Useful Links

National Organisations that provide information and assistance to people affected by ME.

The ME Association provides information, support and practical advice for people who are affected by ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome), their families and carers. They also fund and support research, and offer education and training. ME Connect: 0844 576 5326, open 10–12am, 2–4 and 7–9pm seven days a week.

Action for ME is the UK’s leading charity dedicated to improving the lives of people with ME. They have been at the forefront of the campaign for more research, better treatments and services since 1987, and they provide information and support to people affected by ME. Telephone support: 0845 123 2314, 11am–3pm, Monday to Friday.

Approximately 200,000 people in the UK suffer from ME. Some do recover. However, approximately 25 per cent of sufferers remain long-term ill and severely disabled by it. Many are left isolated, housebound or even bedbound. ME affects people from all walks of life, all age groups and can strike when you are least expecting it. The 25% ME Group exists to support all who have the severe form of ME — including the housebound, bedbound and wheelchair users — and their carers. Telephone: 01292 318611.

AYME (pronounced ‘aim’) is the largest charity for children and young people with ME/CFS, with over twenty years of knowledge and experience about how this illness affects children and young people. Local rate helpline: 08451 232389 Monday–Friday, 10am–2pm.

Tymes Trust is the longest established national UK service for children and young people with ME and their families. It is a respected national charity whose entire professional team give their time free of charge. They work constantly with doctors, teachers and other specialists, and played a major role in producing the children’s section of the Department of Health Report on CFS/ME (2002). Telephone: 0845 003 9002 Advice Line hours: 11am–1pm and 5pm–7pm weekdays. Outside these hours you may leave a message and they will call you back.

The links to the local offices of national charities or organisations.

Richmond upon Thames CAB can provide you with free, independent, confidential and impartial advice on the following areas: benefits, consumer matters, debt, education, employment, health, housing, immigration and nationality, the law, relationships, tax and so on. Telephone: 0844 826 9700 (Centralised Telephone Assessment Interviews).

KCABS is an independent charity, and a Company limited by Guarantee. They offer advice and information on a wide range of subjects, including welfare benefits, debts, housing, employment, relationships and legal issues. Telephone: 0844 826 9701, 24-hour telephone advice.

Age Concern Richmond upon Thames, a well respected independent charity, forms part of an organisation whose name is renowned throughout the United Kingdom. They work across the borough to improve the quality of life for older people and to enhance their status and influence. Their mission statement: ‘To promote the well-being of all older people and to help make later life a fulfilling and enjoyable experience.’

Age Concern Kingston upon Thames is a leading third sector provider of services, with a reputation for quality and value. We also work in pioneering ways with children through our award-winning intergenerational projects. Telephone: 0845 601 1149.

National Campaigning organisations campaigning for funding biomedical research.

ME Research UK is a charity with an international remit funding biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS). Its principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS, but it also has a mission to ‘Energise ME Research’. Telephone: 01738 451234.

Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (ME), as defined by WHO-ICD-10-G93.3. They have links nationwide and also internationally via their membership of the European ME Alliance. Their aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of ME. This should lead to the development of a universal diagnosis of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness. Telephone: 02380 251719 or 07759 349743.

Research into Myalgic Encephalomyelitis

ME Solutions is a charity dedicated to finding a breakthrough in the treatment of Myalgic Encephalomyelitis. They remain convinced that the only way to find long term answers to this debilitating disease is through targeted and comprehensive biomedical research, focusing on the physical causes of ME. Telephone: 020 8995 4152.

Sites set up by people with ME including practical ideas for coping with ME.

Meetup is an easy site, aiming to list all the active support groups in the South-East.

Network MESH is a thriving ME self-help group covering West London. We were established in the late 1980s and have grown significantly since then. We currently have around 145 members, most of whom live in the West London area.

The idea behind this website was to try to create a guide to ME which doesn't just mindlessly repeat the same inaccurate myths and propaganda again and again but instead focuses on the available facts.

Information Exchange Forum.

ME in the North East is an ME charity covering the Northern Region, from the Scottish Borders to North Yorkshire and including North Cumbria. Covering a population of three million with an estimated 12,000 people with ME (approx 2000 are young people up to 25 years).

Offering groups and resources for improving your quality of life as a person with Chronic Fatigue Syndrome or Fibromyalgia. Founded in 1998.

ME/CFS: Helpful Hints for Daily Living contains a collection of practical hints for those suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), including information on services and resources, with contact details to support and assist sufferers, their carers, families, friends, and health care practitioners.

These tips are a product of the ingenuity and experience of countless members of the ME community. For years practical tips have been passed through our community by word of mouth and pen. It is our hope that ‘The ME Tips Collection’ will make this easier.

This site is the home for Severe ME/CFS: A Guide to Living by Emily Collingridge, a comprehensive reference book.

You might find these short videos useful, interesting or just entertaining.

ME/CFS video for the friends and family of sufferers.

Dr Charles Shepherd describes the symptoms, diagnosis, and treatments for Chronic Fatigue Symptom.

