XMRV about to break UK Media
- Thread starter VillageLife
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Oh! What a pity after you were putting all that work in!
But the Daily Mail story (see the posts above) has a working comments thing - worth a post. They actually refer to the Alter paper though not by name - ridiculous that the Daily Mail is more up to date on the state of research than the BBC.
But the Daily Mail story (see the posts above) has a working comments thing - worth a post. They actually refer to the Alter paper though not by name - ridiculous that the Daily Mail is more up to date on the state of research than the BBC.
It was v quick, I just googled!
That's true what you say about the wider implications. I think the BBC story - that there was a single study that hasn't been replicated - needs its facts challenging, though.
There are some good comments on the Telegraph story.
That's true what you say about the wider implications. I think the BBC story - that there was a single study that hasn't been replicated - needs its facts challenging, though.
There are some good comments on the Telegraph story.
The Daily Mail do post letters about ME. so if you want to write one it's:
letters@dailymail.co.uk
enclosing address and phone number
letters@dailymail.co.uk
enclosing address and phone number
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Great that there is coverage of this, but openly lieing on two fronts is just not acceptable.who was this NHS Spokesperson ? speaking on behalf of the NHS
Hey how about a letter of protest to the NHS and the bbc showing there is indeed evidence of a retro viral link that wasnt mentioned on the bbc link, and not addmited to by the NHS ?
( Notice they are carefull to say HERE IN THE UK ) But what of the 50 positives mentioined at the XMRV conferance by Judy M with Stoye in attendance speaking of the ASHFORD 50 UK STUDY. Not exactly no evidence, unless the words of Judy are regarded as meaningless. And at this stage of the game with all the uncertainties of why there is negative studys happening. Not exactly a thorough assesment that is it ? as Cort has pointed out 6 positive and 8 negative studys isnt exactly no evidence, Infact its evidence that something is going wrong with the testing be it contamination, poor cohort selection, poor storage of blood, MLVs not being detected when there assay is looking for XMRV. ( Alter may have shown mutations are more common than we first realized ) And god knows how many more reasons possible to explain the negative studys, as opposed to the positive ones
But no evidence ? i think not
The NHS it appears to me are trying to avert panic, and downplay the impotance of this, ( buisness as usual ) to avert interest, and public pressure, on a condition that Mr Wessley made go away for them ( the NHS )
Only for those pesky americans to stir it all back up again.
Cheers BTW we are in your debt.
Hey how about a letter of protest to the NHS and the bbc showing there is indeed evidence of a retro viral link that wasnt mentioned on the bbc link, and not addmited to by the NHS ?
( Notice they are carefull to say HERE IN THE UK ) But what of the 50 positives mentioined at the XMRV conferance by Judy M with Stoye in attendance speaking of the ASHFORD 50 UK STUDY. Not exactly no evidence, unless the words of Judy are regarded as meaningless. And at this stage of the game with all the uncertainties of why there is negative studys happening. Not exactly a thorough assesment that is it ? as Cort has pointed out 6 positive and 8 negative studys isnt exactly no evidence, Infact its evidence that something is going wrong with the testing be it contamination, poor cohort selection, poor storage of blood, MLVs not being detected when there assay is looking for XMRV. ( Alter may have shown mutations are more common than we first realized ) And god knows how many more reasons possible to explain the negative studys, as opposed to the positive ones
But no evidence ? i think not
The NHS it appears to me are trying to avert panic, and downplay the impotance of this, ( buisness as usual ) to avert interest, and public pressure, on a condition that Mr Wessley made go away for them ( the NHS )
Only for those pesky americans to stir it all back up again.
Cheers BTW we are in your debt.
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ways it seems. so it seems that giving blood NOW MAKES US SOMATISE MORE strange condition indeed.Thanks for pointing that out
There seem to be two Telegraph articles,
this earlier one with comments http://www.telegraph.co.uk/health/healthnews/8050032/ME-sufferers-banned-from-giving-blood.html
this later one with no comments yet http://www.telegraph.co.uk/health/healthnews/8050655/ME-patients-banned-from-giving-blood.html
this earlier one with comments http://www.telegraph.co.uk/health/healthnews/8050032/ME-sufferers-banned-from-giving-blood.html
this later one with no comments yet http://www.telegraph.co.uk/health/healthnews/8050655/ME-patients-banned-from-giving-blood.html
BBC Radio 4 "Today" programme - Friday October 8th.
