Selected Links, mailing lists and support organisations

(UK and Worldwide)


Contents

UK Sites

European Sites

US Sites

Canada

Australia and New Zealand

UK Websites covering Chemical Sensitivity and Allergies

UK Disability Organisations

UK Websites covering other disabilities and health problems

Contacting your Member of Parliament

Send me your links


United Kingdom

25% ME Group "Support for severely affected ME sufferers, the 25% of sufferers who remain long term ill and disabled by the disease."


Dr Abhijit Chaudhuri DM MD MRCP(UK) MBBS

Diplomate of National Board (Medicine & Neurology)
Clinical Senior Lecturer in Neurology
University of Glasgow
Institute of Neurological Sciences

Chronic Fatigue Group - Section of Neurology - Southern General Hospital, Glasgow.

e-mail ac54p@udcf.gla.ac.uk Tel. 0141 201 2492


Action for ME (including what used to be known as Westcare UK)

A national charity campaigning to improve the lives of people with ME in the UK.

Warning: This charity has (in the view of many) become a Department of Health supported "lifestyle" management charity that heavily promotes the use of Cognitive Behavioural Therapy, Graded Exercise and not a lot else other than alternative therapies. Action for ME claims to give patients "an informed choice".

It is believed that Action for ME has an active behind the scenes association with a small group of psychiatrists known as the "Wessely School" who themselves selectively express the view that ME/CFS is a mental and behavioural disorder also referred to as a Functional (psycho) Somatic Syndrome.

The Activist's Handbook A guide to activism - "This is your world. You can do something to change it."

The All Work Test Calculator - If you are applying for Incapacity Benefit you need to see this website. Many thanks to the Leeds and District ME Group for creating this benefit's calculator.

Axford's Abode - Information on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

Blue Ribbon for the Awareness of ME "Publicises and creates awareness of ME and its consequences."

Case History Research on Myalgic Encephalomyelitis "A registered charity set up to identify as many severely disabled ME sufferers as possible in the UK and to monitor the course of their illness over a period of ten years."

CASH

Set up by Monica Dale to help health workers obtain their occupational pension through ill-health with ME/CFS. She is now helping people in other areas of employment who are having a problem obtaining a pension with a diagnosis of ME/CFS.

Tel. 01983 299033

Daytime: Wed-Fri, 9am - 1pm
Evening: Tue-Fri, 6 - 8pm 01983 299033

Chronic Fatigue Syndrome (ME) and Fibromyalgia "A discussion of strategies to deal with them."

ForT The Campaign to fight for the truth regarding M.E. - A Better Deal For M.E. People

Kickback We are a group of ME sufferers, mainly in west and south west London but not exclusively so, and welcome members from any location.

Malcolm Hooper Online - Sunderland University

ME Association "Aiming to support, to help, to inform and to empower all those whose lives are affected by ME/CFS."

ME Chat an e-mail support list for ME sufferers and their families in the UK

Meach Trust "Provides specialised residential accommodation and care for patients suffering from severe and chronic ME."

Medical Research Council "Following publication of the CFS/ME Working Group Report to the Chief Medical Officer in January 2002, the MRC was asked by the Department of Health to develop a broad strategy for advancing biomedical and health services research on CFS/ME."

Read the MRC draft research strategy report here and the response from Professor Malcolm Hooper here.

MEND-UK "Frank and open discussion for people with ME and their carers who want a group where messages are not subjected to pre moderation and archives for members only. The main purpose of this group is to discuss the issues that are being censored by the group run by the 3 main UK ME charities, namely the MEA, AfME and AYME."

MERGE The Myalgic Encephalomyelitis Research Group for Education and Support is a registered charity based in Perth, Scotland. Our principal aim is to commission and fund scientific investigation into the causes, consequences, and treatment of myalgic encephalomyelitis (ME) and related illnesses.

MERSC Welcome to the M.E.R.S.C. Web Site . . . supporting research into Myalgic Encephalomyelitis-e.mail-About M.E.R.S.C.

