National CFS/ME Support Groups...
...who offer help, support and information to Adults / Children / Young People / Families / Carers and Professionals.
Our thanks to all for providing information and links. We provide links to national associations as well as some websites which advocate remedies. Clwyd ME is not endorsing any products mentioned in any of the websites and would urge you to seek medical advice before experimenting with any unorthodox products.
Action for ME
Action for Me is a national uk group suitable for adult and young people
The ME Association
http://www.meassociation.org.uk
The ME Association is a national uk group suitable for adult and young people
AYME
AYME is the longest running national UK group who help
and support children and young people
Clwyd ME is a Partner Group to the Trust.
In the Autumn of 2006 Jane Colby held a virtual seminar for teachers and some of our schools took up that opportunity to increase their understanding of the illness and how it affects children. She is planning to hold another seminar later this year. Contact her for more details.
BRAME
Brame is a national uk group who help who help
adult, young people and families
CFIDS
CFIDS is an American group who help adult, young people and families
They also have a lot of information on research.
Christians with M.E.
Christians With M.E. is a site for sufferers and carers of people with Myalgic Encephalomyelitis (M.E) also known as CFS, CFIDS and PVFS. We also welcome those who suffer from a similar disease called Fibromyalgia.
CWME aims to provide a meeting place where Christian sufferers and carers can find friendship and support with the freedom to discuss all aspects of their health, life and faith.
Our medium of support is a web forum, details of which can be found through this link.
Alternatively you can contact their webmaster & administrator
Membership to CWME is free; however, we do rely on donations to keep the site running.
God Bless
Christians With M.E Team
CHROME
CHROME is a research site that follows case histories of ME sufferers.
CFS Research Foundation
This site is a research site into the causes of CFS/ME
CFS-ME
This site provides information to sufferers from Doctor David Mason Brown who has suffered in the past with CFS/ME.
The Chronic Fatigue and Immune Dysfunction Syndrome
This is a US site which provides practical tools for managing CFS and Fibromyalgia
CFS/ME (Department of Health Chief Medical Officer's Working Party)
Freedom From ME
Freedom from ME is a new site from The Optimum Health Clinic, offering a large amount of information to do with healing ME and chronic fatigue conditions. Freedom from ME has a free Interactive section, containing many mp3s full of up to date information and inspiration, as well as PDF handouts on subjects such as nutrition, stress and relaxation.
The Optimum Health Clinic is an integrative medicine clinic with a specialism in fatigue based conditions such as chronic fatigue syndrome, M.E., fibromyalgia and post-viral fatigue (for simplicity sake all referred to as M.E. within this site).
It is a clinic founded and run by ex-sufferers for those affected by these potentially devastating conditions.
The approach of the clinic has been to systematically study and research every possible helpful treatment, and pull together an integrated treatment approach that can specifically be tailored to the individual needs of each patient.
A Hummingbird's Guide to M.E.
http://www.ahummingbirdsguide.com/index.htm
A Brilliant information Centre
Because hummingbirds are tough little things with a lot more strength, bravery and determination than most people ever give them credit for - a lot like many of the people who have severe Myalgic Encephalomyelitis (M.E.) this site is dedicated to the most severely affected CFS/ME Sufferers.
Invest in ME
IiME
are an independent UK charity campaigning for bio-medical research into
Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
They have links nationwide and also internationally.
ME Research
ME Research is a Scottish group who are researching the causes of CFS/ME
They also have a section with links to both local groups as well as world wide groups
http://www.meresearch.org.uk/information/links/groups.html
Doctor Myhill
http://www.drmyhill.co.uk/index.cfm
The National M.E. Centre
http://www.nmec.org.uk/mecentre.htm
The National ME Centre is a rehabilitation clinic who take referrals from GP`s they will try to set up a suitable programme to assist the ME sufferer.
The 25 percent M.E. Group
It is estimated that 25%of all ME sufferers are affected severely and it's this fact that gave the group their name.
The 25% M.E. Group is a unique nation-wide community based voluntary group.
They have 2 members of staff paid for by the Community Fund and volunteers (most of whom are chronic ME sufferers). They provide a range of services to people affected by severe M.E. (Myalgic Encephalomyelitis), many of whom are virtually housebound and or bedbound. For further explanation look at their leaflet .
WAMES
The Welsh Association of ME Sufferers, this site offers information in either Welsh or English
War Against ME
http://groups.msn.com/WarAgainstMe/yourwebpage.msnw
You've Helped others now help M.E
This site is dedicated to
War Against M.E.
This website is run by a young woman who is an experienced sufferer of ME and her fight against and with it, Louise has made these WebPages to help others understand her experience and by letting others know her story she is ensuring that young people’s voices do not remain UNHEARD
BrainFog!!
Brainfog is an online and offline community of people
with ME/CFS from all walks of life and from all
different parts of the globe .
Further useful websites
VesPro's Chronic Fatigue Information Page
The CFS Research Foundation
Derek Enlander, M.D.
Dr Ellen Goudsmit
Dr David Smith
Dr J Teitelbaum (USA)
Dr Paul Cheney Clinic (USA)
The ME Research Group for Education and Support (MERGE)
The Nightingale Foundation (Canada)
The Samaritans
Sites for Carers
Links for Carers
- CFS Caregivers is an Internet discussion group, based on email, for caregivers of people with chronic fatigue syndrome, fibromyalgia, and other chronic illnesses. Topics include emotional support, communication, research, diagnosis and treatment, related illnesses, support mechanisms, community, and humor. Run by Greg Ross.
- CFS-Care is an online support list for carers of people with ME, run by Richard Senior.
- Carer's Together is a website full of information for people caring for those with severe ME. Run in conjunction with the 25% ME Group charity (visit also the 25% Group's Carer's Page by clicking here).
- The Government's Carer's website.
- Princess Royal Trust for Carers
- Carer's Online is a partnership website providing carers, those supporting them and others with national and local information.
- The Carers National Association publishes a free booklet entitled 'How do I get help? A carer's guide to assessments' which gives information on how to get Community Care Assessments/rights to 'Carers Assessments'/practical guide for preparing to meet with Social Workers at assessment/advice on what happens after assessment/your rights/Appeal procedures/respite care/short breaks and more. Tel: 0345 573 369 Mon-Fri 10am-midday and 2pm-4pm for a copy.
- Crossroads is the largest charity in the world providing 'in-the-home'
Chat rooms you might like to visit
International IRC channels for people with ME/CFS:
These sites are best accessed via the Undernet server.
Channel names are #cfs, #wings and #cfs-20s (for those aged 20s-30s)
and #cfs2000. For detailed instructions on how to access the
International CFS IRC channel click here. The European CFS chat room can be found on the eu.undernet.org server, channel name #cfs.
- Immunesupport.com, one of the largest ME/CFS & fibromyalgia websites and based in the USA, has its own chat room. Click here for details.
- Details of a UK ME chat room run by ME sufferer Louise Sergent can be found here.
- Other live chat options include:
MSN Messenger (which allows you to select a list of friends to alert when you're online and available for a one to one private chat) and
ICQ, including an international ICQ ME network.
Do you know of another site we should link to?
We will add more websites and information as we upgrade our site
If you know of anything you think would be useful
Please contact webquery@clwydme.net