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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 23-07-15, 12:15 AM   #31
shiraz
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi Prof..

Gee whizz that - in the current climate - sure is an unfortunate name, ISIS!*!! I'm terrified already.

The thing about all these pharmaceutical companies is that they are all at the end of the day just trying to make billions out of others' suffering - in it for the money and nothing else. They don't really "care". Last week on the news there was an item about a young girl with a rare disease who has been supplied for several years with a trial drug free of charge. It has benefited her. However now the free trial period is over the company are going to be charging the NHS etc for its supply. The fee they are charging? £274,000 per year per person. Result? The NHS has withdrawn the drug from its list of drugs to be used. Now I know that drug development is vastly expensive and exhausting but what is the point of such "advancements" if at the end of the day it is exorbitantly priced so that people who had "hope" are then denied its benefits? Yet again it all comes down to profits and greed and it is nothing to do with actually wanting to cure the world of its diseases. All so disheartening and maddening.

I don't blame the NHS for saying "No - we can't afford that" - they have budgets to work to and millions of illnesses and conditions to cater for - it is just not possible, unless we find that pot of gold at the end of the rainbow Greed - evil - financial terrorism, maybe the name is apt afterall........
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Old 31-07-15, 06:04 PM   #32
Allan
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Default ¡ʞǝǝʍ ɟo ʇɹos ʎʌɹnʇ ʎsdoʇ ɐ pɐɥ ǝʌ,I

.
˙ƃuıoƃ ɹo ƃuıɯoɔ ɯ,I ɹǝɥʇǝɥʍ ʍouʞ ʇ,uop 'ʞǝǝʍ ɟo ʇɹos uʍop ǝpısdn uɐ ɟo ʇıq ɐ pɐɥ ǝʌ,I ˙ʎɐpıɹℲ s,ʇı pɐlƃ ɯ,I 'ɥO

Oh, that's better - I feel as though I've had an hd implant for the day. I've been all over the place - in my head.

Mɥoods' ɥǝɹǝ ı ƃo ɐƃɐıu˙ I,ɯ ɾnsʇ ʇɹʎıuƃ ʇo soɹʇ ɐ ɟǝʍ ʇɥıuƃs onʇ qnʇ I ɔɐu,ʇ sǝǝɯ ʇo ƃo qǝʎoup ɯʎ ɔoɯɟoɹʇ zouǝ - I ɟǝǝl oʞ qʎ ɯʎsǝlɟ qnʇ ʍɥǝu oʇɥǝɹs sʇɐɹʇ poıuƃ ʇɥıuƃs ɟoɹ ɯǝ ɐup ɔɥɐuƃıuƃ ʇɥıuƃs ɐɹonup ˙˙˙˙˙ I ɾnsʇ ƃǝʇ ʌǝɹʎ ɔouɟnsǝp˙

Drugs - what drugs?
I hope every one has a sunny weekend.
.
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Old 31-07-15, 11:53 PM   #33
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Default Re: Another Cautionary Tale About Breakthrough Cures

nallA iH

?kcuf eht tahW. ?niaga s'eibbarC the on neeb uoY.

I twke it you are faking some fort of poist - lick owr fingers art two quack? Yow are fron Mers and we art frim Vonis - git a gorl a brick!! Is it twit time of thi minth?

Seriously....I feel I must apologise to one and all for my verbals this week and fair littering the board with post after post. I have been feeling under the weather - both literally and coz it is constant rain - and having to stay totally quiet whilst cooped up in the kitchen....I have resorted to mooching on the MB - there is only soo much cleaning you can do. It is in my nature to "care" for others and I find it hard to just read and not respond...though I fully understand that...silence is golden. We are all in different situations and some of us just need to read and feel part of a community, whereas others like to participate and some of us....me....have sufferred with the verbal runs to get through. Sorry folks. I am aware and shall try and zip it
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Old 01-08-15, 12:25 AM   #34
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Originally Posted by shiraz View Post
nallA iH

?kcuf eht tahW. ?niaga s'eibbarC the on neeb uoY.

I twke it you are faking some fort of poist - lick owr fingers art two quack? Yow are fron Mers and we art frim Vonis - git a gorl a brick!! Is it twit time of thi minth?