ME Support "An extensive site covering many aspects of ME and some non-ME subjects."

Overton Studios Trust "A mission is to help sufferers to manage their condition more effectively and finally to bring it under their control."

RiME Research into ME - A UK Petition - A letter to the the supporters of RiME can be viewed here. Sample letters handed to the MRC can be read here. A report of the meeting between the MRC and RiME can be read here.

The Samaritans "Do you need someone to talk to?"

"Samaritans' mission

Samaritans is available 24 hours a day to provide confidential emotional support for people who are experiencing feelings of distress or despair, including those which may lead to suicide."

Phone 08457 90 90 90 e-mail jo@samaritans.org

Dr Sarah Myhill Online Upper Weston, Llangunllo, Knighton, Powys, Wales LD7 1SL, UK Tel. Tel 01547 550331 (Dr Myhill is by all accounts one of the best GP's with an interest in Myalgic Encephalomyelitis and other frontier of science diseases. e-mail smyhill@globalnet.co.uk

Satori-5 ME/CFS, PVFS/CFIDS, MCS/TILT/CI, HRS/EI, Alternative Health, and Networking Resources. Scotland, UK

Scot ME "A website set up with the aim of helping circulate Scottish and national ME information and news."

UK People Support CFS-ME We are a friendly self-help group providing support, information and a forum for discussion for people who have CFS/ME and their carers (mainly in the UK). New posters are always welcome, and are advised to read the Charter and Posting Tips before posting.

Young Action Online / Tymes Trust "A concentrated resource of solid information from creditable sources for young people with ME, their families and professionals."

ZOE WILLIAMS' TOP TIPS - an excellent website from Zoe Williams covering more topics than you could shake a stick at. :o)


Europe

Ad vitam Czech Republic CFS association (in Czech).

Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie French CFS association (in French).

Associazione Italiana Sindrome da Stanchezza
Cronica
Italian CFS association (in Italian).

CFS Information International "Professionally selected news, information and research articles on ME/CFS and FM."

Danish ME/CFS Association "ME/CFS Foreningen is the Danish ME/CFS Association. It was founded in 1992 and counts almost 500 members today. The purpose of the association is to provide factual information about ME/CFS to patients, families, health care professionals, and social authorities, and to offer support for patients and their families. The association offers: A magazine published 4 times a year; Research and coping information about ME/CFS; Information for doctors; Local support groups; Patient advisors and diet advisor; Legal advisors; and a child & youth group."

Fatigatio eV German ME/CFS association (in German).

Irish ME Trust "Provides information, counselling and a referral service for supporters and carers."

ME Fonds Dutch CFS organisation (in Dutch).

ME Platform Dutch CFS organisation (in Dutch).

ME-NET At this Dutch web site, you will find information on "Myalgic Encephalomyelitis" (ME) / "Chronic Fatigue Syndrome" (CFS) / "Chronic Fatigue and Immune Dysfunction Syndrome" (CFIDS).


United States of America

About.com Information on CFS and fibromyalgia.

American Association for Chronic Fatigue Syndrome

The American Association for Chronic Fatigue Syndrome (AACFS) is a non-profit organization of research scientists, physicians, licensed medical healthcare professionals, and other individuals and institutions interested in promoting the stimulation, coordination, and exchange of ideas for CFS research and patient care as well as periodic reviews of current clinical, research and treatment ideas on CFS for the benefit of CFS patients and others.

Beat CFS and FMS "Advanced techniques For overcoming CFS, FMS and GWS."

Centers for Disease Control and Prevention This web site offers information about chronic fatigue syndrome (CFS) and its diagnosis and treatment.

CFIDS Association of America "The nation's leading charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome."

CFIDS/ME Information Page Information and discussion about CFIDS and ME.

CFS-News - This web page is provided by Roger Burns, the publisher of CFS-NEWS.

CFSResearch.org "Offers a large collection of free research articles on Chronic Fatigue Syndrome, Mycoplasma, Chlamydia and related disorders."

