1. Peter Spencer Chief Executive – Action for M.E. www.actionforme.org.uk Employer Workshop 27 September 2011

2. Who are we? UK’s leading charity working to improve the lives of people with M.E.

3. Action for M.E.’s mission To transform the lives of people with M.E. For the better whilst working towards ultimately overcoming M.E.

4. Three Main Areas of Activity Campaign to educate and achieve change Empower and support people with M.E. Promote and fund Scientific Research with biomedical research as the highest priority

5. What is M.E.? Complex illness classified by the WHO as a neurological condition. Heterogeneous. Symptoms include:- Extreme exhaustion Muscular skeletal pain Flu like symptoms Memory and concentration problems Headaches Chaotic sleep Etc and the condition fluctuates over time

6. Impact of M.E./CFS Medical Symptoms Employment Finance Friendships Family relationships Mobility Isolation In short – it wrecks lives without actually killing people

7. What is the Prevalence? Depends on criteria you use for diagnosis General figure of 0.2 – 0.4 % of population gives around 250,000 in UK The secondary care clinics use wider diagnostic criteria that apply to some 2% of population - well over 1 Million Many of your employees are affected but it is often not reported because of the stigma and scepticism surrounding this condition. Early recognition and intervention by health professionals and the employer is beneficial for both the organisation and the employee.

8. I Issues for Employers The Equality Act defines disability as: “a physical or mental impairment that has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities.” M.E. complies with this definition and so many people with M.E. ‘qualify’ as disabled under the Act. Employers are obliged to make ‘reasonable adjustments’ for a disabled employee or potential employee So what are the reasonable adjustments that are appropriate here? And are they any different to those for other neurological conditions? How can we best share exemplary practice and showcase it?

11. Aims of this workshop Raise awareness and increase understanding of M.E. in the workplace Identify tools/measures to further promote good practice Build relationships for possible joint working

12. Over to Trish Caverley

16. Aims of the workshop Raise awareness and increase understanding of M.E. in the workplace Identify tools/measures to further promote good practice Build relationships for possible joint working

17. An Invitation Please work with us by :- Supporting further “M.E and work” initiatives Displaying M.E. awareness posters Sharing good practice via Action for M.E.’s website and/or publications Joining a virtual advisory group to promote good practice in supporting PwME in the workplace etc

18. Thank You Allen and Overy LLP Andy Noad Bill Gunnyeon – DWP Chief Medical Adviser Sue Pemberton – Leeds and W Yorks CFS/M.E. Service You all for contributing Trish Caverly – facilitator Sara – for making the arrangements Heather for producing the Employer’s Guide to M.E. and for proposing the workshop