Thursday, 9 February 2012

An outsiders view

It is often interesting to view things from a perspective we can't possibly have ourselves. I came across this article by accident today. At first I didn't really want to read it, as I suspected it would bring up feelings of resentment again towards Dr Wessley and his interviews last year. I think this may actually be referring to a more recent set of interviews that I am not familiar with. 

It's written by an American. In America they seem to not have the political turmoil surrounding M.E. that we do here. It seems that we have our psychological study field fighting to protect an illness they wish to remain being classified as psychological. It is an interesting article, that makes for interesting reading. I've copied it below, but you can read the original by clicking the title of my blog post. 

This first quote though is actually taken from one of the comments following the article.

"Tip for journalists: if someone's waving their hands about in your face and yelling their heads off for attention, look behind them. What are they trying to distract you from?"

"When Journalism Becomes Sensationalism

"I often observe British tabloids with a sense of bemusement, but have held the BBC in high esteem. I do however, question the way in which the BBC reported a recent piece titled "Torrent of abuse' hindering ME research." by journalist Tom Feilden. Mr. Feilden interviewed a British professor of psychological medicine, and his retrovirologist co-author on a scientific paper, who complained about the abuse they have received from patients with myalgic encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS).

"No patients were interviewed (neither those that made threats or any of the hundreds of thousands who have not) nor were any of the hundreds of the researchers who have never been abused in the story. Instead Mr. Feilden interviewed a physician who is a scientific officer with a patient group who pointed out that the abuse and threats were coming from a very tiny minority of patients and suggested that a lack of research funds was the more likely reason fewer researchers were in the field. Balance? Possibly. Funding issues instead of death threats? Boooring.

"In the BBC story one virology professor who had collaborated with the professor who is a lightening rod in the field said she would never do research on ME/CFS again. And yet, a virology professor who runs a highly popular and acclaimed research blog in the United States, joined the scientific board of a large advocacy group as a result of his experiences. People's decisions are often as individual as they are. The question may be how tricky is it to make a "trend" out of the decisions of a few?

"During the original BBC interview the psychiatry professor read aloud from letters he had received containing a considerable number of swear words. While it is good that the BBC verified the threats to the professor did they verify the veracity of patient complaints against him? I think it is far easier to dismiss patient claims as "conspiracy theories" rather than investigate them. In part because while there is often a grain of truth there in my experience, the documented cognitive abnormalities that are part of this neuroimmune disease (patients call it brainfog) often create misunderstandings.

"The headlines went viral worldwide almost immediately. Columnist Rod Liddle of The Sunday Times produced a piece in which he mixed up the facts, left out easily verified facts and generally muddled the situation further. Headline after headline blared forth that researchers were threatened and as a result many researchers were staying out of the field. They certainly grabbed attention, but did they inform? Death threats, no matter how isolated, are a much sexier story than one in which the vast majority of researchers do not receive so much as a birthday card much less death threats from patients too ill to carry them out. The same scientists who do persevere in a field in which biomedical funding is demonstrably scarce.

"In the United States if you wish to know the amount of public funding a disease or field receives it will take less than five minutes. The NIH Project RePORTER is an excellent tool to contrast and compare funding levels. Not only can over all funding be compared, but the tools are there to determine the percentage of behavioral studies funded vs. biomedical studies. The question is, would including this kind of data have provided a far different picture than the one provided by the professors in question?

"As well, is it really all that difficult to find balancing expert sources in this field or any other health and medicine area? In my experience, not really. Although a study done by University of Missouri journalism professors shows that journalists rarely use PubMed for story ideas PubMed contains thousands of research studies with contact information in them – as well as story ideas.

"I in no way condone death threats – not to politicians, nor the rare professor in a controverial field, but I wonder if the real story was buried in a landslide of sensationalism. In the pursuit of the unusual as news did journalism further victimize an often marginalized demographic? Was the professor the victim of victims?

"The question may be whether sensationalism of isolated death threats would be more likely to deter researchers than because they or anyone they knew had actually ever received such abuse.

"*Ms. Benson has reported in the areas where the politics of health and medicine intersect with the psychological for a number of years. Interviews have included patients, patient advocates, advocate organizations, behavioral and biomedical researchers and staff of the government agencies involved."

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