Cheney Clinic Information Services Welcome to the Cheney Clinic Information Service or CCIS, an Internet accessible information service with current information on research, diagnosis and management of Chronic Fatigue Syndrome (CFS).

Chronic Fatigue Pen Pal Alliance "A free, international pen pal program for Chronic Fatigue Syndrome, ME and Fibromyalgia sufferers of all ages, as well as their families and caregivers."

Chronic Syndrome Support Association Founded in order to educate the general population and healthcare professionals about Chronic Immunological and Neurological Disorders.

Co-cure "Co-operate and Communicate for a Cure. A mailing list established with the goal of furthering co-operative efforts towards finding the cure for CFS and FM."

dePaul University Home of Dr Leonard Jason and the Center for Community Research

Listening to CFIDS "The voices of persons with chronic fatigue and immune dysfunction syndrome."

Medline The world's most comprehensive source of life sciences and biomedical bibliographic information, with nearly eleven million records.

Mothers Against Myalgic Encephalomyelitis (MAME, Inc.) "Founded in 1999 as a vehicle for promoting awareness and education about Myalgic Encephalomyelitis, enlisting the support of well family and community members through volunteerism. The president and founder, Jean Harrison, presides over a newly reconstituted board comprised of both patients and non-patients." e-mail MAME here

National CFIDS Foundation "Helps fund medical research into Chronic Fatigue Immune Dysfunction Syndrome and related illnesses."

National Institute of Allergy and Infectious Diseases - Information relating to Chronic Fatigue Syndrome

PubMed A service of the National Library of Medicine, provides access to over 12 million MEDLINE citations back to the mid-1960's and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.

R.E.S.C.I.N.D. - Repeal Existing Stereotypes about
Chronic, Immunological and Neurological Diseases. Founder: Thomas M. Hennessy, Jr


Canada

National ME/FM Network "The National ME/FM Action Network is a Canadian registered, charitable, non-profit organization dealing with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/FM)--offering support, advocacy, education and research into the many, varied, anomalies connected with these illnesses."

Nightingale Research Foundation "A charitable foundation to conduct and assist research into the cause and cure of ME/CFS and to serve as an educational institution."


Australia and New Zealand

Alison Hunter Memorial Foundation "For research into ME/CFS."

ANZMES Australian and New Zealand CFS Association.

Canberra Fibromyalgia and Chronic Fatigue Syndrome Pages Information site from Canberra.

ME/CFS Society of New South Wales Information and advice.

ME/CFS Society of Queensland "Provides support, information and practical assistance to people affected by ME/CFS/FM."

ME/CFS Society of South Australia "Aims to improve the quality of life and health management of people with ME/CFS, whilst supporting community education and research initiatives."

ME/CFS Society of Victoria "A non-profit charitable organisation dedicated to serving the CFS community in Victoria and Tasmania."


UK websites and addresses relating to

Chemical Sensitivities and Allergies

 

ACTION AGAINST ALLERGY
Po Box 278, Twickenham, TW1 4QQ
020 8892 2711

Leaflets and information on where specialist help can be obtained.

BUILDINGS INVESTIGATIONS LTD
01305 837223

Check homes for chemical levels.

BRITISH ALLERGY FOUNDATION/ALLERGY UK

Deepdene House, 30 Bellgrove Road, Welling, Kent DA16 3BY 020 8303 8583

BRITISH SOCIETY FOR ALLERGY, ENVIRONMENTAL AND NUTRITIONAL MEDICINE
PO Box 7, Knighton, Powys, LD7 1WT
01547 550378

List of doctors who specialise in environmental allergy.

CHEMICAL SURVIVORS' FOUNDATION Helping people with chemical sensitivity and chronic fatigue conditions in Scotland and the UK.

Address: PO Box 2, Acharacle PH36 4YE, Scotland.

e-mail admin@chemical-survivors.com

National rate phone & fax service 0871 2422638.