Here is a link to the BBC Radio 4 "Today" programme from this morning:
http://news.bbc.co.uk/today/hi/today/newsid_9072000/9072494.stm
The mention of a UK blood donation ban for ME patients is at 2:08:04 into the programme (ie just after 2 hours in,) for about 50 seconds and includes a comment from Dr Shepherd at the MEA.
We are not listed in the run down as a major news story, but if you click on the link above and then look down the right hand side to where it says: Friday 8th October, there is a pink 'loudspeaker' button icon which says: "Listen to programme in full".
Click this and scroll to 2hours, 8 minutes and 4 seconds in - and there we are ...
Here is a link to the BBC Radio 4 "Today" programme from this morning:
http://news.bbc.co.uk/today/hi/today/newsid_9072000/9072494.stm
The mention of a UK blood donation ban for ME patients is at 2:08:04 into the programme (ie just after 2 hours in,) for about 50 seconds and includes a comment from Dr Shepherd at the MEA.
We are not listed in the run down as a major news story, but if you click on the link above and then look down the right hand side to where it says: Friday 8th October, there is a pink 'loudspeaker' button icon which says: "Listen to programme in full".
Click this and scroll to 2hours, 8 minutes and 4 seconds in - and there we are ...
Here is a link to the MEA's Dr Shepherd's full interview with Radio 4 - what a shame the BBC didn't use the whole interview (see post above for radio programme link.)
http://www.meassociation.org.uk/?p=2324
Well done to Dr Shepherd and the MEA for calling it as it is!
http://www.meassociation.org.uk/?p=2324
Well done to Dr Shepherd and the MEA for calling it as it is!
Is it just me or does the interviewer seem to want to get away from the subject very quickly once Dr Shepherd starts to mention causing panic amongst the population etc?
surely mother and baby have shared the same blood for several months so the risk of passing it on by other means is moot?
They also a longer talk about it at the 54 min mark.
http://www.meassociation.org.uk/?p=2324
http://www.meassociation.org.uk/?p=2324
Thanks LJS - missed that bit - thought the later snippet was our lot!
Wow, Dr Shepherd really does the whole works here! Almost like the reporter couldn't quite get his head around it - certainly the significance didn't quite seem to sink in for him. (Perhaps he'll go home tonight and start thinking about the implications ...)
Wow, Dr Shepherd really does the whole works here! Almost like the reporter couldn't quite get his head around it - certainly the significance didn't quite seem to sink in for him. (Perhaps he'll go home tonight and start thinking about the implications ...)
That was a very odd moment! You would have thought that a journalist would have started asking follow-up questions there. That whole exchange in which Dr S said it's an HIV-like virus and mentioned public panic sounded as though it took the interviewer completely by surprise. Good job it was a live interview! I'd have been worried about it being edited out, otherwise.
I think it's interesting that what might seem to most healthy people like a not-very-interesting story (that PWC can no longer donate blood, yawn) has perhaps seemed to the media to be worth reporting because the ME Association have produced some interesting (and therefore more newsworthy) conflict. I was suprised to see the story reported at all, let alone in this depth. I think the MEA have done really well here. I hope this episode has laid the ground for further coverage of XMRV as research continues over the next few months.
I think it's interesting that what might seem to most healthy people like a not-very-interesting story (that PWC can no longer donate blood, yawn) has perhaps seemed to the media to be worth reporting because the ME Association have produced some interesting (and therefore more newsworthy) conflict. I was suprised to see the story reported at all, let alone in this depth. I think the MEA have done really well here. I hope this episode has laid the ground for further coverage of XMRV as research continues over the next few months.
I think that during the interview the penny actually dropped for the presenter. It's more obvious to me from listening to it rather than the transcript.
Like he sounded surprised that the MEA supported the ban. Maybe he thought we would be all up in arms and declaring it an infringement of our civil liberties and maybe a "how dare they insinuate that we might be infective"!
Like he sounded surprised that the MEA supported the ban. Maybe he thought we would be all up in arms and declaring it an infringement of our civil liberties and maybe a "how dare they insinuate that we might be infective"!