23 Mar (EXAMINER) – In 2011, Neurologist Markku Partinen was ridiculed by other scientists who questioned his methods and motives, and raised doubts about his mental stability. In an article published on Reuters last Thursday, he says that colleagues even avoided him. Partinen, director of the Helsinki Sleep Clinic and Research Centre, discovered that GlaxoSmithKline’s vaccine Pandemrix may be linked to an increase in cases of narcolepsy,a rare sleep disorder, in children and young people. He knew that his findings might help limit the risks of narcolepsy for other children around the world, but was afraid of exposing his findings since the work was sure to generate scientific suspicion and public anxiety. He struggled to get his paper on the vaccine published.
It is an extremely tough challenge for scientists to balance compelling data with public concern over vaccines and their side effects. Dr. Andrew Wakefield, a British doctor made claims linking the measles-mumps-rubella (MMR) vaccine to autism and as a result of all of the criticism and shun by the scientific community that he received, some scientists say they are more hesitant to credit reports of potential side effects from vaccines. Wakefield has many followers, especially in the United States, who question the use of any vaccine and acknowlegded that many vaccines have unintended consequences. Wakefield now lives in Austin, Texas and told Reuters that he stands by his findings. He also says he was subject to “false allegations” in a subsequent investigation by the British Medical Journal. He took a defamation lawsuit out in Texas against the British Medical Journal, its editor Fiona Godlee and writer Brian Deer but it was dismissed last year when the court said it did not have jurisdiction. Wakefield is appealing that decision.
Partinen’s discoveries have now been replicated and confirmed by at least four independent teams of international scientists and studies in Sweden, Finland, Ireland, Norway and Britain have also shown the risk of developing narcolepsy is between seven and 13 times higher in children who were immunized with Pandemrix than in those who were not. European drug regulators now recommend that the vaccine no longer be used in anyone under 20. GlaxoSmithKline acknowledges the statistical association.
Another Finnish scientist agrees with Partinen’s results and is probing the mechanics of the Pandemrix-narcolepsy link. She thinks that it may have to do with the vaccine’s super-charging effect on the immune system. Outi Vaarala says that she has found herself bathed in emails and phone calls by people on one side accusing her of undermining trust in vaccines, or on the other side asking for her to support anti-vaccine measures. She told Reuters that,
“There’s not the kind of open discussion we used to have. You’re afraid you will lose your whole career if you say something bad,” and added, “When you’re dealing with vaccine it suddenly becomes like working in politics, or religion.”
Partinen lead the first Nordic Symposium on Narcolepsy and its links to the H1N1 swine flu vaccine. He told reuters, “When we found this, we wanted to publish our results and spread the news to the world because we knew Pandemrix was also being used in other countries,” and added, “But there were big problems.” Partinen approached the New England Journal of Medicine, and submitted his study for publication. The journal asked for several revisions to the paper, then finally declined to accept it.
“After that we sent it to The Lancet,” he said and while it is not unusual for such high-level medical journals to reject many papers, Partinen said he was shocked by the strength of The Lancet’s resistance to his. He said, “It was quite exceptional, they asked for revision and revision and revision,” and said, “Then they said they’d made an editorial decision – that they couldn’t publish it because we didn’t know the (biological) mechanism (behind the link between narcolepsy and Pandemrix).”
Partinen argues that scientists don’t know the biological mechanisms behind a many diseases including multiple sclerosis and diabetes and yet The Lancet is full of peer-reviewed papers about those. The Lancet nor the New England Medical Journal would comment on their editorial decisions.
In March 2012, by the time Partinen’s study was published in the open-access journal of the Public Library of Science, PLoS One, many other scientists had replicated his findings, the H1N1 flu pandemic that Pandemrix was designed to protect against had been declared over, and the vaccine’s use had been restricted. For those with narcolepsy, it was already too late. It took three years to properly inform the public about the link between Pandemrix and narcolepsy.
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