Is this just online please, or was it in the published paper? I didn't see it there.
UK Media coverage of NIH/FDA paper
- Thread starter Rrrr
- Start date
Is this just online please, or was it in the published paper? I didn't see it there.
BBC thread used to post XMRV messages
Just find another "thread hijack", this time on the BBC's "Ouch" disabilty pages, here.
I'm impressed by how people are finding these outlets! I saw another thread on Mumsnet a few days ago, which unfortunately had devolved into a bit of a punch-up about Lightning Therapy
but at least it was on there.
Just find another "thread hijack", this time on the BBC's "Ouch" disabilty pages, here.
I'm impressed by how people are finding these outlets! I saw another thread on Mumsnet a few days ago, which unfortunately had devolved into a bit of a punch-up about Lightning Therapy
but at least it was on there.pictureofhealth
XMRV - L'Agent du Jour
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Do you know what occurred to me today?
Who cares about the majority of the *UK media?!
I'm not sure we actually even need them to cover this (and if they are so into toe-ing the current unhelpful party line anyway and don't understand why giving space to a psychiatrist who suggests we are 'symptom focused, disgusting and neurotic' is unhelpful, and especially stinging to those families whose children with M.E. require tube feeding, turning over in bed or have died, their coverage won't be much use to us in any case, as we've discovered in the past. We will simply get lost in defensive replies and explaining ourselves and endless fact correcting.)
No, what is actually going to help us now, and is far far better, is that reputable scientists in high powered organisations (such as Alter, Lo, Goff, Coffin, Ruscetti, Silverman, Mikovits and others) take the research seriously and continue the investigations and encourage the big funding and contractors such as SAIC to get on board and proper clinical trials get underway. This is what is now happening and will happen more and more as evidence builds. This is surely the intelligent power base we need, not the capricious and malicious witterings of gossiping spin mongers.
Who cares what the UK press thinks? They only report on the discoveries after the event anyway. The media doesn't sway the minds of scientists and doctors and medical researchers once the medical evidence starts to build up (as it is now doing) and who are the only professionals we really need behind us. In truth we only attempted to draft in the hacks to illustrate the chilling lack of rigorous science, fairness and due process which is what the general trend of ME research in this country had become in recent decades. If they had done a reasonably good investigative job in the first instance, we would never have needed to ask. In the end, they have failed us and our children miserably.
No we are in better hands now. The MRC aren't reading the broadsheets to see if they should be funding a particular line of research. They will fund more when they hear great science from the mouths of experienced researchers whose opinion they value (eg. encouraging news and further studies from the FDA/NIH, positive reports from the US XMRV Conference eg hopefully WPI positive UK study and beneficial outcomes from clinical trials that may soon get underway etc). They will be reading the science papers and the commentaries in the medical journals - they are not going to be interested in the opinions of a simple newspaper (which are really only for the public in any case). The professionals have their own behind the scenes networks and channels of communication anyway and only truly value the good opinion of their own colleagues and the medical press.
If the UK media had truly cared to highlight the lack of biomedical research in the UK, the diabolical politics and the tragic deaths which could have been avoided - they have had many opportunities to have done so over the past 25 years - and in fairness one or two have - but it was not nearly enough for nearly long enough. In any case what is the value of a media outlet that will publish science articles along the lines of 'Are Aliens In Fact Thinking Machines?" in a week where an infectious retrovirus proven to be in the general population and suspected to have infected the blood supply putting millions of real lives at risk, goes unreported?
No, once the XMRV scientific ball really starts rolling, as it now looks as if it may have done, once further serious studies get underway (which they now have), once the clinical trials start up (these conversations have already begun) and as the paradigm finally starts to shift ... and the UK press finally start reporting the news we all wanted to hear decades ago, in a sober and genuinely compassionate manner - it will be old, second-hand news and we will all have long since left the building.
The public only need to know the facts about the cause and truth about ME to the extent that anyone of us who already have the illness might need to know it - ie. does my GP know what this is (yes they will), what will the treatment be (GP & XMRV Consultant will have answer), where can I get it (GP & XMRV Consultant will have answer) and what are my chances of leading a full and happy life afterwards (GP & XMRV Consultant).