Annette Barclay has had chronic fatigue syndrome, also known as ME, for over 25 years. She talks about how the condition affects her life and the things that have helped her to stay happy.

Video, ‘Setting the Pace’ — a guide to pacing for people with CFS/ME.

DVD Teachers’ Guide for reintegrating children with ME into school.

Miriam suffers from ME. She tells us what its like to live with the condition. She’s also campaigning for a dedicated ME centre in her home town.

A video diary by Greg Crowhurst raising awareness about the physical reality of severe ME.

A video by Greg and Linda Crowhurst raising awareness of ME/CFS from a carer’s and sufferer’s perspective and the need to fight for recognition.

Other sites that might assist you.

The Chronic Fatigue Service at St Helier and Sutton hospitals is the local multi-disciplinary team and clinical network coordinating centre for people with chronic fatigue syndrome in South-West London and Surrey. Telephone: 020 8296 2000.

Their mission is to create a Think Tank where top scientists from relevant fields can discuss current ME knowledge in order to determine the most crucial direction of future research, and to provide a reliable source of cutting-edge ME information that ESME will incorporate in the education of medical professionals.

Disability Alliance is a national registered charity which works to relieve the poverty and improve the living standards of disabled people. It provides information on social security benefits, tax credits and social care to disabled people, their families, carers and professional advisers through their member groups. As we are a member of this organisation as a group we will forward requests for advice.

Light-hearted look at disability.

TFL have produced maps of the London Underground indicating the ‘step free’ stations. Follow the link and scroll down to Step Free PDF.

Richmond AID is a charity of and for disabled people in the London Borough of Richmond upon Thames. It runs a number of projects such as an advice service, gardening project, access work and outreach work. It also has a team of specialist Benefits Advisors who provide benefits checks, help with form-filling and support on making claims and appeals. Benefits Advice Line: 020 8831 6070; Richmond SPADE: 020 8831 6415; DAAC Reception: 020 8831 6080, Mobile/ SMS: 0789 4215835. The Richmond AID Disability Information Handbook of organisations and services available for disabled people, greatly assisted us in supplying this Richmond information. Handbook costs over £2. If you download it free all donations towards it would be welcomed by RAID. It is available as a Word read-only document and in PDF from RAID's website, go to 'Publications' then 'Factsheets'.

RUILS is a charity and not-for-profit company limited by guarantee. It is an independent, grassroots, self-help organisation that is user run and led by its peers — the people who use its services. RUILS acts as the champion, representative and peer supporter of all disabled and older people who have social care needs. It serves those who are in receipt of a Personal Budget or use Direct Payments, Personal Assistants or other means of support to achieve greater independence and well-being. For Information about the services and events available, please call 020 8831 6093/4.

They provide social care and help at home, occupational therapy, respite care, residential care and home adaptations and other services. Contact Adult Social Services: Richmond: Telephone: 020 8891 7971 (prefix 18001 for Textphone Users). SMS Text: 07507 512 733, Fax: 0800 014 8359. 9am–5.15pm, Monday to Thursday and 9am–5pm, Friday. Emergency Phone: 020 8744 2442. Minicom: 0845 600 7752. Type Talk: 1800 1 020 8744 9414.

KCIL is an independent, user-led organisation that has been working for 40 years to empower and support disabled people in the borough of Kingston-upon-Thames. We campaign for full equality of status, opportunity and inclusion for all disabled people and provide independent living/disability related services. Our services are targeted at all disabled people regardless of age/impairment, but are also available to non-disabled people or organisations. Telephone: 020 8546 9603.

Please make contact if you need support or advice for yourself, or if you are concerned about the welfare of another person. Telephone: 020 8547 5005; Text: 07797 806 521, 07903738043; Minicom: 0845 600 7752; Type Talk: 18001 020 8744 9414. Office hours: Monday to Thursday: 8.45am–5pm; Fridays: 8.45am–4.45pm. Adults Emergency: Duty Team Telephone: 020 8770 5000, Fax: 020 8770 5318. Minicom: 020 8770 5178; Text Relay: 0800 7311888 (8am–6pm).

These teams will help with rehabilitation and support after a spell in hospital. Kingston Hospital Team: Telephone: 020 8546 7711, extension 3328. West Middlesex Hospital Team: Telephone: 020 8321 6523.

This service gives you useful information on all areas of health. It is staffed by qualified nurses and can sometimes reassure and save you a trip to your GP. It also has a very useful website for information and advice. Telephone: 0845 46 47, open 24 hours.

Seven days a week, every day of the year. Monday–Friday: 8am–10pm; Saturday, Sunday and Bank Holidays: 8am–9pm. At Teddington Memorial Hospital, Hampton Road, TW11 OJL, Telephone: 020 8714 4004.

Providing Information on the following Health Costs. Free Prescriptions. Free dental treatment and dentures. Free sight tests and vouchers for glasses. Free NHS wigs and fabric support. Refund of fares to and from hospital. Free healthy start vouchers for milk, fruit and vitamins (if pregnant or has a child under five). Telephone: 0845 337 3063.

Kingston PALS offer a wide range of information about NHS services. Kingston Hospital: Telephone: 020 8934 3993.

