't need to keep hold of them to get a reading. 

It shouldn't piss me off but it did 

[StefanAVFC]

2 hours ago, Genie said:

Again, I'm not that close to the story nor do I know what its really like to be in their position (thank god) but it seems like they've become more consumed with their feud with GOSH than actually putting the little boy first and spending every single last moment with him and making him as comfortable as possible.

Spot on. Chindie's article too. The above, combined with them wasting the limited resources of GOSH during their fight is why I called them selfish.

Liars was perhaps a bit strong as they've clearly been misled by the yank hack and the nonsense around him ever being 'normal' again and how he likes watching tv was more delusion than anything. Delusions of parents of a desperately sick child whose delusions have unfortunately had pretty shitty consequences on GOSH and have been scapegoated to push particular poltical agendas, especially by the American right.

The whole situation is awful.

[Mark Albrighton]

Not wanting to sound flippant about a terribly sad story, but every time I enter this thread, the initials GOSH leap out at me and my brain is reading it as "good sense of humour" and it's taking me a few seconds to realise what's being discussed.

[V01]

Good of sense humour?

[Paddywhack]

A bloke at work was telling me about his idea to open an Indian restaurant on a canal boat and I interrupted to tell him it should be called "The Onion Bargey". He kind of it ignored me and carried on telling me about how it would work.

I interrupted again, "as in Barge, like a boat" and he said he "yeah I got it" and carried on talking. 

Perhaps it's a bit obvious, but I expected a bit more than that. High five or something..

[StefanAVFC]

A bloke at work was telling me about his idea to open an Indian restaurant on a canal boat and I interrupted to tell him it should be called "The Onion Bargey". He kind of it ignored me and carried on telling me about how it would work.

I interrupted again, "as in Barge, like a boat" and he said he "yeah I got it" and carried on talking. 

Perhaps it's a bit obvious, but I expected a bit more than that. High five or something..

[choffer]

A bloke at work was telling me about his idea to open an Indian restaurant on a canal boat and I interrupted to tell him it should be called "The Onion Bargey". He kind of it ignored me and carried on telling me about how it would work.

I interrupted again, "as in Barge, like a boat" and he said he "yeah I got it" and carried on talking. 

Perhaps I'm a bit oblivious, but I expected a bit more than that. High five or something..

[Paddywhack]

Man, I'm going to have to tell this guy at work he has competition 

[snowychap]

Sounds like there's going to be some argy-bargy.

[mjmooney]

Was he an Irish bloke? 

He could open his own Indian restaurant, and call it "Bombay Mick's". 

[StefanAVFC]

Super off peak return from Lichfield to brum is 6.20. Not the subject of my ire but a pisstakr none the less...

this ticket means you cant get a train between 16:35 and 18. Fine. But you cant even get past the ticket barriers until 18. Meaning if your train is at 18:01 you're screwed (especially how far the barriers are from the platforms at new street.