UK Media coverage of NIH/FDA paper
http://www.dailymail.co.uk/health/a...igue-syndrome-caused-mouse-related-virus.html
http://www.dailymail.co.uk/health/a...igue-syndrome-caused-mouse-related-virus.html
UK Media coverage of NIH/FDA paper
- Thread starter Rrrr
- Start date
Thanks, Rrrr - just posted this on the other thread:
I've posted a comment (you have to register, but that's quick). At the moment they have zero comments published but they are pre-moderating.
I praised them for covering the story and pointed out that it's a huge story because it's a retrovirus and probably in the UK blood supply (both aspects not mentioned in their coverage). I called for UK govt funding and protection of the blood supply, and pointed out that the expert commentary on the PNAS paper (in the journal itself) called for immediate "proof of principle" clinical trials of ARV for ME/CFS.
Let's comment and push them to see the real scope of the story beyond what was in the press release! I recommend that we PRAISE THEM for their coverage (we want them to do it again!) and tell them what a big story it is, and why. I also recommend keeping the messages short so that people will read them.
I've posted a comment (you have to register, but that's quick). At the moment they have zero comments published but they are pre-moderating.
I praised them for covering the story and pointed out that it's a huge story because it's a retrovirus and probably in the UK blood supply (both aspects not mentioned in their coverage). I called for UK govt funding and protection of the blood supply, and pointed out that the expert commentary on the PNAS paper (in the journal itself) called for immediate "proof of principle" clinical trials of ARV for ME/CFS.
Let's comment and push them to see the real scope of the story beyond what was in the press release! I recommend that we PRAISE THEM for their coverage (we want them to do it again!) and tell them what a big story it is, and why. I also recommend keeping the messages short so that people will read them.
still no comments on dialy mails article - seems a bit unlikely given I know of at least 2 being made
I think that both BB and I posted comments that said, "it's a retrovirus! And it's in the UK blood supply!" so maybe that was a bit too much news for them, who knows... or perhaps they don't consider it a priority story and just haven't got round to releasing the comments... or maybe they think our comments are so stunningly insightful that they want to keep them under wraps and have a huge article about it tomorrow pretending they noticed all that by themselves... or they're on holiday...
The Daily Mail comments system is just a bit odd. Don't take it personally.
Looks like this might be the only UK coverage.
It's for our own good. If the media were to inform us of this news, it could make us all hysterical with worry, and give us too excellent an excuse for avoiding the terrible stress and responsibility of being healthy. How very sensetive of them. How very brave.
Looks like this might be the only UK coverage.
It's for our own good. If the media were to inform us of this news, it could make us all hysterical with worry, and give us too excellent an excuse for avoiding the terrible stress and responsibility of being healthy. How very sensetive of them. How very brave.
I commented too -same stuff about retrovirus & blood supply- but still nothing !
i suppose I shouldnt expect more - after all it's a well known fact that people with ME are mad so being allowed to comment on a story which might suggest we're not would clearly simply re-enforce our false illness beliefs (ie that we're not mad at all) and it's only right that whilst racist and bigotted members of the public shoudl be allowed to spew their views on everything under the sun, us mad people shouldn't - as it might upset their readership - who i refered to earlier
I now know of 5 people who've commented - we cant all of posted insane or offensive comments so where are they - if this keeps up I may have to alter my even handed approach to newspapers (which is I dont buy any equally and fairly) and start buying whatever is the mails main rival
I now know of 5 people who've commented - we cant all of posted insane or offensive comments so where are they - if this keeps up I may have to alter my even handed approach to newspapers (which is I dont buy any equally and fairly) and start buying whatever is the mails main rival
7hrs isnt enough time to even approve one? because it's been longer than that since I commented and at least 1 other commented before me - on other stories the wait is usualy less than an hour - i know someone who comments on mail articles a lot and I asked how long it normally takes before makign the above post
bad? no - but it wasnt particularly good either
bad? no - but it wasnt particularly good either
I commented to the Daily Mail twice! I thought I had done something wrong when my comment didn't appear so I wrote another short message. That was 8 hours ago? Is nobody in the media in the UK interested or is the whole thing going to be ignored and hope we go away and do more exercise!!
You can write them a letter:
letters@dailymail.co.uk
be kind to them, they seem to be the only newspaper prepared to report on this.
letters@dailymail.co.uk
be kind to them, they seem to be the only newspaper prepared to report on this.
I agree that we should take good care to be courteous and respectful to those papers who cover the story (particularly those that do so sympathetically, like the Mail). We can't afford to blow any media support or do anything to dissuade them from continuing to cover the story. Let's not take our frustration out on the very papers who have actually covered it.
It's possible that they're working up something bigger - possibly the comments have alerted them to the bigger picture and they are investigating.
The press release was very low key and I think that was the US govt trying not to scare people; but in the UK, where we're so desperate to get proper research and treatment underway, there's a real tension between this goal and that of preventing panic.
I'm hoping that tomorrow will be a new day (Rhett!) as far as the UK media are concerned.
It's possible that they're working up something bigger - possibly the comments have alerted them to the bigger picture and they are investigating.
The press release was very low key and I think that was the US govt trying not to scare people; but in the UK, where we're so desperate to get proper research and treatment underway, there's a real tension between this goal and that of preventing panic.
I'm hoping that tomorrow will be a new day (Rhett!) as far as the UK media are concerned.
Yes I will be kind to them but it's all so frustrating and indeed frightening that something as big as xmrv has never been mentioned on any of our tv channels here. I suppose I feel this way because I am following the story from USA so closely and because I, and so many others here in UK are so sick and want the whole world to know we may finally have proof of just how sick we really are. It certainly does feel even more like an invisable illness tonight.
