Blog: Opinions

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British Medical Journal article on Pandemrix vaccine

21 September 2018

Publishing this link to today’s British Medical Journal article on the use of the Pandemrix vaccine.

Have to question where the BMJ have been for the last 9 years and why they have chosen to focus on events in the Republic of Ireland.

That story needs telling but so do they all. Perhaps it felt a bit too difficult to publicise here when we needed support.

Numbers quoted from our website are historic & we were not contacted to re-validate ahead of this article being published.

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Old & New Friends in Oslo

23 April 2018

I left home for Oslo yesterday morning, having had an invite to attend and speak at Frambu (www.frambu.no), from old friends at NevSom - Norwegian Centre for Expertise for Neurodevelopment Disorders and Hypersomnias, Oslo University Hospital, a part of the Norwegian Advisory Unit on Rare Disorders.

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Is Wakix® the new Xyrem® ?

25 June 2017

Is Wakix® the new Xyrem® ?

I do not ask this because of any similarities between what these two medications can do for people with narcolepsy but for other, far more frustrating reasons. Like Xyrem®, Wakix® has orphan drug status, its effects are not well understood, it is perceived as expensive and NHS adoption is slow because it is relatively new, despite the relevant NICE guidelines.

On May 23rd, 2016, I wrote the following paragraph:

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What happens when you don’t provide us with the medicine we need

20 April 2017

Following a decision on Tuesday NOT to approve the use of sodium oxybate for an adult with severe narcolepsy & cataplexy due to both benefit & cost issues, we drove to Devon to attend a Treatment Decision Review Panel at Exeter Town Hall.

I would like you all of you with narcolepsy out there, including your friends and family to share this picture because it shows the impact of the decision taken for the individual.

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Sleep disorder sufferers await ruling over role of swine flu jab

24 January 2017

On behalf of Narcolepsy UK, I have contributed personally to evidence for all three of the cases quoted here, know the families concerned and been through some of the sad events that have transpired and are mentioned in this article. I will, yet again, be in the court this week to hear on what tenuous basis the DWP think they can appeal a decision that they have already been overturned on twice. The Vaccine Damage Payment Act of 1979, as the government have always been quick to point out, is not a compensation scheme and I agree with them on that point.

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NUK attending Swedish Narcolepsy Association conference

18 November 2016

On my way to Stockholm to attend and speak at the annual conference of the Swedish Narcolepsy Association, Narkolepsiföreningen Sverige (NFS) who have funded the trip.

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No evidence for a link between Fluenz Tetra and narcolepsy, says MHRA

17 November 2016

MHRA believes that Fluenz Tetra and other currently-used influenza vaccines are not a cause of narcolepsy.

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Response to inquest result after death of narcolepsy sufferer

11 August 2016

All Katie ever wanted was to work with children and it was this desire that led to her employer requiring her to have the Pandemrix (H1N1) influenza vaccination in 2009.

One simple life decision led to a domino effect that led to Katie’s death on 23 September 2014. This vaccination, and delays in medical treatment combined with a lack of understanding of the extremely debilitating nature of narcolepsy all contributed to this tragic situation.

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Want to display some art? We can help.

15 June 2016

Narcolepsy UK are planning to host an exhibition of art and other creative endeavors at the annual UK conference.

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New Narcolepsy UK T-shirt Design

30 May 2016

Envisaged to speak directly about the experience of having narcolepsy, this new design is available now.

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