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Me Voice July 2014

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Me Voice July 2014 July 2014, no. 8 me voice The WAMES Magazine WAMES Welsh Association of ME and CFS Support 1 making the web contents links in me voice 2 me voice work in your subscribe, discuss and contribute browser 3 about wames These should work in Internet vacancy for secretary Explorer, Google Chrome, Opera, awareness and fundraising and Torch. 4 news from Wales local me get-togethers Mozilla Firefox - If ‘This pdf might report hate crime not be displayed correctly’ appears recycle living aids top left under the bookmarks toolbar, click on the box to the right 6 research ‘Open with a different viewer’. Choose your favourite pdf reader 7 welfare and tick the box ‘do this automati- consultations & tribunal info cally for files like this in future’. 9 young people privacy social enterprises me voice the wames education guide If you are concerned about your hormones me voice is published 5 times a information exchange privacy on the Internet, use either the DuckDuckGo or the Ixquick year. You can subscribe to the offers a number of ways to share search engines, and the Aviator 12 severe me day paper copy for £10 p.a., or re- news and views which interest Browser. Check them out on the ceive it free by email, or read and entertain people with ME and/or download it from our who live in Wales (and carers Internet. 14 carers website www.wames.org.uk and family): writing competition social care jargon internet addresses Contact [email protected] • newsblog on website • magazine Because some of these addresses 16 living with me WAMES Subscriptions • facebook are so large nowadays, Tiny URL is healing story The Coach House Frongôg • twitter used where possible to reduce good book about me Aberystwyth SY23 3HN • e-group them in size. Should these not work and you need the original address, 18 news please contact Jan or Tony. We welcome news items, articles, cartoons, jokes, poems, suggestions etc.We will include them whenever it is appropriate. copy dates for the 19 research Send them to: [email protected] magazine: orthostatic intolerance or to the WAMES Subscriptions address in the previous column. 24 Sept. & 15 Nov. 2014 2 about wames WAMES poll on Easy fundraising Pacing In the past 4 months 4 people have been raising money for WAMES Have you tried ‘Pacing’ – has it simply by adding a couple of extra helped? clicks to their online shop. Let us know at www.wames.org.uk One volunteer on a low income has Keep up to date raised £12 by always going shop- ping through We regularly post news items and http://www.easyfundraising.org.uk . research reports on our web blog. Events and local news are posted 2,700+ retailers will give a donation on Facebook and twitter. (of varying amounts) if you sign up Sharon did it! to easyfundraising before shopping Share your concern and questions with them. You can even earn on FB with others living in Wales. donations when you travel, buy insurance or open finance and WAMES secretary Please help by telling friends and WAMES on the Web: family about WAMES’ need for utilities accounts. This post is still vacant and is www.wames.org.uk admin help, which could also be a Think how much money we could limiting the amount of work we can Twitter: @WAMESsmecfs great opportunity for someone to raise every year if even a small carry out. Also, in order to remain a Facebook: /WAMESsmecfs learn new skills. Contact Jan. proportion of the 12,000 people registered charity we will have to with ME in Wales and their families find a replacement trustee soon. Sharon’s sponsored and friends were to shop the easyfundraising way! Interested, but worried the job walk might be too much for you? Sharon Price raised an amazing Llanfairpwllgwyngyllgogerychwyrndrobwyllllantysiliogogoch Perhaps you can only offer to help £640 in May for WAMES funds. for a limited period of time? On a beautiful summer’s day, two English tourists were driving She endured blustery conditions to through Wales. Get in touch and we can discuss complete the 5.54km walk round ways in which the work can be Dinas Head in Pembrokeshire. At Llanfair P.G. they stopped for lunch and one of the tourists asked shared out between more than one Fortunately she suffered no major the waitress, “Before we order, I wonder if you could settle an argu- volunteer to make it manageable after effects ment for us. Can you pronounce where we are, very, very, very for you. slowly?” Thanks to her and her boyfriend Gareth for his support. The girl leaned over and said, “Burrr . gurrr . king.” 3 Ode to ME “The NHS is free from charge but news from wales not free from obligation The con- Anglesey musician Andy Beaumont versation we have with patients has written an ode to ME sufferers cannot always