Beer Festival Fundraising Success P 4
Total Page：16
File Type：pdf, Size：1020Kb
Inter Beer festival fundraising success p 4 Our new Hidden faces campaign p 5 Getting online for the first time p 21 Stand up to people who don’t believe in M.E. p 35 ISSUE 90 SUMMER 2015 OUR VISION IS A WORLD WITHOUT M.E. Momentum for M.E. The last few months have been is critical. In July we successfully incredibly busy and exciting for re-registered the All-Party Action for M.E., and I’m confident Parliamentary Group on M.E. (see we can keep that momentum going p 9), and we’ve developed some with our upcoming work too. ambitious plans to ensure the group In May I travelled to Geneva to is effective in tackling key policy raising awareness as well as vital attend the 68th World Health areas to improve outcomes for funds. Hidden faces of M.E. (see p 5) Assembly Summit at the United people affected by M.E. is about the invisible nature of M.E. Nations. World leaders, including On the subject of politics, and how it feels to live with such a health ministers, came together to Westminster-based public affairs and debilitating and misunderstood explore and debate world health communications specialists the condition. We’re working with some issues and to develop plans to tackle Whitehouse Consultancy has social media stars to spread our them together. selected Action for M.E. as its pro messages far and wide. I returned feeling certain that bono client for 2015-16 (see p 9). And last but certainly not least, exploring how to build networks and Through this valuable partnership, don’t forget to book your place at create a bigger collective voice will Whitehouse will help push M.E. up our conference and AGM in London ultimately benefit people affected by the health and social care agenda on 12 November (see p 7). this devastating illness. I’m now while communicating the needs of As always, a huge thank you for developing a proposal for a five-year people with M.E. to parliamentarians. supporting our vital work, and for plan to achieve just that for our We were also chosen as the official continuing to fight with us for Board to consider. This will build on charity for the Great British Beer much-needed change. the collaborative work Action for Festival 2015. In August, staff, M.E. is already undertaking, such as Trustees and volunteers attended establishing an International Alliance the five day event in London to of leading charities across the globe. fundraise and help more than 50,000 (More on that soon!) visitors gain a better understanding As you know, finding a way to of M.E. See p 4 to find out more. mobilise people and significantly September sees the launch of our Sonya Chowdhury increase the profile of M.E. in the UK brand new campaign aimed at Chief Executive Contacting Action for M.E. Medical advice General enquiries Please note that while we cannot give medical advice in response to For information, support, publications and membership specific enquiries, we do have a Call 0117 927 9551 (Mon to Fri 9am to 5pm) wealth of information that we can Write to Action for M.E., 42 Temple Street, Keynsham BS31 1EH make available on request. The Email [email protected] advertising of a product, therapy Visit our Online M.E. Centre at www.actionforme.org.uk or clinic in InterAction does not Find us on Facebook www.facebook.com/actionforme mean that it has been tested or its and Twitter www.twitter.com/actionforme use endorsed by Action for M.E. We strongly advise people to InterAction enquiries examine with scepticism any To submit a letter or notice, give feedback or reply to a box number treatment, therapy or other Write to the editor at the address above approach which claims to offer a Call 0117 937 6620 or email [email protected] cure, has not been subject to research published in respected Welfare Rights Line – NEW freephone number peer-reviewed journals and For confidential advice on all aspects of claiming welfare benefits requires the payment of large Call 0800 138 6544 (closed Fridays and bank holidays) sums of money. Mon and Thu 10am to 12.30pm and 2pm to 4pm Tuesday 10am to 12.30pm and pre-booked appointments 2pm to 4pm Wednesday 2pm to 4pm Donate cost-effectively through payroll giving: find out more on 0117 937 6626 Contents Hot topics Cover story • Our improved, new-look website, launching this autumn, will be much 4 The Great British Beer Festival easier to use and navigate than our More than 50,000 beer lovers showed they care about M.E. current site, helping more people News and campaigns find the information they need quickly and easily. If you’re not 5 Hidden faces of M.E. online yet, check out our article on Our exciting new campaign to raise awareness and funds p 21 to get connected. 