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XMRV: Why Biased Reporting Belongs on the Slush Pile

Posted Jan 21 2011 8:40pm 1 Comment
I'm not sure how my readers satisfy their need for news, but I do it mostly through trawling the internet and watching an hour or so of television in the evening. It must also be said that I gorge on Facebook and Twitter snippets for as long as my stomach will take it.

I am often led by my craving for science -- not because I am obsessed with finding a cure for my illness but because science is the timber of my tree; my lifeblood. I've been obsessed with it since I was a child. I think the word vivisection was part of my vocabulary before I could swear and I was far happier watching David Attenborough and Tomorrow's World than Trumpton or The Magic Roundabout.

I learned from an early age not to trust everything the newsman tells me, and yet even I have become increasingly disheartened of late. Notwithstanding the fact that I have recently been privy to some unsavoury hyperbole, I am still astounded by the way some scientific reporters work. Opinion counts, of course, but a good reporter should show both sides of the coin. If they don't how do we know if the other side has a tail on it, or if the 'head' actually exists? How do we know we're not being conned? Journalism works best when we can weigh up all sides of the debate. This is basic journalism, and yet increasingly, respected writers in mainstream newspapers are ignoring this first tenet.

If you think biased reporting is a problem then consider the lazy journalist. You know, the type? He rolls into the office still drunk or hung-over from the night before and has a deadline to meet. How can he meet his 3pm and still have a liquid lunch with Brian? Eureka! He can regurgitate this morning's press releases or 'report' on a news item already published elsewhere. All he need do is fiddle with the words a bit. He won't be reporting anything new but at least it's a news item. Is this a bad thing? It is if the press release is biased or has misrepresented the facts. It is if articles generated from this press release are sent with lightning speed around the globe. It is if scientific funding is lost due to the report. Thankfully, the vast majority of journalists are not so tardy.

And what of those diligent souls who have passion for their jobs? Perhaps they are fighting a losing battle. According to Andy Williams of Cardiff University, science news is "written by people at news organisations which are cutting staff, investing fewer resources into news production than ever before, and in most cases publishing or broadcasting for a dwindling audience."

"workload increases have been widespread and in many cases are becoming problematic. Whilst the number of journalists employed on the science beat has not risen in the last five years, reporters state that workloads have increased significantly...Most of these workload rises can be attributed to increasing cross-platform and multi-media journalism and the rise of internet news."

So, it seems that the added pressure of social media has forced even the good guys to sail close to the wind.  It may lead many to use the cheap resources available from organisations such as the Science Media Centre, which quickly provides news desks with 'appropriate' information and a list of scientists available to comment "whenever science hits the news".

Last February, Colin Macilwain wrote in Nature News "thanks to the massive growth in public relations and to online media's insatiable appetite for 'content', journalism in science, as in other spheres, has evolved into an ugly machine — called 'churnalism' by media-watcher Nick Davies and others. This machine delivers inexpensive and safe content, masquerading as news, to an increasingly underwhelmed public."

"The machine prospers because it serves the short-term interests of its participants. Editors get coherent and up-to-date copy. Writers get bylines. Researchers, universities and funding agencies get clips that show that their work has had 'impact'. And readers get snippets, such as how red or white wine makes you live longer or less long, to chat about at the water-cooler.
None of these groups is benefiting strategically from the arrangement. Science is being misrepresented as a cacophony of sometimes divergent but nonetheless definitive 'findings', each warmly accepted by colleagues, on the record, as deeply significant."

Macilwain reports that a survey conducted by Cardiff University identified "widespread misgivings about growing workloads associated with multimedia reporting, the rise of public relations, 'pack' journalism (in which reporters are obliged to cover a story because their competitors will) and the lack of time for original research on stories."

One can see that times are tough for the modern journalist, but this doesn't absolve him from writing with integrity, regardless of how time-pressured he is. Science journalists have a duty to judiciously report findings and refrain from sensationalism.  After all, we're not talking about the latest line of bikini waxes. This isn't entertainment for entertainment's sake. In many cases these are life and death stories.

