Information and Help for People with ME / Campaigns for Biomedical Research into ME / Other ME Support Groups in/near London / London NHS Hospital Departments / Benefits and Welfare Rights / Debt Advice / If in Distress|
Information and Help for People with ME
The ME Association http://www.meassociation.org.uk/|
Provide information, support and practical advice for people affected by ME/CFS, their families and their carers. They also fund research and offer education and training. Their website carries a list of support groups in the UK. Their helpline, ME Connect (0844 576 5326), is open 10-12am, 2-4 and 7-9 pm every day of the year and offers support to anyone with ME/CFS and their carers.
Action for ME http://www.actionforme.org.uk/
Provide information and support to people affected by ME/CFS and campaign for more research and for better treatments and services. They also offer a welfare rights line.
The 25% ME Group http://www.25megroup.org/
Support for those who have the most severe form of ME/CFS, including the housebound, bedbound, and wheelchair users, as well as their carers.
Association of Young People with ME http://www.ayme.org.uk/
Support for children and young people up to the age of 26, their parents, carers and health professionals.
Tymes Trust http://www.tymestrust.org/
Service for children and young people with ME/CFS and their families. They work with doctors, teachers and other specialists.
Overton Studios Trust http://www.ostrust.co.uk/
A Christian charity providing online support for people with ME.
ME/CFS Parents http://www.mecfsparents.org.uk/
For parents or parents-to-be who suffer from ME.
BRAME (Blue Ribbon for Awareness of ME) http://www.brame.org/
Phoenix Rising http://phoenixrising.me
A website containing a large ME/CFS forum and an extensive database of articles and posts on ME/CFS. They are currently engaged in several online projects designed to enhance patients' treatment and physician options, reduce their isolation, and empower them.
Health Rising http://www.cortjohnson.org/
An online source of information about ME and fibromyalgia and about treatments for the conditions.
Designed to be an easy way to start finding out about ME, to find local support groups, and to introduce people to some of the online forums and organisations. It also has links for people with fibromyalgia.
Campaigns for Biomedical Research into ME
ME Research UK http://www.meresearch.org.uk/|
Have as their principal aim the funding and commissioning of biomedical research into ME/CFS. They also aim to raise awareness of the illness and to provide high quality information about all aspects of it.
Invest in ME http://www.investinme.org/
Campaign for funding and biomedical research to bring about an understanding of the causes, effects and epidemiology of ME.
Other ME Support Groups in/near London
Network MESH A self-help group serving west London. http://www.networkmeshwl.org.uk/|
Richmond and Kingston ME group http://www.richmondandkingstonmegroup.org.uk/
North London Network http://www.nlmenetwork.org.uk/
Sussex & Kent ME/CFS Society http://www.measussex.org.uk/
For fibromyalgia support groups in Greater London see http://www.ukfibromyalgia.com/fm-support-groups/groups-greater-london.html
London NHS Hospital Departments
King's College London: Chronic Fatigue Research and Treatment Unit http://www.kcl.ac.uk/innovation/groups/projects/cfs/index.aspx Their routine treatment is cognitive behaviour therapy; also graded exercise therapy.|
CFS/ME Service at St Bartholomew's Hospital http://www.eastlondon.nhs.uk/Services/Other-Services/Chronic-Fatigue-Syndrome-ME/CFSME-Service.aspx
A multidisciplinary service for patients with CFS/ME.
Guy's and St Thomas' Fibromyalgia Service http://www.guysandstthomas.nhs.uk/our-services/rheumatology/special/fibromyalgia/overview.aspx
Benefits and Welfare Rights
Citizens Advice offer free advice face-to-face and by phone. They help with debt, benefits, employment, discrimination and much more. You can find your local bureau from their website at http://www.adviceguide.org.uk/ (See our Welfare Benefits section for offices in south east London.) Their online benefits advice is at http://www.adviceguide.org.uk/england/benefits_e.htm|
Benefits and Work http://www.benefitsandwork.co.uk/ produce extensive online guides to claiming illness/disability-related benefits. They also offer a newsletter and forum.
Disability Rights UK http://www.disabilityrights.org aim to promote disabled people's control, independence and equality, and to break the link between disability and poverty. They produce an annual guide to benefits: the Disability Rights Handbook, and also factsheets on benefits.
Child Poverty Action Group http://www.cpag.org.uk work to end poverty among children, young people and their families. They produce an annual guide to benefits: the Welfare Benefits and Tax Credit Handbook. Their information about local welfare assistance schemes for people in urgent need following an emergency is at http://www.cpag.org.uk/lwas?dm_i=5MH,2DA3L,8RNEXY,8LJZ5,1
Action for ME http://www.actionforme.org.uk/ offer a welfare rights line and leaflets and guides to help with claims.
The ME Association http://www.meassociation.org.uk/ produce guides to claiming benefits.
Benefits calculators help you work out what you're entitled to:
A closed Facebook group provides advice and documents on a wide range of benefit-related issues for people with ME: http://www.facebook.com/groups/278260135547189/
Rightsnet http://www.rightsnet.org.uk/ is a site for welfare rights advisers. They have a discussion forum on a wide range of benefits. Their site carries links to key websites that hold welfare benefit and tax credit related legislation, official guidance, caselaw and other reference materials http://www.rightsnet.org.uk/toolkit
National Debtline https://www.nationaldebtline.org/EW/Pages/default.aspx A free independent telephone and online service for people who are in debt.|
StepChange Debt Charity http://www.stepchange.org/ Free advice to help with debt problems or more general budgeting.
If in Distress
The Samaritans phoneline operates 24 hours a day, every day of the year: 08457 90 90 90. Or you can email the Samaritans: firstname.lastname@example.org|
ME Connect, a phoneline provided by the ME Association, is open 10-12 am, 2-4 pm and 7-9 pm every day of the year and offers support to anyone with ME/CFS and their carers: 0844 576 5326. Cost of the call is 7p per minute plus your phone company's access charge.