The UK press will be (& are) irrelevant. And I hope you're reading (though it doesn't really matter if you are) ...
* ps - All those UK outlets who have posted at least a vague and helpful nod of journalistic coverage, in the past week, in the direction of fact based science in ME/CFS, are of course excluded from the above diatribe!
The US media, the Iranian media and the rest of Europe and the world's media and all the blog writers who have been so truly magnificent with their accurate coverage this week and of course Susan's UK documentary production team who have already collated a stunning collection of interviews and comment, are of course also totally exempt.
Ok, rant over.
Or maybe not - I feel a blog coming on ...
Who cares about the majority of the *UK media?!
I'm not sure we actually even need them to cover this (and if they are so into toe-ing the current unhelpful party line anyway and don't understand why giving space to a psychiatrist who suggests we are 'symptom focused, disgusting and neurotic' is unhelpful, and especially stinging to those families whose children with M.E. require tube feeding, turning over in bed or have died, their coverage won't be much use to us in any case, as we've discovered in the past. We will simply get lost in defensive replies and explaining ourselves and endless fact correcting.)
No, what is actually going to help us now, and is far far better, is that reputable scientists in high powered organisations (such as Alter, Lo, Goff, Coffin, Ruscetti, Silverman, Mikovits and others) take the research seriously and continue the investigations and encourage the big funding and contractors such as SAIC to get on board and proper clinical trials get underway. This is what is now happening and will happen more and more as evidence builds. This is surely the intelligent power base we need, not the capricious and malicious witterings of gossiping spin mongers.
Who cares what the UK press thinks? They only report on the discoveries after the event anyway. The media doesn't sway the minds of scientists and doctors and medical researchers once the medical evidence starts to build up (as it is now doing) and who are the only professionals we really need behind us. In truth we only attempted to draft in the hacks to illustrate the chilling lack of rigorous science, fairness and due process which is what the general trend of ME research in this country had become in recent decades. If they had done a reasonably good investigative job in the first instance, we would never have needed to ask. In the end, they have failed us and our children miserably.
No we are in better hands now. The MRC aren't reading the broadsheets to see if they should be funding a particular line of research. They will fund more when they hear great science from the mouths of experienced researchers whose opinion they value (eg. encouraging news and further studies from the FDA/NIH, positive reports from the US XMRV Conference eg hopefully WPI positive UK study and beneficial outcomes from clinical trials that may soon get underway etc). They will be reading the science papers and the commentaries in the medical journals - they are not going to be interested in the opinions of a simple newspaper (which are really only for the public in any case). The professionals have their own behind the scenes networks and channels of communication anyway and only truly value the good opinion of their own colleagues and the medical press.
If the UK media had truly cared to highlight the lack of biomedical research in the UK, the diabolical politics and the tragic deaths which could have been avoided - they have had many opportunities to have done so over the past 25 years - and in fairness one or two have - but it was not nearly enough for nearly long enough. In any case what is the value of a media outlet that will publish science articles along the lines of 'Are Aliens In Fact Thinking Machines?" in a week where an infectious retrovirus proven to be in the general population and suspected to have infected the blood supply putting millions of real lives at risk, goes unreported?
No, once the XMRV scientific ball really starts rolling, as it now looks as if it may have done, once further serious studies get underway (which they now have), once the clinical trials start up (these conversations have already begun) and as the paradigm finally starts to shift ... and the UK press finally start reporting the news we all wanted to hear decades ago, in a sober and genuinely compassionate manner - it will be old, second-hand news and we will all have long since left the building.
The public only need to know the facts about the cause and truth about ME to the extent that anyone of us who already have the illness might need to know it - ie. does my GP know what this is (yes they will), what will the treatment be (GP & XMRV Consultant will have answer), where can I get it (GP & XMRV Consultant will have answer) and what are my chances of leading a full and happy life afterwards (GP & XMRV Consultant).
The UK press will be (& are) irrelevant. And I hope you're reading (though it doesn't really matter if you are) ...
