Latest Headlines

Latest developments on the relationship between orexin, the circadian rhythm and body weight
While not related directly to narcolepsy two interesting papers published last month do show how problematic weight gain and loss can be in an individual with narcolepsy. (read more)

The beginning of the end of the Pandemrix story?
We though the recent Health Protection Agency's report on Pandemrix-associated narcolepsy would drawn a line under the arguments about causality.  However, the issue still rumbles on. (read more)

Decision making and addictive behaviours in narcolepsy
Another small reason why having narcolepsy is so difficult, not only for you but family and friends.(read more)

Association between Pandemrix vaccination and narcolepsy in England
A recent paper suggests that an association between vaccination with Pandemrix and childhood narcolepsy exists in England. The risk is similar to that previously reported in Sweden and Finland. (read more)

Response to the above paper by Narcolepsy UK
In view of the important findings of this paper Narcolepsy UK has prepared an official response (read more)

International Paediatric Sleep Association conference
A number of members including many new ones attended the public session of this major International Conference held in Manchester in early December.
Read more about the conference >>

A Really Useful Donation
It is amazing where an opportunity for donations to the charity appears; who would have thought that a visit to a West End theatre would end up with a sizable gift to Narcolepsy UK?
Read More >>

Support from the Worshipful Company of Actuaries
We are delighted to inform members that the Worshipful Company of Actuaries have awarded a three year grant to Narcolepsy UK to support its charitable activities. In particular the grant will be used to support meetings and conferences.
Read more about their support

Is Pandemrix narcolepsy batch related?
This might be something too important to let the Department of Health check; if your child developed narcolepsy after having Pandemrix please contact Narcolepsy UK with the vaccine batch number. We will collate a response and let you know the answer as soon as possible. I am indebted to our friends from Sweden who passed on this story; as always I have double-checked the sources, this time with MPA, The Medical Products Agency in Sweden.
Read More about Pandemrix being batch related >>

The Employment and Support Allowance
In 2008 Employment and Support Allowance (ESA) replaced Incapacity Benefit and Income Support (on the basis of disability or incapacity for work) for new claimants. Narcolepsy UK has prepared a major document dealing with how people with narcolepsy can claim the benefits that they are entitled to. We hope that it will help demystify the situation and give you some help in understanding what is going on and how to fill out your application form. (read more)

Hypocretin falls as narcolepsy develops
It is now accepted that many people with narcolepsy and cataplexy have low hypocretin (orexin) levels in their brain. A recent paper has shown that these levels fall at the same time as the patient develops narcolepsy. (read more)
 

Information on familial narcolepsy in the media
A national newspaper has reported on the work carried out to identify the causes of narcolepsy in 12 members of a large family. (read more)

Growing evidence of Pandemrix link to Narcolepsy
Article published by Reuters on 22nd January, citing growing evidence for the Narcolepsy link to the GSK swine flu vaccine. (read more)
 

Does H1N1 influenza cause narcolepsy?
There is increasing information which suggests that infections with H1N1 'flu can trigger narcolepsy in some individuals. (read more)

Do children present with narcolepsy differently to adults?
A recent paper suggests that there is a difference in the way that adults and children present with narcolepsy. (read more)

New information on narcolepsy and H1N1 vaccination published in Finland
A Finnish weekly magazine has published information on recent research from a leading immunologist in that country. (read more)

Neurological complications following H1N1 'flu
Infection with H1N1 influenza can lead to neurological complications. (read more)

Pandemrix reports published
The Vaccine Adverse Events Surveillance & Communication group (VAESCO) issued their long-awaited report on Pandemrix vaccine and the onset of childhood narcolepsy on September 20th 2012. This was followed on the 21st September by a report from France into cases reported in that country. (read more)

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