ME Association comment on PNAS paper and UK coverage
ME Association (UK)
I emailed Dr Shepherd today (Tuesday) about the recently published Alter/Lo PNAS paper and about the disappointing lack of UK media response.
Re: The Alter/Lo paper - Dr Shepherd confirmed that he is working flat out to complete the MEAs statement (in consultation with UK medical colleagues). Its all in progress.
However, unfortunately they are currently unable to add or make any changes to their website as their technician is on holiday.
He kindly agreed therefore that we could repost the full statement here (on Phoenix Rising) once approved by the MEA trustees probably late Wednesday.
Re: The UK Media - He also attached the following explanation as to why he thinks there has been so little coverage to date in the UK press.
"MEDIA REACTION
In America, the paper has been quite widely reported with most of the coverage being supportive. In the UK there has been very little interest - apart from the Daily Mail, which carried an on-line story.
Lack of coverage in the UK is partly because selected health journalists, who might have reported the story, like to have access to a new research paper well before the information enters the public domain - so they have a day or two to chase around and obtain informed comment on the story. Health reporters have finished writing their copy for the next days paper well before 8pm in the evening - so unless there is a real breakthough news item they are not at their desks in the evening. The US press conference at 8pm UK time did not fit in with their working arrangements for printing something on Tuesday and the findings would be 'old news' by Wednesday. In addition, they also had a good headline health story for Tuesday morning relating to people being refused an anti-cancer drug due to a NICE ruling."
ME Association (UK)
I emailed Dr Shepherd today (Tuesday) about the recently published Alter/Lo PNAS paper and about the disappointing lack of UK media response.
Re: The Alter/Lo paper - Dr Shepherd confirmed that he is working flat out to complete the MEAs statement (in consultation with UK medical colleagues). Its all in progress.
However, unfortunately they are currently unable to add or make any changes to their website as their technician is on holiday.
He kindly agreed therefore that we could repost the full statement here (on Phoenix Rising) once approved by the MEA trustees probably late Wednesday.
Re: The UK Media - He also attached the following explanation as to why he thinks there has been so little coverage to date in the UK press.
"MEDIA REACTION
In America, the paper has been quite widely reported with most of the coverage being supportive. In the UK there has been very little interest - apart from the Daily Mail, which carried an on-line story.
Lack of coverage in the UK is partly because selected health journalists, who might have reported the story, like to have access to a new research paper well before the information enters the public domain - so they have a day or two to chase around and obtain informed comment on the story. Health reporters have finished writing their copy for the next days paper well before 8pm in the evening - so unless there is a real breakthough news item they are not at their desks in the evening. The US press conference at 8pm UK time did not fit in with their working arrangements for printing something on Tuesday and the findings would be 'old news' by Wednesday. In addition, they also had a good headline health story for Tuesday morning relating to people being refused an anti-cancer drug due to a NICE ruling."
Hopefully he'll be 'toast' after the September conference and the announcement of XMRV positive patients in UK/Europe which is rumoured to be on the way ...
Happy to say that 22 comments on the Daily Mail article are now up, including mine. They have a "best rated" section where they show the five that have got the most votes so far and mine is currently rated second.
I think it's important to keep CFS-positive messages rated high so we keep the trolls down. If you like the message I posted there (I am on there as "Alexandra, London"), please click on the green "up" arrow to bump me. My message raises the important points that we're talking about a retrovirus, that it's likely in the UK blood supply, that ME/CFS is a serious disease and the govt needs to act with more research, protection of the blood supply and "proof of principle" clinical trials.
Here's my message:
And here's the link to the page (click on the "best rated" tab to see it).
I think it's important to keep CFS-positive messages rated high so we keep the trolls down. If you like the message I posted there (I am on there as "Alexandra, London"), please click on the green "up" arrow to bump me. My message raises the important points that we're talking about a retrovirus, that it's likely in the UK blood supply, that ME/CFS is a serious disease and the govt needs to act with more research, protection of the blood supply and "proof of principle" clinical trials.
Here's my message:
Thank you for covering this important story (ahead of the other UK media!).
The study has very important implications. The virus in question is a retrovirus (as is HIV, which causes AIDS) and is very likely to be in the UK blood supply already. 7% of the healthy control group in the study - all blood donors in the US - had the virus.
The UK government should be taking this extremely seriously. It should be starting up its own MLV research programme and acting swiftly to protect the safety of the UK blood supply.
ME/CFS is a serious and often severely disabling disease. Everything possible should be done to help those who have it and protect those who don't from getting it.
An expert commentary on Dr Alter's study in the same journal called for "proof of principle" clinical trials of anti-retrovirals for people with ME/CFS to be started immediately.
This is a huge story and I look forward to the Daily Mail's continued coverage.
The study has very important implications. The virus in question is a retrovirus (as is HIV, which causes AIDS) and is very likely to be in the UK blood supply already. 7% of the healthy control group in the study - all blood donors in the US - had the virus.
The UK government should be taking this extremely seriously. It should be starting up its own MLV research programme and acting swiftly to protect the safety of the UK blood supply.
ME/CFS is a serious and often severely disabling disease. Everything possible should be done to help those who have it and protect those who don't from getting it.
An expert commentary on Dr Alter's study in the same journal called for "proof of principle" clinical trials of anti-retrovirals for people with ME/CFS to be started immediately.
This is a huge story and I look forward to the Daily Mail's continued coverage.
And here's the link to the page (click on the "best rated" tab to see it).