FOOD AND CHEMICAL ALLERGY ASSOCIATION
27 Ferringham Lane, Ferring, West Sussex, BN12 5NB
0193 241178

PESTICIDE ACTION NETWORK
020 7274 8895


UK Disability Organisations

ABILITY ONLINE

Address: 10 GLENALMOND ROAD, WALLASEY, WIRRAL, MERSEYSIDE, UK,   CH44 0DB. TEL 0151 678 2288

BRITISH COUNCIL OF ORGANISATIONS OF DISABLED PEOPLE
Litchurch Plaza, Litchurch Lane, Derby DE24 8AA
01332 295551 e-mail general@bcodp.org.uk

Membership free for individuals. Advice service and free newsletter.

CITIZENS ADVICE BUREAU Citizens Advice is an operating name of The National Association of Citizens Advice Bureaux

"Citizens Advice - Advice that makes a difference"

Myddelton House 115-123 Pentonville Road London
N1 9LZ

Contact the CAB here.

Registered charity no: 279057 Company no: 1436945 England

DISABILITY ADVICE AND WELFARE NETWORK
64/66 Bickerstaffe Street, St Helens, Merseyside WA10 1DH
0800 073 0171

DISABILITY ALLIANCE
Universal House, 88-94 Wentworth Street E1 7SA
020 7247 8776
Advice Line: 020 7247 8763

Publishes the Disability Rights Handbook.

DIAL

The national organisation for the DIAL network, of local centres offering information and advice on any aspect of disability

Disablement Information and Advice Lines
DIAL UK, Park Lodge, St Catherine’s Hospital, Tickhill Road, Doncaster, South Yorks DN4 8QN 01302 310123

Disability Law Service

39-45 Cavell Street
London, E1 2BP
Phone: 020 7791 9800
Fax: 020 7791 9802
Email: advice@dls.org.uk

Description: Provide up-to-date, informed legal advice for people with disabilities, their families, enablers and carers and to undertake casework representing disabled people at every stage of the legal process. Areas of law covered: disability discrimination; welfare rights; community care; education; consumer & contract.

DISABILITY NOW

Website of Disability Now newspaper for those with an interest in disability; it includes news and features.

Tel: 020 7619 7323 e-mail editor@disabilitynow.org.uk

DISABILITY RIGHTS COMMISSION
7th Floor, 222 Gray’s Inn Road, WC1X 8HL
7211 4049
Helpline:0845 76 22 633

Commission to promote the rights of disabled people. Conciliation and dispute service. Helpline to contact about the Disability Discrimination Act (1995) which gives disabled people new rights in the areas of employment, education, transport, access to goods and services and buying or renting land or property.

HMSO Enquiries HMSO St.Clements House 2-16 Colegate
Norwich NR3 1BQ 0800 555777 or 01603 723011

Publishes a free book, “A Practical Guide for Disabled People”.

THE NATIONAL CENTRE FOR INDEPENDENT LIVING
250 Kennington Lane, London SE11 5RD
020 7587 1663

RADAR
Royal Association for Disability and Rehabilitation
12 City Forum, 250 City Road, London EC1V 8AF
020 7250 3222

A national organisation which works as a pressure group for people with disabilities. Information and advice service.

VODG
VOLUNTARY ORGANISATIONS DISABILITY GROUP
020 7802 8250

Federation of 22 national voluntary organisations who provide direct services to support disabled people.


UK websites and addresses

for other Medical Conditions

 

ARTHRITIS RESEARCH CAMPAIGN

Copeman House
St Mary's Court
St Mary's Gate
Chesterfield S41 7TD

Tel: 01246 558033

Involved in arthritis care, education and research.

ARTHRITIS CARE
18 Stephenson Way, London NW1 2HD
020 7380 6555
Helpline: 0808 800 4050

THE AMARANT TRUST
1st Floor, Sycamore House, 5 Sycamore Street, London EC1Y 0SR
Tel. 01293 413 000

Advice on menopause including use of HRT. Helpline with nurse specialist.