West Middlesex PALS offer a wide range of information about NHS services. West Middlesex Hospital: Telephone: 020 8321 6261.

Richmond and Twickenham PALS offer a wide range of information about NHS services. Telephone: 020 8973 3111.

The Community Alarm Service: Careline is a Council alarm service linked to a control centre providing a 24-hour response service for disabled or elderly people. Richmond and Kingston Contact: Careline Control Centre: Telephone: 0845 600 7413.

A network of local individuals and organisations dealing with local health needs in Richmond that is calling for residents to receive the care and support which best serves their health needs. Richmond LINk: LINk Service Manager, 1 Princes Street, Richmond-upon-Thames TW9 1ED; Telephone: 020 8255 8500.

A network of local individuals and organisations dealing with local health needs in Kingston that is calling for residents to receive the care and support which best serves their health needs. Kingston HealthWatch (formerly Kingston LINk), Siddeley House, 50 Canbury Park Road, Kingston-upon-Thames KT2 6LX. Telephone: 020 8974 6629; Fax: 020 8255 8804.

The DWP Benefit Enquiry Line provides advice and information for disabled people and carers on the range of benefits available. The person taking your call will not have your personal papers but will be able to give you general advice. Telephone: Freephone 0800 882 200; Text phone 0800 243 355 Opening Hours: Monday to Friday 8.30–6.30, Saturday 9.00–1.00.

Provides initial legal advice on problems, provided free of charge by legally qualified volunteers. First Floor, 1 Princes Street, Richmond-upon-Thames TW9 1ED. Telephone: 020 8891 2105.

Disabled people and their families, carers and advocates are all welcome to get in touch with our helpline for advice. Telephone: 020 7791 9800 (Monday–Friday 10am–1pm and 2–5pm). Fax: 020 7791 9802; Text phone: 1800 1020 7791 9800.

In Richmond if you or your partner is disabled or on a low income, you may be able to get a means-tested Home Grant to help pay for small repairs or improvements. Disabled residents on a very low income are the first priority for council assistance. Contact: Residential Services, Telephone: 020 8487 5123.

For small repairs, Richmond Handyperson Service supports residents of over 60 years of age or who have a disability. It assists with any practical job that helps an older or disabled person, such as repairing a curtain rail — fitting new or replacement locks — changing a light bulb if you are not confident on a pair of steps — changing tap washers — fit a key safe (available to buy from Handyperson) — garden tidy-up service — safety and security check. There is a charge for this service of £20 for a two-hour visit or £40 for a four-hour visit. All materials are charged at cost price except for materials that have been donated to us, which are supplied free of charge. Telephone: 020 8876 0620.

This service in Kingston is for all over 55s. The cost is £20 for two hours, plus the cost of any materials. Clients will be expected to pay on the day. Our handyman can fit a grab rail — fit a curtain rail — fit a key safe — assemble flat pack furniture — fit a spy hole, window or door chain — turn a mattress — security checks — change a light bulb — fix a shelf to a wall — re-seal a bath or sink — hand a picture/mirror — make safe loose carpeting. There is also a home safety check and a referral service for a fire safety check. For more information and to book an appointment, please contact the Handyperson Coordinator, Heather Bruneau. Telephone: 020 8408 8177.

A centre which will let you have a wheelchair to go round the shops. Electric wheelchairs, electric scooters and manual wheelchairs are all available. Kingston Shopmobility, Level 2, Eden Car Park, Union Street, Kingston-upon-Thames. Telephone: 020 8547 1255.

A centre which will let you have a wheelchair to go round the shops. Electric wheelchairs, electric scooters and manual wheelchairs are all available. Hounslow Shopmobility: Blenheim Centre, Prince Regent Road, Hounslow. Telephone: 020 8570 3343.

If you have permanent and severe walking difficulties, the Blue Badge Scheme allows you to park close to places you wish to visit in the UK and in Europe. The charge for a badge will increase from £2.00 to £10.00 (payable by cheque or postal order only), which is valid for three years. If you think you may be entitled to a Blue Badge, you can call Community Care Services in Kingston 020 8547 6008.

If you have permanent and severe walking difficulties, the Blue Badge Scheme allows you to park close to places you wish to visit in the UK and in Europe. The charge for a badge will increase from £2.00 to £10.00 (payable by cheque or postal order only), which is valid for three years. If you think you may be entitled to a Blue Badge, you can call Community Care Services in Richmond 020 8831 6096.

Motability is a registered charity which offers different schemes to help you obtain a vehicle. If you get the higher rate mobility component of Disability Living Allowance this scheme can help you buy or lease a car, wheelchair or electric scooter. For more details contact: Motability Car Scheme, Motability Operations, City Gate House, 22 Southwark Bridge Road, London SE1 9HB; Telephone: 0845 456 4566; Text phone: 0845 675 0009.

Richmond AID has two manual wheelchairs that are available for short-term hire (generally one to two weeks). Telephone 020 8831 6070, Monday–Friday, 11am–4pm, to book. There is no charge for this service but there is a suggested donation of £5 minimum.