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ME/CFS Australia Ltd
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Registered Charity 3104


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PO Box 322,
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1300 128 339

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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.


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Taking action in ME Awareness Month

Friday 13 May 2011

From UK organisation Action for M.E.:


Action for M.E.Taking action in M.E. Awareness Month

13 May 2011

Action for M.E. activities for May, M.E. Awareness Month 2011, focus on welfare and work, NHS services and raising public awareness.


Welfare and work

Action for M.E. is:

1. supporting the HardestHit campaign and will be attending the march against cuts to benefits and services, 11 May. Anyone able is welcome to join us.

2. launching our employment project by publishing our new booklet for employers and leaflet on M.E. in the workplace. To follow: a new booklet for people with M.E. about work and M.E., a video and a workshop for employers planned for the end of September.

3. promoting the forthcoming report: Employment and Support Allowance Work Capability Assessment review, Making it work for fluctuating conditions, produced by partners including Forward M.E. represented on this occasion by the ME Association. Our CEO and Policy Officer will both attend the next Forward ME meeting on 11 May.

4. supplying parliamentarians with M.E.-related questions for oral or written response in Westminster and Holyrood.


NHS services and health

5. putting questions and concerns of people with M.E. to Minister of State for Care Services, Paul Burstow, when he meets representatives from the All Party Parliamentary Group on M.E., 10 May.

6. launching an important new survey of people with M.E.’s experiences of NHS CFS/M.E. services.

7. lobbying (where invited by local patients) to retain specialist services if cuts are threatened eg. Queens Hospital Romford.

8. staffing a stand at the UK’s leading primary and community care conference, 25-26 May, NEC, Birmingham, attended by 5,500 delegates last year.

9. promoting our Scottish election manifesto for M.E. and campaign video, which ask Scottish Parliamentary candidates to support the implementation of the Scottish Health Care Needs Assessment and Scottish Good Practice Statement (and working hard to ensure the re-establishment of the Cross Party Group on M.E., which played a role in securing the Needs Assessment and Good Practice Statement, following the elections on 5 May).


Awareness raising

10. distributing thousands of awareness raising posters and leaflets (get yours free from Alex) through our Members, in mailshots eg. to public libraries and through letters sent to all local press across the UK (those published are reported as they appear in our Daily Press Summary).

11. creating an M.E. awareness icon for Facebook, Twitter and other social media, so that people with M.E. and their supporters can identify as M.E.-aware – and linking it to web pages on M.E. awareness including basic facts, what it’s like to have M.E. and 10 things you can do now.

12. attending awareness events where invited/possible eg. 13 May our CEO, Sir Peter Spencer will speak at a meeting of the new Exeter support group; 18 May, Sara Brooks, Head of Support Services, will speak at an awareness event arranged by Goole M.E./FM group; 18 May, Sir Peter will visit the Leeds CFS/M.E. service; 20 May Action for M.E. will attend the Invest in ME conference, London.

13. reporting other organisations’ activities through our website and Twitter.

14. writing to all newly elected or re-elected Scottish MSPs and Welsh Assembly Members about the issues facing people with M.E.

15. hosting an awareness raising dinner for business people and supporters of the charity in London, 16 May. The event is kindly sponsored by Vail Willams, real estate advisors. Speaker: Lord Puttnam.


For individuals with M.E.

16. offering a taste of what’s to come when our new website is launched, by providing free downloads of our new factsheets on Employment and Support Allowance (ESA) for claim forms issued before and after 3/11, plus our ESA revisions and appeals factsheet and factsheet on the migration process from incapacity benefits to ESA.

17. hosting a virtual coffee morning on our Facebook page.

18. distributing our M.E. Awareness month issue of InterAction magazine to Supporting Members, which includes free copies of our awareness poster/leaflet and announces our AGM and Open Conference in October. The conference will feature speakers from our strategic research projects: the Biobank for M.E., Post mortem tissue bank, National Outcomes Database and National Observatory.

19. issuing our M.E. Awareness month editions of e-newsletters, Keep Me Updated and GroupAction (Scottish Hub news having gone out in time for the Scottish elections).

20. for people of faith, supplying prayers for M.E. which they can use privately themselves or share publicly in their place of worship.


NB. Please note that unfortunately Sir Peter's meeting with Helen Clements, policy lead, in-work health, Department for Work and Pensions, which was due to take place tomorrow, 6 May has been cancelled due to unforeseen circumstances. There are plans to reschedule and a new date will be published in due course.


The above originally appeared here.



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