British Thyroid Foundation

PO Box 97
Clifford
Wetherby LS23 6XD
Promotes better knowledge of thyroid conditions with local support groups and advice. Send large SAE for more information.

Digestive Disorders Foundation

3 St Andrews Place
Regents Park
London NW1 4LB

Tel: 0207 486 0341

Advice and information on digestive disorders including faecial incontinence.

THE BRITISH LIVER TRUST

Central house, Central Avenue, Ransome Europark, Ipswich IP3 9QG
01473 276326

IRRITABLE BOWEL SYNDROME NETWORK

Northern General Hospital, Sheffield, S5 7AU
0114 261 1531

Helpline: 01543 492 192. To speak with specialist IBS nurse.

FIBROMYALGIA ASSOCIATION

Po Box 206, Stourbridge, West Midlands, DY9 8YL
0870 220 1232

LUPUS UK

PO Box 999, Romford, Essex RM1 3NH
Voice 01708 731251 Fax 01708 731252 or e-mail

MIGRAINE TRUST

45 Great Ormond Street, WC1N 3HZ
020 7831 4818

British Menopause Society

36 West Street
Marlow
Bucks SL7 2NB
Tel: 01628 890199

Information and research.

MENOPAUSE HELPLINE

01224 840924 (Wednesday 9am-1pm & answerphone)

Menopause Health Project

Health Promotions
181 Union Street
ABERDEEN
AB11 6BB
Telephone 01224 589901 mail@health-promotions.com

MIND

Mind is the leading mental health charity in England and Wales, and works for a better life for everyone with experience of mental distress.

MindinfoLine 08457 660 163 open Mon to Fri 9.15am-5.15pm

15 -19 Broadway, London E15 4BQ
Tel. 020 8519 2122
Fax: 020 8522 1725
Email: contact@mind.org.uk

NATIONAL BACKPAIN ASSOCIATION
16 Elmtree Road, Teddington, Middlesex TW11 8ST
020 8977 5474

NATIONAL CANDIDA SOCIETY
PO Box 151, Orpington, Kent BR5 1UJ
01689 813039

NATIONAL ENDOMETRIOSIS SOCIETY
50 Westminster Palace Gardens, Artillery Row, London SW1P 1RL
020 7222 2776

THE NATIONAL OSTEOPOROSIS SOCIETY
Po Box 10, Radstock, Bath, BA3 3YB
01761 472721

Provides practical information and support to sufferers of osteoporosis.

OSTEOPOROSIS HELPLINE

01224 840958 (Mon-Fri 10am-4pm)

PAIN CONCERN

Pain Concern,
PO Box 13256,
Haddington,
EH41 4YD,
United Kingdom Telephone (UK): 01620 822572

Listening-ear helpline (Mon to Fri 9 - 5pm, Friday evening 6.30 - 7.30pm) e-mail painconcern@btinternet.com

THE PAIN SOCIETY
9 Bedford Square, London WC1B 3RA
020 7631 8870 e-mail info@painsociety.org

RAYNAUD’S ASSOCIATION
112 Crew Road, Alsager, Cheshire ST7 2JA
01270 872 776

THE SEASONAL AFFECTIVE DISORDER ASSOCIATION
Sae to PO Box 989, Steyning, BN44 3HG

THYROID UK If you would like our Information Pack, please send a cheque for £6.00 Thyroid UK, 32 Darcy Road, St Osyth, Clacton on Sea, Essex CO16 8QF



Contacting your Member of Parliament


If you have problems with benefits, with the health service or with any other matter you may want to contact your M.P. You can write to him or her at the

House of Commons, London SW1A 0AA

You can read Hansard by surfing here

or telephone the House of Commons switchboard on

0207 219 3000

You can also fax your MP online via this website....

FaxYourMP.com - Fax Your MP For Free

....by typing in your postcode.


If you would like your organisation listed here,

please contact me.