Links

Information and advice

  • 25% ME Group (www.25megroup.org): support Group for the severely affected;
  • Clinical Case Definition for ME/CFS (http://tinyurl.com/d2ab7): by the Canadian Expert Consensus Panel. Your doctor may find it helpful. There's a short version to download free, and a longer one to buy;
  • Disability Alliance (www.disabilityalliance.org): factsheets, benefits advice, telephone advice etc;
  • Disability Advice and Information Network (www.dialuk.org.uk): a source of information about local disability organisations, charities, etc...
  • Continence Foundation Helpline (www.continence-foundation.org.uk}: confidential continence advice service
  • Incontact (http://tinyurl.com/zfrsg): Information sheets about continence aids and issues.
  • After 16 (www.after16.org.uk): Lots of useful information for young people.

Back to the top

Independent living advice

  • National Centre for Independent Living (http://www.ncil.org.uk/): essential site for anyone recruiting and employing their own staff. Gives information about Centres for Independent Living across Britain, who assist with many aspects of recruiting and training personal care assistants;
  • ME/CFS Social Services Users Group (http://tinyurl.com/84ckv): an information and support site for ME/CFS sufferers, who receive SWD Care or Direct Payments. It's time consuming to register and join, but worth the effort;
  • Independent Living Institute (www.independentliving.org): good library of on-line articles about Disability, Independence issues, Empowerment, etc...
  • Leeds University Disability Studies (http://tinyurl.com/b39z2): interesting academic site about the disability movement, with links to other organisations;
  • Job Centre Plus (http://www.jobcentreplus.gov.uk): the Job Centre will advertise jobs free, and can offer advice and other types of help if you need to employ people to help you.

Back to the top

Equipment

  • Disabled Living Centres (www.dlcc.org.uk): very important centres around Britain, where you can see an Occupational Therapist for advice, and try out disability equipment. If you can't attend a centre, they will sent information out to you;
  • Disabled Living Foundation (www.dlf.org.uk/factsheets): factsheets and advice over the phone about disability equipment etc. Phone 0845 130 9177 (10-1 Mon-Fri);
  • Occupational Therapy and disability equipment suppliers (http://tinyurl.com/zs52j): links to suppliers of disability equipment;
  • Incontact (http://tinyurl.com/kveu9): factsheets about continence aids;
  • Tripscope (www.tripscope.org.uk): very good source of information on local and national mobility information - borrowing/hiring wheelchairs, Shopmobility, etc...
  • Wheelchair SOS (www.wheelchair-sos.co.uk): lots of useful information about disability equipment etc.

Back to the top

Carers' groups

  • Department of Health Carer's Site (www.carers.gov.uk): containing useful information about benefits, etc...
  • Brightfield Carer's Group (http://brightfield.org.uk/living/): offers insights into different issues around ill-health and recovery;
  • Carers Together (www.carerstogether.co.uk): an ME/CFS Carer's Group;
  • CFS Caregivers (http://wwcoco.com/cfs-care/): an email discussion group for carers of people with chronic illnesses. A place to find information, support, contacts and humour.

Back to the top

Books

Back to the top

Other useful links

  • Directory of Nursing Agencies (www.nursing-list.com): details of British agencies which offer care and nursing;
  • Wiltshire Farm Foods (www.wiltshirefarmfoods.co.uk) a Company delivering ready-made meals to cook from frozen. Cater for some special diets.

Back to the top