Med thumb narcolepsy brainwaves

A 12-year-old British boy who developed narcolepsy in 2009 after receiving the swine flu vaccine stands to receive about $135,000 from the UK government, The Guardian reported. The boy’s family, whose names have not been released, filed the suit after the government denied their disability compensation claims. The ruling paves the way for up to 100 other families of narcoleptic children to collect damages on the same grounds.

In 2009, the UK rolled out a national vaccination program to curb the spread of the H1N1 pandemic. About six million people received Pandemrix, a vaccine manufactured by pharma giant GlaxoSmithKline. After inoculation, a small number of children (one in 55,000, according to a 2013 study) developed sudden-onset narcolepsy, a neurological condition that induces severe daytime somnolence, as well as possible night terrors and hallucinations. Side effects from vaccines are not uncommon. (Editor’s note: Autism is not one of them, however.)

Families of some of the narcoleptic children applied to receive money under the British Department for Work and Pension’s payment scheme. To qualify for compensation, victims had to show they were 60 percent disabled, defined as a limitation equivalent to the loss of one hand. As you might have guessed, comparing narcolepsy to limb loss isn’t clear-cut; the DWP tried to avoid awarding narcolepsy victims. Parents of narcoleptic children contend, however, that it’s absurd to suggest narcolepsy doesn’t entitle them to money, given the debilitating nature of the condition.

The Guardian reported:

“Anthony O’Mahony, whose 17-year-old daughter, Ciara, developed 2009, said that the government’s suggestion that illness was not “severe” was offensive to victims. “To say that it’s not that impactful just makes me mad,” he said. “Narcolepsy affects everything that Ciara does and always will do.”

The thorny issue is the relationship between Pandemrix and pediatric narcolepsy itself. In 2013, Stanford University researchers published a study in the British Medical Journal implicating Pandemrix. The study corroborated prior research on the autoimmune basis of the disorder. Narcolepsy sufferers, the 2013 paper said, had lower-than-normal levels of hypocretin, also called orexin, a neurotransmitter involved in regulating wakefulness. The paper proposed that the affected children had an adverse response, sparking production of immune cells that destroyed hypocretin.

And this is where it gets even thornier, from a scientific perspective. In July 2014, that study’s authors retracted their paper. As it turned out, they couldn’t repeat the main finding that narcoleptics produced immune cells more responsive to hypocretin than those of non-narcoleptics.

(Multiple research teams have independently confirmed the narcolepsy-autoimmune theory, including immunologists at Tel Aviv University who, this past March, published a study in Pharmacological Research. They, too, observed depleted hypocretin and, Sleep Review Mag reported, found narcolepsy to “bear the trademarks of a classic autoimmune disorder.”)

Emmanuel Mignot, the BMJ study author, shed some light on what we know about narcolepsy as an autoimmune disorder. It is 100 percent established, he said, that narcolepsy is caused by the destruction of about 70,000 hypothalamic neurons, which produce the alertness-inducing hypocretin. We’re not totally sure how narcolepsy kills hypocretin, but Mignot is certain the immune system is involved.

So how did Pandemrix turn spry young lads and lasses into narcoleptics? Bad timing, bad coincidences and bad luck, said Mignot.

First, the kids needed to have a genetic predisposition to narcolepsy. They also, most likely, had already produced hypocretin-killing immune cells in response to pre-existing infections. A trace amount of swine flu virus reactivated those immune cells, which accidentally attacked hypocretin cells rather than the disease itself.

Researchers are working to understand the autoimmune process behind narcolepsy, and Mignot is optimistic about upcoming advancements. In the meantime, we’re getting better at treating the neurological disorder, thanks in part to the development of drugs — technically known as orexin agoists — that can replace the neurotransmitter post-depletion.

It should be noted that these kids may have developed narcolepsy eventually, whether they’d been vaccinated or not.

“Maybe be they already all had the abnormal cells that got activated,” said Mignot, “it is just that it would have taken longer for this to happen in many cases. Nobody knows.”