* ps - All those UK outlets who have posted at least a vague and helpful nod of journalistic coverage, in the past week, in the direction of fact based science in ME/CFS, are of course excluded from the above diatribe!
The US media, the Iranian media and the rest of Europe and the world's media and all the blog writers who have been so truly magnificent with their accurate coverage this week and of course Susan's UK documentary production team who have already collated a stunning collection of interviews and comment, are of course also totally exempt.
Ok, rant over.
Or maybe not - I feel a blog coming on ...
I hate my country with a passion and plan on moving somewhere else for a new life once there is treatment for ME.
Looking back over nearly 3 decades at an avoidable infectious disease for me and millions of others, that was allowed to be ignored through psychological theories coming out of the UK, makes me physically sick.
To think this tiny little island managed to hypnotise the rest of the world and sell their theories abroad, especially to America it's almost laughable the UK pulled it off but they did. After Strauss died at the CDC, Reeves managed to import the hatred of the disabled (ME patients) and make them part of the CDC's policies on 'CFS'. All the time praising the wonderful British psych's as 'experts'.
One saving grace, is all this was planned. We never knew and were meant to find out had it not been for the WPI and the discoverer of XMRV in prostate cancer. Maybe that will be a way to cope in the future, however the sadness perfuses to the core and touches our families as well as ourselves.
Starting a new life after ME, with a new identity will be a must in order to keep sane and not sink into depression.
2015: Cue the 50 yr old ME patients going on their first date............who were once kids with ME. All that time stolen, due to the MEDIA and control of the MEDIA by the state.
Looking back over nearly 3 decades at an avoidable infectious disease for me and millions of others, that was allowed to be ignored through psychological theories coming out of the UK, makes me physically sick.
To think this tiny little island managed to hypnotise the rest of the world and sell their theories abroad, especially to America it's almost laughable the UK pulled it off but they did. After Strauss died at the CDC, Reeves managed to import the hatred of the disabled (ME patients) and make them part of the CDC's policies on 'CFS'. All the time praising the wonderful British psych's as 'experts'.
One saving grace, is all this was planned. We never knew and were meant to find out had it not been for the WPI and the discoverer of XMRV in prostate cancer. Maybe that will be a way to cope in the future, however the sadness perfuses to the core and touches our families as well as ourselves.
Starting a new life after ME, with a new identity will be a must in order to keep sane and not sink into depression.
2015: Cue the 50 yr old ME patients going on their first date............who were once kids with ME. All that time stolen, due to the MEDIA and control of the MEDIA by the state.
meadowlark
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@TomStone: I just want to tell you that your letter to the Guardian was powerful, and it opened the gate for others to chime in. You forced a wall to crumble, in one place, at a very important moment. It affected me powerfully.
I share your frustration about not being able to write letters that detail the science, for fear I will get it wrong. I grasp the principles at work, but as a middling science student, I am haunted by possibly getting it a bit wrong, thus opening the validity of the XMRV/MLV association to criticism from people who are invested in disbelief. In addition, I am stupid enough to let my confidence be undermined by the erudite level of scientific analysis on most Phoenix Rising forums.
But I think your letter was one of the most important I've ever read, as it was beautifully argued, and a brilliant bit of subversion. I wept with relief when I read it, and sent the link to many friends.
I'm really grateful.
I share your frustration about not being able to write letters that detail the science, for fear I will get it wrong. I grasp the principles at work, but as a middling science student, I am haunted by possibly getting it a bit wrong, thus opening the validity of the XMRV/MLV association to criticism from people who are invested in disbelief. In addition, I am stupid enough to let my confidence be undermined by the erudite level of scientific analysis on most Phoenix Rising forums.
But I think your letter was one of the most important I've ever read, as it was beautifully argued, and a brilliant bit of subversion. I wept with relief when I read it, and sent the link to many friends.
I'm really grateful.
No need to thank me Meadowlark. If it wasn't me it would have been someone else i think but thank you for your kind words. It's not very often that we get to feel useful and you have made me feel useful. Thank you.
I don't know if the M.E makes trying to understand the science harder or if it'd just because i did physics and no one asks me about how fast things move or whatever.
