The UK BBC report *Half the story!*

VillageLife

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Ok, finally the bbc is reporting some information about ME/CFS....but its not mentioning XMRV, MLVs, retroviruses or any named virus, they are simply saying a Virus!

On the day of the 1st XMRV conference in USA, a study has been reported on the BBC about a ME/CFS 'virus link' found in children!
They are reporting that, Scientists in Scotland have found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus.
Blood tests conducted on children with the illness found abnormalities in their white blood cells which is seen as an indication of a viral infection.


This has made it onto the TV, BBC Breakfast news/ BBC news 24.

BBC website
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884

BBC Radio
http://news.bbc.co.uk/today/hi/today/newsid_8975000/8975412.stm?forumid=331851

BBC Short clip
http://www.bbc.co.uk/news/health-11209605?forumid=331851


Ironically immune abnormalities are also to be discussed at the imminent XMRV conference, Will these immune abnormalities give evidence that a retrovirus is causing ME/CFS?

It does seem the BBC are only reporting *half* the story. (It seems weird!)

I am pleased to see them report on ME/CFS however I would like them to report all the *facts* on ME/CFS....and that means mention XMRV and the ground breaking research on retroviruses!
We are still waiting for the BBC to follow the Alter study, maybe they never will now.


The conference starts in the USA later on today...........
Tomorrow a study will be presented to the Conference by Dr. Judy Mikovits - on infectious XMRV in the blood of UK, CFS patients.
 

VillageLife

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Yes Im pleased to see this on tv, but i am concerned they aren't reporting the whole story.

A friend of mine just rang to say she saw ME on the news but says how come they dont mention the name of the virus and how come its only been found in children?
They aren't explaining this very clearly!
 

Trooper

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After the eerie silence on the NIH paper I will take even quarter of a story on ME/CFS. No, they aren't explaining it that well but at least it's in the right direction I suppose :) It's odd that they mobilized on this but not the NIH paper - I suspect that the general dumbing down of the news in the past decade is a factor in this.
 

Esther12

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When you said 'Only half the story' I thought they were going to mark the start of the XMRV conference with a series of stories on evidence that CFS is a primarily psychological condition!

Strange they'd write about this work but not the Alter study. Very odd to have no mention of MRVs in the story - maybe they were just rehashing a press release about this particular piece of research? But it looks like they did more than that.
 

Mark

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Considerably Less Than Half The Story

How pathetic. Preparing the population gradually...I feel so ashamed.

And we still get "chronic fatigue" casually chucked in there, and "at first doctors thought it was all in the mind" - really? Is that "at first" back in 1955, when reports concluded it could not be, or "at first" back in the 1980s when the shrinks took over in earnest? Perhaps they're referring to Wessely: "I will argue that ME is simply a belief, the belief that one has an illness called ME".

Perhaps his argument influenced those doctors?

"I haven't been treated very nicely."

You ain't kidding Jozef. :(
 

Trooper

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At 6pm on the front page of the BBC News website, this story is currently the 3rd most shared - A lot of people will be seeing this

ME/CFS 'virus link' found in children

http://www.bbc.co.uk/news/

Today I had someone who yesterday had the typical and frustrating viewpoint of ME/CFS, ask me if I had seen this and wasn't it interesting and big news that they think a virus a causes it? I said yes, it's really not the whole story and it was always going to be something like this.

Anyway, if even a few hundred or thousand people change their perceptions of this illness (or even question theirs) then that can only be good.

The cynic in me (like Mark ^ and others have already said) says this was the real reason for todays coverage.
 

Sasha

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Great quote under the video of that boy: "Sometimes you just want to punch someone"!
 

julius

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Funny they finally report a virus, but the study wasn't even looking at viruses.

However, this study will actually be a step in showing (or at least supporting) causation. Will it not? They are suggesting a correlation between the virus and these symptoms.
 

Mark

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Today I had someone who yesterday had the typical and frustrating viewpoint of ME/CFS, ask me if I had seen this and wasn't it interesting and big news that they think a virus a causes it? I said yes, it's really not the whole story and it was always going to be something like this.
I would say I told you about this 10 months ago and they still aren't reporting barely half the story.
 

Mark

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Funny they finally report a virus, but the study wasn't even looking at viruses.
Good point Julius, on this occasion they are interpreting the results - in light of all the other news which they aren't reporting. Normally this sort of extrapolation is frowned upon - but only when done by people like the WPI, of course.

No comments section on the BBC article. :-(
 

bertiedog

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I emailed BBC Breakfast show this morning telling them about the XMRV Conference and that Dr Judy would be presenting information about XMRV and a UK study which I took part in. I also mentioned that we are banned from giving blood as from November and it would be great if they would do a follow up. Needless to say I haven't heard anything.
Pam
 

FancyMyBlood

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Great news and interesting study! Can anybody link me to the full text?

Now let's hope this will be the stepping stone for the BBC to cover more new ME/CFS science. Starting with tomorrow's positive XMRV study by Dr. Mikovits et al.
 

thegodofpleasure

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Staking a claim for the Empire

After blatantly ignoring the recent developments across the Atlantic (in the colonies don't you know,what !) , it does seem that the jingoisticly blinkered BBC are presenting an inadequate and misleading version of the viral association story here.
Perhaps we'll yet be able to claim this discovey in the name of the British Empire ! ;)

Chin Chin. :D

TGOP :worried::Retro redface: (embarrassed British Citizen)
 

thegodofpleasure

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Athene

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I think journalists as a species are stupid and lazy, and they only report news stories that are handed to them ready made.
They probably got a good press release on the Scottish children's study, so they regurgitated it on air.
They will report the MULV/XMRV discoveries made by Alter et al when an international news conference is held, which dishes out all the information to them on a plate.
 

Mark

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The problem I see though, Athene, is whether there is ever going to be such a bit announcement. Everything is being managed in gradual drip-drip news form; there may never be a big "shock horror retrovirus found in population" moment for the papers to hang a story on.

It worries me that the news is never going to reach the public and will just get handled behind closed doors - because that means there's never any pressure for people to do their jobs and we patients and advocates have to keep trying to do it all for them; also means there's no democracy in the process, and no pressure to investigate the very serious historical concerns. I didn't really expect much - this isn't a "democracy" or a "free country" in any meaningful sense any more - but the way this news is being managed is all far worse than even I had feared.

If the discovery of a new infectious retrovirus, associated with a disease previously considered psychological, in the global human population at 3-7%, is not significant news, and if then the confirmation of all that by US health authorities is not news at all, then what WILL ever be news?
 

Mark

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On a slightly different track: The Patient Advocate has written a great piece and a highly distinctive argument saying (amongst other strong and interesting arguments) that the Scottish study is actually hugely important, even though of course we've rubbished it on this thread in comparison to XMRV.

To me I realise that that's true actually, because it's
(a) a separate line of scientific investigation
(b) confirmation of biomedical association accepted as science in the UK

Also I haven't checked out the details because I've been focused on the XMRV conference of course, but if the numbers are high in this association and if the cohort is not just of the very sick, maybe it does actually show more than the XMRV work proves in terms of the proportion of UK CFS patients with viral cause.

So it's actually a very big development from our POV in the UK and maybe in our disgust about the XMRV situation we may have missed that point somewhat. It really ought to open up future research in the UK to at last start researching the biomedical cause, which to me has always been the linchpin of the argument here: that the authorities have never even tried to research ME/CFS (since the 1980s, at least) other than researching the spurious psych theories..