ME/CFS is a much-besmirched condition that has suffered under years of obfuscation and misrepresentation. At a critical time such as this, it would behoove the media to pay close attention to all the facts. At the flick of a pencil they could write-off 17 million lives, however, with careful and thoughtful reporting they could keep the research fires burning, which in turn may afford sufferers the chance of a brighter and healthier future.

I'd like to conclude with a comment I made on the Guardian website after they reported on what is now known, within the ME/CFS community, as the 'XMRV contamination papers'.  This news item was an example of poor reporting, in that it showed clear bias and misrepresented the facts. Unfortunately, this report was not alone.


"Why is it that when hundreds of patients sent you the information pertaining to the hold-up of an important paper (written by the US Government and headed by the co-discoverer of Hep C), a paper that supported the findings that a retrovirus is strongly associated with the illness known as ME/CFS, you chose to ignore them?
  
You were complicit in withholding critical information from the public that up to 7% of the population are infected with this retrovirus. 

Despite your silence in reporting one of the most important findings in the past year to the British public, you now see fit to trumpet loud and clear across the nation that SCIENTISTS CONCLUDE MOUSE VIRUS DOES NOT CAUSE ME, despite the fact that none of the 5 papers have actually said this -- this is your own spin. You do not counter any of the interviews with a view from those who support the theory – which, after all, is basic journalism—instead you interview Professor Peto who has a clear vested interest, in that he is one of the leaders of the psychiatric-based PACE Trial which is due to publish its results any day now. This government-funded trial seeks to prove that adaptive pacing therapy, cognitive behaviour therapy and graded exercise therapy can quash the ‘illness beliefs’ of sufferers.

Unfortunately we do not have a free press in the UK but a government-owned and government-led press. New Labour set up what is known as the Science Media Centre when they were in power; this centre is meant to be a point of call for all journalists when science hits the news. Their aim is to ensure that when a major science story breaks, they can quickly provide news desks with the appropriate information and a list of scientists available to comment. At the centre of this is a team of experts who sit on the Science Advisory Panel. Each of these experts is responsible for a particular scientific area depending on their own expertise – or bias. Professor Simon Wessely, powerful proponent of the psychiatric paradigm, sits on the panel. Members associated with his school of thought do not believe there is a viral cause for ME/CFS. Simon Wessely is also involved in the government-led, PACE Trial and was co-author of one of the first studies to refute the initial findings on XMRV.  

Interestingly, the Government also employed Wessely to investigate the Camelford disaster. He declared that it was simply a case of mass hysteria. We now know that it was a disaster of the highest proportions and that the residents of Camelford had been poisoned by contaminated water from a Cornish reservoir. More than 20 tonnes of aluminium sulphate was accidentally emptied into the reservoir, tainting the water supply to 20,000 people." 

How many journalists reported the Camelford 'hysteria' findings as definitive?

XMRV Overview

In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

http://www.rescindinc.org/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

XMRV is similar to HIV, the retrovirus that causes AIDS.

Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

Key Scientific Papers and Related

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Science http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors http://www.pnas.org/content/early/2010/08/16/1006901107.abstract

Aug. 23, 2010 – Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors PNAS FDA Press Briefing http://www.wpinstitute.org/news/docs/FDAbriefing_082310.pdf

Blood Donor Bans

http://mcwpa.org/in-the-news/blood-donor-bans/

Pertinent News and Blog Reports

A Big Splash From an Upstart Medical Center - New York Times http://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight - Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

Viruses Found in Chronic Fatigue Syndrome Patients – National Institute of Health NIH Research Matters http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm

The Lingering Mystery of Chronic Fatigue Syndrome - New York Times blogs http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts  - New York Times http://www.nytimes.com/2011/01/04/health/04fatigue.html

XMRV and CFS – It’s not the end http://www.virology.ws/2010/12/22/xmrv-and-cfs-its-not-the-end/

Gearing Up for the Big Search for XMRV - Wall Street Journal http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

Other XMRV Links

Cleveland Clinic - 40% of patients with aggressive prostate cancer have XMRV http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.0020025

XMRV: Virological, immunological and clinical correlations in patients with chronic lymphocytic leukemia and mantle cell lymphoma http://www.wpinstitute.org/news/docs/Snyderman_XMRV.pdf