7 Advocacy project update • People with a long-term health Our work on a new service and self-advocacy guide condition, even one that is well 9 M.E. in Westminster managed, are eligible for the flu Our exciting partnership with the Whitehouse Consultancy, vaccination free of charge. plus the all-new APPG on M.E. According to NHS Choices, the best time to have a flu vaccine is in the 10 Welfare update autumn, from the beginning of Welfare reform, new WCA guidance and ESA appeals October to early November. Ask your 13 Trustee elections GP or pharmacist for more Have your say about who sits on the Board information and advice if you’re concerned. Research • Our SEE M.E. (Support, Empower and Employ people with M.E.) pilot 15 The CMRC conference in October project is now well underway in Featuring a workshop on patient-reported outcome measures Gloucestershire, South 17 ME Research UK on epigenetics and immune dysfunction Gloucestershire, Bristol and North Plus examining single nucleotide polymorphisms (SNPs) Somerset. It offers specialist employment advice and support to Living with M.E. assist people with M.E. to achieve 19 Mythbusting diets for M.E. their employment goals. Contact us Nutritionist Dr Carina Norris investigates diets for people with M.E. (see p 2) to find out more. 21 Get connected • The Government is bringing Glen Buchanan offers advice for getting online for the first time forward the date when people with an indefinite/long term award of 24 Single parents and M.E. Disability Living Allowance will be Some useful ideas and advice to make life easier invited to claim Personal 35 Standing up to disbelief Independence Payment. Find out Counsellor Joan Crawford explores how to help other people the postcode areas to which this understand M.E. applies at www.tinyurl.com/pip- postcodes Medical matters • The Scottish Parliament’s Welfare 29 Keeping a symptom diary Reform Committee (WRC) has Dr Gregor Purdie explains why keeping a symptom diary is important announced an inquiry into the future delivery of social security in Scotland. 37 Dear doctor Action for M.E. is providing oral Dr Alastair Miller looks at blood clotting and platelets evidence at a session on Tuesday 22 Regulars September that will focus on disability, carers and those who are 32 Creative corner ill. This follows the participation of Your poems and artwork Michael McMahon MSP, Chair of the 50 The last word WRC, at our Health, welfare and Patsy Quinn on how people with M.E. contribute to society work event at the Scottish Parliament in May. InterAction 90 Summer 2015 3 Beer festival fundraising success Action for M.E. raised a whopping £14,280 at the Great British Beer Festival 2015, where we were the official festival charity. More than 50,000 people attended the event – the UK’s biggest beer festival – at London’s Olympia from 11 to 15 August. They were there to taste more than 900 real ales, ciders, perries and international beers, but through their incredible generosity they also showed how much they care about people with M.E. The Campaign for Real Ale (CAMRA) selected Action for M.E. following a nomination by festival volunteer Tony Kennick, who has M.E. Action for M.E. staff (including Clare, Sonya and Jess, pictured right), Trustees and volunteers were there throughout the five-day event, collecting money for up to 11 hours each day. people shared their stories and We could not have achieved this During the festival we had a photo personal connections with M.E., and level of success without the support booth with brightly-coloured props told us how much they valued our of the Whitehouse Consultancy (we and hats, as well as branded presence, as well as CAMRA’s are their charity of the year receiving awareness-raising banners, to support in choosing us. pro bono policy, public affairs and capture people’s attention. For a Over the course of the festival we communications consultancy – see donation we snapped festival-goers were also approached by a number p 9 for more info), and Vail Williams in their garish get-ups, and then of different people and organisations LLP (who have supported us for a shared the photos on Twitter using wanting to explore how we might number of years). Both companies #stopMEstealinglives to reach nearly work together in the future. The sent teams of volunteers along on 133,000 people. Neville Staple Band, who performed two different days. We placed collection tins on the at the festival and are well known in A big thank you to CAMRA and all 29 different bars, and fundraisers the reggae and ska field, has now our volunteers for helping us raise so walked around the enormous venue made Action for M.E.