With that lack of sscientific knowledge i try then to keep abreast of the politics and the history of the disease. I use that as a way of getting people interested in the science then i send them off to find out about the science of the thing themselves. Like yourself idon't wan't to damage the credibility of the scientific evidence with poorly understood and poorly referenced attempts at playing science teacher. Far better those that can explain the science do and far better that people like us try to do our bit by spreading the word regarding poor treatment by the politico-medical complex.
*GG*
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Reminds me of some other corruption that might have come out of your country by Elites!
Hi TomStones I'm slowing learning about media suppression here in the UK and especially the Science media centre
that may have some part to do with the lack of positive press regarding our plight.
I have heard mentioned on various posts A or D notices censoring press reports.
Are you able to explain what a D notice is or know any links.
If you can help , many thanks in advance
that may have some part to do with the lack of positive press regarding our plight.
I have heard mentioned on various posts A or D notices censoring press reports.
Are you able to explain what a D notice is or know any links.
If you can help , many thanks in advance
In my young day, there wasn't a Science Media Centre - rather, each speciality's professional body would be where journalists would go for a rent-a-quote. For example, if there was a story on psychology, they'd contact the British Psychological Society and would be given the name and phone number of the relevant specialist.
If journalists are now going to a single source for science stories, and Prof Wessley is given out as the CFS expert, then he's got a monopoly on the media. However, if there's a specialist body for, say, virology or retrovirology and they would do a press release on their reaction to the latest XMRV/MLV news, that could help. I think. But I'm out of date on how this all goes on.
Are there any UK journos on this board who know how this stuff works?
If journalists are now going to a single source for science stories, and Prof Wessley is given out as the CFS expert, then he's got a monopoly on the media. However, if there's a specialist body for, say, virology or retrovirology and they would do a press release on their reaction to the latest XMRV/MLV news, that could help. I think. But I'm out of date on how this all goes on.
Are there any UK journos on this board who know how this stuff works?
pictureofhealth
XMRV - L'Agent du Jour
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Hi Meadowlark and Tom S -
I agree as I read this letter soon after it was posted. It was very well written and v calm & to the point.
Unfortunately, it has now been removed by a moderator at the Guardian - check it out.
I'm afraid I didn't see Tom's letter - where had it been posted? Was it on the original STD thread?
pictureofhealth
XMRV - L'Agent du Jour
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Hi Sasha - there appear to be about 3 different threads running on the (lack of) UK press coverage on the forum at the moment! I cannot now find the link to the relevant article, which I accessed this morning and where a comment by TomStone has been deleted by a Guardian moderator. Tom may be the best person to find it, but I'm pretty sure its on a different UK media thread to this one.
Thanks, picture! I'll look at the other threads.
You're right, a single thread doesn't seem to have been sufficient to contain our mass angst!
pictureofhealth
XMRV - L'Agent du Jour
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Hi Sasha, sorry it was this thread, but just further back than I'd realised!
See post #55 (a few pages back).
This is the link to the Guardian article posted there, but the article topic has now changed since the date Tom's message was first posted (originally it was STD's).
http://www.guardian.co.uk/commentisfree/cartoon/2010/aug/27/cartoon-bluelou-cameron-daughter-nadir
I'm pretty sure they delete messages that do not seem relevant to the topic under discussion. Perhaps Tom kept a copy of his post?
See post #55 (a few pages back).
This is the link to the Guardian article posted there, but the article topic has now changed since the date Tom's message was first posted (originally it was STD's).
http://www.guardian.co.uk/commentisfree/cartoon/2010/aug/27/cartoon-bluelou-cameron-daughter-nadir
I'm pretty sure they delete messages that do not seem relevant to the topic under discussion. Perhaps Tom kept a copy of his post?
Hi pictureofhealth, my post on the thread you mention was just a copy and past of a post in another thread. It's just a version of my post from http://www.guardian.co.uk/news/datablog/2010/aug/25/stds-england-region-gender-ethnicity-statistics with a better explanatory introduction. I don't have a copy of it though in the form that the Guardian deleted for being off topic.