open with the ques- ME Group events bus or train stations. Parking is and their carers, which tells what it tion ‘What can I do for you?’ as avialble. Contact Tina, feels like to have ME. Andy’s wife, though the encounter is one in round Wales [email protected] or 01437 Kate has severe ME and has been which the health service takes onto 454359. ill for 18 years. its own shoulders the whole of the Carmarthenshire ME Group responsibility for that encounter.” Meets on 9 August and 11 October Haverfordwest Carers meetings The song “Ball with no bounce” can at Caemaen Day Centre, Coleshill be downloaded following a dona- More info: http://tiny.cc/iayjjx Terrace, Llanelli SA15 3BT. Please on 30th July, 27th Aug, 24th Sept. Open to all Parent Carers, not just tion to Andy’s JustGiving page http://tinycc/q63jjx ring John James [pm] for further https://www.justgiving.com/ball- details. ME, and all ages of ‘child’. 11am - 1pm and again 7-9pm as many with-no-bounce/ All proceeds will Mid Wales Health carers work. Contact Tina, go to the ME Association’s re- North Ceredigion Yoga Class search fund. Study tailored for people with ME [email protected] or 01437 454359. Meets on Wednesdays, 2.30-4pm, Residents in north and east at Canolfan y Morlan, Aberystwyth. Take responsibility Montgomeryshire are invited to For details contact Cathy Crick on Other support take an online survey giving your for your own health last experience of seeking health 01570 421144 or 07748 031614 or Wrexham – First get together for [email protected] says Health Minister care. http:// people with ME for tea/coffee and a midwaleshealthstudy.org.uk/take- chat. 7th August 2014 at 2.30pm at Speaking at the NHS Confedera- the-survey ME Support in Glamorgan the Riverside Restaurant at tion’s conference in Liverpool, Prof (MESiG) Wrexham Maelor Hospital. Drakeford called on people in The survey will inform the Welsh Tea in Roath Park 4th Aug: 2pm. Wales to take more responsibility Institute for Health and Social Care Meetings 1st Sep, 6th Oct Haverfordwest – Cwtch: a support for their own health, instead of (WIHSC) in their report to the at Llanishen Community Shop, group for young adults aged 18 - merely handing over ownership of Health Minister of the Welsh Gov- Llangranog road (off Templeton Ave), 45 years old who have long term or their problems to the health service ernment. Ends 31 July 2014. Llanishen CF14 5BL. chronic physical health conditions. to deal with. (One of the organisers has ME). Or call in and pick up a question- Contact Christalla 0292976 2347 While it is the role of the Welsh naire in Welshpool at either: [email protected] They meet the first Friday of the Government to create the right The Tourist Information Office www.mesupportinglamorgan.co.uk month during school term time for conditions for people to live The Market Halls talks and social activities. 10 -11.30 healthier lives, members of the The Town Council Offices West Wales ME/FM Group at Furzy Park Community Centre, public must take advantage of this The Library, Brook Street Meetings on 28th Jul, 25th Aug, 22 SA61 1HQ. and fulfil their “duty” to look after Sept. 11am to 1pm at 65 Tudor themselves, becoming “custodians” More info: Gardens, Merlin’s Bridge, Next meeting 6th Sep. www.cwtch- of their own health. http://midwaleshealthstudy.org.uk Haverfordwest, Pembs SA61 1LB. pembrokeshire.co.uk Beth 07974 Transport can be arranged from the 543874 [email protected] 4 Report cases of time if desired. 08456 121 900 Available 24/7 news from wales hate crime! • If it is easier for you, you can A Hate Incident or Hate Crime is a complete the form online at crime or incident committed be- www.reporthate.victimsupport.org.uk Recycle your old Drop in at any time between 10 am cause of who you are or who • You can report an incident that and 2 pm. someone thinks you are, because happened to someone else, living aids whether or not you witnessed it. of your age, disability, sexuality, The Wheelie Good Idea uses old • 40+ organisations to give Advice religion, ethnicity, gender (including and unwanted independent living and Information. Calls are treated confidentially and gender identity) or lifestyle choice. aids and mobility equipment which • get your blood pressure taken you have the option to remain are collected, refurbished and • Local Pharmacy on hand to give anonymous. This may include: exported to Africa. advice • Verbal abuse • Complementary therapies Support is tailored to the needs of • Offensive graffiti This project is run by Clynfyw in • Taster sessions each victim which may include • Threatening behaviour Pembrokeshire and is funded by • Memory & Friendship Café emotional support, practical sup- • Damage to property their community apple juicing • Light Refreshments port or advocacy.
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