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract http://www.cdc.gov/eid/content/16/6/1000.htm

COMPOSITIONS AND METHODS RELATING TO XMRV-RELATED DISEASES AND CONDITIONS http://www.wipo.int/pctdb/en/wo.jsp?WO=2010132886&IA=US2010035144&DISPLAY=DESC

Of mice and men: on the origin of XMRV http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract

XMRV retrovirus found in 62% of ME patients tested in Lillestrøm, Norway
http://esme-eu.com/news/xmrv-retrovirus-found-in-62-of-me-patients-tested-in-lillestroem-norway-article440-7.html

THE PREVALENCE OF XMRV IN HEALTHY BLOOD DONORS IN JAPAN http://www.diagnosesupport.com/health/index.php?option=com_content&view=article&id=305%3Athe-prevalence-of-xenotropic-murine-leukemia-virus-related-virus-in&catid=132%3Axmrv-research&Itemid=8

1st International Workshop on XMRV: Abstracts in Reviews in Antiviral Therapy and Infectious Diseases 2010_8. Abstracts http://regist2.virology-education.com/abstractbook/2010_8.pdf

Distribution of xenotropic murine leukemia virus-related virus (XMRV) infection in chronic fatigue syndrome and prostate cancer Pubmed.gov http://www.ncbi.nlm.nih.gov/pubmed/20842203?dopt=Abstract

A Third Pathogenic and Lymphotropic Human Retrovirus  - AIDS Review
http://www.aidsreviews.com/files/2010_12_2_121-123.pdf

Visit http://mcwpa.org for more information on the ME/CFS story.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/note.php?note_id=160913563956987
Comments (1)
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Outstanding post that is filled with current and solid research and studies on ME/CFS and the newly discovered infectious third human retrovirus.

Ms. Pring has made many valid points about reporting and the use by many journalists and media outlets of just spitting out the Press Releases sent to them without any validation of the facts, analysis of the subject, or really any further work than just posting the Press Release and leaving it at that. This is NOT real journalism, it is a lazy, careless and dangerous form of journalism as the four faked studies in the online Retrovirology journal reveal. Those "studies" came out on the same day and were politically motivated to counter the very real, hard-core research of the positive studies on ME/CFS and the third human Retrovirus. Essentially, the "authors" of the study knew they did not have to do real research, no one would fact check, so they ginned up enough for a Press Release and then sent that Press Release out into the world so it could do its work - using fake research to damage the validity of very real research. The media picked up the PR and just threw it out there for the newspapers and Internet to pick up. This was NOT science but public releations and shear politics from the UK Wessely group.

The UK's Simon Wessely and the US CDC/CFS (William Reeves) were in cahoots together to ensure that ME/CFS sick were made to look lazy, crazy and even published a document on the very sick as having a "personality disorder" instead of very real medically validated issues.  The CDC Personaltiy Disorder paper was William Reeves last shot at attacking and demeaning the ME/CFS sick who he had damaged with CDC's assistance for nearly 30 years. Almost every mental illness term was thrown into that document. The Personality Disorder document was dismissed right off the bat by those in medicine and in the research fields for what it was: a last attack by a humiliated sociopath at very sick people.

The UKs Simon Wessely worked closely with William Reeves to ensure that the ME/CFS sick would remain in the eyes of the public as lazy and crazy and it did work quite well until 5,000 plus studies on ME/CFS from all fields were out in the pubic domain and then the final coup, the Whittemore-Peterson Institute's association between ME/CFS and a probably highly infectious and most likely deadly Retrovirus family. The WPI's study was further validated by the US FDA, NIH, NCI, Cleveland Clinic and Harvard. Pretty hard to refute studies by other more serious US Federal health organizations and that's when the CDC/CFS program and William Reeves took their fall. Reeves was removed from his post at the CDC/CFS and the CDC has been in hiding since then as they are well aware that the rest of the real researchers, physicians, policy makers, and public worldwide now know that there is indeed a deadly Retrovirus out there that is contagious and has been in the nation's blood supply for at least 30 years. And the CDC knew it and allowed this deadly third human Retrovirus to be out there without any research done on it.

