Lifting The Burden Newsletter - Issue 2 (April 2008)

Welcome to LTB News, a regular newsletter to keep you up to date with what's happening - and what is planned to happen - in Lifting The Burden: the Global Campaign to Reduce the Burden of Headache Worldwide.

Welcome to the second issue of LTB News and many thanks to those of you who provided feedback on our first issue. We are delighted that there is such interest in the publication and, based on your suggestions, we are aiming to make the newsletter a shorter, more frequent publication.

It's been a busy start to the year for everyone involved in the Lifting The Burden campaign with new initiatives underway and more in the planning stages.

We also need your help! As part of our aim to fill in the knowledge gaps on the impact of headache on the lives of sufferers, Lifting The Burden, is working with the World Health Organization on a publication called Voices from Under the Burden that will feature the real life experiences of headache sufferers. We need to hear from sufferers in their own words about the many ways living with headaches adversely affects their lives - and the lives of family and friends - and what strategies they have developed to cope with the burden of headache disorders. If you work with anyone you feel has a story to share, especially those sufferers from regions of the world where headache prevalence is under-reported, such as Asia, Africa and Latin America, then we would be grateful if you could send details to the usual e-mail address below. Stories should be around 500 words (maximum 2 pages).

Hopefully, we will be able to collate a range of stories from individuals around the globe to help illustrate the fact that headache disorders affect people in every society and all suffer a diminished quality of life.

To contact me on any subjects relating to this newsletter, or that may be of interest, please use my email: isismedical@btinternet.com. If you need help with any technical issues regarding the newsletter then please contact: technical.support@l-t-b.org.

And remember to bookmark www.l-t-b.org for all that's new - and not new - from Lifting The Burden: the Global Campaign to Reduce the Burden of Headache Worldwide.

What's been done

• Results of first ever headache prevalence study in Georgia - Eastern Europe is one of the key areas where there is a dearth of evidence to demonstrate the headache burden. The Republic of Georgia is the first country where Lifting The Burden has now begun to fill in the knowledge gaps. Results from the first ever prevalence study are now available. For more, click here.

• European project reveals extent of depression comorbidity in headache - Eurolight - a partnership activity within Lifting The Burden, supported by a grant of the EC Public Health Executive Agency and promoted by the Centre of Public Health Research, Luxembourg. Its purpose is to survey the impact of headache throughout Europe in order to inform policy makers. As part of this work it has completed a pilot survey of sufferers to determine the severity of depression as a comorbidity among headache sufferers and the impact of headache frequency. For more, click here.

• Where is the knowledge from low and middle income countries? - It's thought that headache research emanating from low and middle income countries accounts for a small proportion of the total knowledge on primary headaches. Lifting The Burden conducted an analysis to determine if this was the case. For more, click here.

• First Russian prevalence pilot completed - as part of Lifting The Burden's endeavour to fill the knowledge gaps exposed by its global prevalence survey, the first pilot has been completed in Moscow with a further pilot beginning next month in Smolensk. These pilots will pave the way for a full scale population-based survey sampling urban and rural populations in 21 of the 22 areas of Russia. Details of the pilot findings will be published in future issues of LTB News.

• India prevalence study planned - India is another country with a dearth of prevalence data, a situation Lifting The Burden hopes to remedy. The investigators met in March to discuss the sampling methods and protocols for a multi-centre survey covering both rural and urban populations. We'll bring you more details in future issues of LTB News.

Helping to treat headache

• New information leaflet for people with headache coming soon - a new information leaflet entitled "Doing the most to help yourself" will soon be available to download from the Lifting The Burden site. Leaflets already available to download include migraine, tension-type headache, cluster headache, chronic headache and headache and hormones.

• Translations of existing headache information leaflets now available - leaflets on tension-type headache, migraine, cluster headache and chronic daily headache now translated into French, German, Dutch, Italian, Spanish and Portuguese. These will be available on the website once website translation is completed. In the meantime contact Marianne Mac Donald for copies on isismedical@btinternet.com

• HURT index - an initial clinical study to validate the HURT (Headache Under-Response to Treatment) index is being planned for this summer in Germany, UK Italy and Denmark.

About Lifting The Burden

• For a reminder of Lifting The Burden's vision and aims, click here.

• Lifting The Burden at the International Headache Research Seminar - click here.

And to end for now ...

We welcome your feedback and thoughts on Lifting The Burden, so don't hesitate to get in touch.

Marianne MacDonald
Editor