reMEmber is a registered charity which helps people who have ME – ME stands for Myalgic Encephalopathy, also known as Chronic Fatigue Syndrome, ME is a long-term illness. The main symptoms are muscle fatigue and weakness, memory and eyesight problems, sleep problems and irritable bowel – as of yet, there is no cure.
When Janice Kent of Hurstpierpoint was diagnosed with ME, she found there was no service for this illness south of London – even though statistics show that about one person in 200 suffers from it. In 1999 Janice formed reMEmber with the aim of getting a service for M.E patients in Sussex.
reMEmber’s focus has always been on local adults and children who have the disease, but they soon attracted interest from patients across Sussex and beyond and today the charity helps people from Crawley to Burgess Hill and beyond.
They played a role in getting the Sussex-Wide CFS/ME Service established within the NHS in Haywards Heath in 2005. They are now campaigning for a better, expanded service, and for better provision for ME patients nationwide.
One of the functions of reMEmber is that runs self-management classes to help ME sufferers manage their lives in a more realistic way when they have a long term illness. These courses are run locally and usually with groups of 8 to 12 people, one morning a week for six weeks.
The charity gives patients and carers help and advice and supports research into the illness. They hold social and fund-raising events and produce a lively and informative newsletter.
reMEmber has raised money for a number of causes including Dr Amolak Bansal’s research into what leads to the disordered immune systems of people who have ME, and his guidance to doctors about the illness which has been recently published as an online open access document (www.biomedcentral.com/1471-2296/17/81).
Dr Bansal is a consultant immunologist at Epsom Hospital in Surrey, and probably the country’s leading expert on CFS/ME. Despite being ‘out of borough’, you can ask your doctor for a referral to him and his team of specialists.
Janice Kent from reMEmber said, “Usain Bolt, who achieved the “triple triple” at the Rio Olympics, has donated to reMEmber a T-shirt which he has autographed. We intend to auction the T-shirt to raise further funds to help CFS/ME sufferers.’
“We also have a concert called “Songs of Love, Lust and Longing” with the Lou Beckerman Quintet on 12 November and an evening with the Rev Peter Owen Jones, the Vicar of Firle, author and TV presenter, on February 3 2017 – both these events will be at Danny House, Hurstpierpoint.”
For more information, contact Janice Kent at reMEmber, PO Box 1647, Hassocks, West Sussex, BN6 9GQ, telephone: 01273 831733, email: email@example.com, or visit ww.remembercfs.org.uk
By Rachel Whitlam