Seriously....I feel I must apologise to one and all for my verbals this week and fair littering the board with post after post. I have been feeling under the weather - both literally and coz it is constant rain - and having to stay totally quiet whilst cooped up in the kitchen....I have resorted to mooching on the MB - there is only soo much cleaning you can do. It is in my nature to "care" for others and I find it hard to just read and not respond...though I fully understand that...silence is golden. We are all in different situations and some of us just need to read and feel part of a community, whereas others like to participate and some of us....me....have sufferred with the verbal runs to get through. Sorry folks. I am aware and shall try and zip it
Don't apologise and certainly don't 'zip it'. Your humour gives some smiles and chuckles to an otherwise really sad world. I am surrounded by people but feel very alone at times. Shiraz your posts are always informative, but also funny we all need that, so keep posting and thank you. x
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Old 02-08-15, 09:26 PM   #35
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Don't apologise and certainly don't 'zip it'. Your humour gives some smiles and chuckles to an otherwise really sad world. I am surrounded by people but feel very alone at times. Shiraz your posts are always informative, but also funny we all need that, so keep posting and thank you. x
Couldn't agree more
Don't you dare zip it Shiraz. We all need a good laugh xxx
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Old 02-08-15, 10:34 PM   #36
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Default Another Cautionary Tale About Message Board Posts

.
Oh my, we’re all at it. Now I’m apologising for my recent back-to-front, upside-down, inside-out texted posts. It’s how I was feeling in my head the other day – and wondering if this is how it is for my son and hd-people all of the time. Not being able to make much sense of the world we all live in.

You see, it might look as though we are always on top form – but that’s not the case. If it seems that we’re going “over the top” it’s just that we’re on a downer – or, in my case, an upside-downer ...... and letting off steam.

************************************************** **************

I often wonder what the difference is between the simplified HDBuzz articles and the really difficult scientific papers. One is supposedly a simpler transcription of the other:

“Huge study reveals new 'genetic modifiers' of Huntington's disease” GeM-HD identifies the first solid leads in the hunt for genetic variations that affect Huntington's disease onset

“Identification of Genetic Factors that Modify Clinical Onset of Huntington’s Disease” The Genetic Modifiers of Huntington’s Disease (GeM-HD) Consortium

One is an interpretation of the other but neither is specifically useful to us. Complicated – true\false?

Happy Daze ......

.
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Old 02-08-15, 11:13 PM   #37
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi Allan, I haven't read your links as yet, but just to say it took me a while to work out your back to front upside down post.

Like the rest of us, you are human, have bad days and really bad days..... We all think of you as the professor, you are, but you are here on planet HD with the rest of us....
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Old 03-08-15, 12:46 AM   #38
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Default Re: Another Cautionary Tale About Breakthrough Cures

Dear Professor

Methinks you are....confusing me even more. There is like over 40 pages of references/names in your 2nd attachment = you are making a point right? Like your'e saying - nothing really useful to "us" in the day to [light of] day, practical sense. I agree - coz I am more confused than ever. I originally plucked up courage to come on here to find answers and a cure (I know) but this blurs lines even more, it muddies what I am seeking even more - ie - age, symptoms that appear, which, what will be worse, what can I do. It answers nothing whatsoever yet.. all those "names" and brains and...that's ya point right? Time, money, experiments, tests and surveys and....Complicated.useless.com {with them not U}

Melody...you and me are gonna fall out babes...human? He is a Martian he has been sent here to infiltrate our Venutian ways...don't be fooled by his gobbledegook charms - I have seen the movies ("Signs") - this lady is not for turning - I keep well hydrated at all times.
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Old 03-08-15, 01:05 AM   #39
Melody
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Dear Professor

Methinks you are....confusing me even more. There is like over 40 pages of references/names in your 2nd attachment = you are making a point right? Like your'e saying - nothing really useful to "us" in the day to [light of] day, practical sense. I agree - coz I am more confused than ever. I originally plucked up courage to come on here to find answers and a cure (I know) but this blurs lines even more, it muddies what I am seeking even more - ie - age, symptoms that appear, which, what will be worse, what can I do. It answers nothing whatsoever yet.. all those "names" and brains and...that's ya point right? Time, money, experiments, tests and surveys and....Complicated.useless.com {with them not U}

Melody...you and me are gonna fall out babes...human? He is a Martian he has been sent here to infiltrate our Venutian ways...don't be fooled by his gobbledegook charms - I have seen the movies ("Signs") - this lady is not for turning - I keep well hydrated at all times.

We won't fall out!
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Old 03-08-15, 01:17 AM   #40
Allan
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Default Re: Another Cautionary Tale About Breakthrough Cures

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It answers nothing whatsoever yet.. all those "names" and brains and...that's ya point right? Time, money, experiments, tests and surveys and....Complicated.useless.com {with them not U}
YE$$$$$$$!

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He is a Martian he has been sent here to infiltrate our Venutian ways...don't be fooled by his gibberish-geek charms
NOoooooo ......

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