Why did the CDC allow a Retrovirus to go unstudied when they were well aware that there had been another Retrovirus study by Drs. Defreitas, Bell and Cheney back in the mid 1980's? In the late 1980's the CDC "replicated" the Defreitas Retrovirus study and intentionally damaged the research coming up with two opposing results. So although the patent for this Retrovirus was issued (and searchable), the CDC made it a point to damage that Retrovirus research and then kill off any further research until it was picked back up again by Prostate Cancer researchers and then the Whittemore-Peterson Institute - 29 years later.

Many believe that the insurance companies were very much involved in damning ME/CFS and ensuring that the sick did not get any disability compensation. AIDS was moving through at the same time (HIV is the second human retrovirus) and those sick were costing the insurance companies huge amounts of money. So with prodding by the insurance companies, the CDC "concluded" that ME/CFS was to be surpressed, no real research done on it, and the very sick demeaned so that no one would believe they were in fact terribly sick. And oh, yes the ME/CFS sick do die from their disease. The sick die around 25 years earier than a normal life span and from heart disease, the cancers (leukemia/lymphomas are big) and suicide (not from depression but from living in one's own personal hell and being damaged and demeaned by their own family, friends, doctors, and the public). Wessely and Reeves did a great job in keeping the insurance companies safe from having to pay out claims on ME/CFS for more than two decades. They also had joined forces to ensure that this disease was seen as psychiatric in both countries so that those costs for real research and treatment would not amount to much more than a few psychologist's office visits and dangerous "treatments" that do indeed further damage the sick.

The history of ME/CFS and the UKs Simon Wessely and the USs William Reeves and other CDC players is sordid. For a great account of the last three decades of the damage done to the very sick AND a deadly Retrovirus read Hillary Johnson's OSLER'S WEB. See her site at .

Since the 6 December 2010 Washington Post advertisement that alerted the policy makers, researchers, physicians and public to this newly discovered Retrovirus things have started to change slowly in the US for ME/CFS sick. The situation in the UK remains deadly with many ME/CFS sick dying in psych wards IF they do not "admit" they are mentally ill. It is worse than the old Soviet Union was in dealing with their sick.

Those four fake studies and their powerful press release were very dangerous to the world's population. The studies were faked and no one bothered to look into them to see if the methods used were real. The media just pushed out the Press Release and let it do its damage. This type of lazy journalism can not be allowed to happen again, especially to research that is critical to every single person in the world. This Retrovirus may well be the cause of ME/CFS, other horrible diseases including prostate and breast cancer, autism, MS, and other neuro-immune-endocrine diseases. The Retrovirus may also be key to understanding how many cancers are able to exist. The CDCs damage of the Retrovirus in the late 1980s probably sent cancer research back a good 30 years. The CDC's unethical behavior also probably prevented major inroads into the serious diseases with many millions of people suffering terribly and then dying - and they may not have had to. Autism is another disease that shot up hugely from the 1980s onwards. What role did the Retrovirus found by Defreitas/Bell/Cheney play in Autism? We don't know because the CDC did not want anyone to know.

Do not allow shoddy, lazy journalism to continue damaging real research. Many millions of people worldwide suffer and die because of this type of lazy journalism and hyped Press Releases that go without fact checking or any sort of validation.

Big changes in lazy journalism need to be made. Big changes in the way that the world's governements have allowed outside influence like the insurance companies and big Pharma to play into real research must also take place.

Finally, it is time for Simon Wessely and company from the UK and the CDC/CFS William Reeves followers to step OUT of ME/CFS programs and let the real researchers do their jobs. No more psychobabble that has kept millions worldwide badly disabled and in bed. No more psychobabble that has brought the lifespan of the ME/CFS sick to average age of 54 due to heart disease, cancers and suicides. All of this must change now.

Thank you Ms. Pring for a very valuable and insighful article. Your points are on target and the links provided are extremely important for the public to go and read what has gone on and what is currently going on in this "underworld" by a very small group of people in the US and UK.

Sincerely - Sarah McGroarty

 

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