BBME CFS Support Group

Bury/Bolton ME/CFS Support Group Application for funding during 2015

Introduction and why we’re applying?

Last year our group successfully applied for a grant from Festival Medical Services (FMS) to pay for the production costs of our monthly newsletter. This money was very much appreciated, and we’re thankful for receiving your help.

Our support group exists to help Myalgic Encephalopathy /Chronic Fatigue Syndrome (ME/CFS) sufferers by sharing information, providing services and working with local NHS trusts so they can provide effective care and treatment. One activity is the production our monthly newsletter, which will cost £1692.00* for 2015. We’d like to ask Festival Medical Services to fund this for 1 year plus an extra £234.00 for the production of leaflets for GP’s surgeries and welcome packs for new members. The total application is for £1926.00.

* See Newsletter Production Costs on page 2 to see why the cost has risen compared to 2014

Benefits of having a newsletter

I’ve used members’ comments to illustrate how useful the newsletter has been:

  • “… it keeps members up to date on Dept. of Work and Pensions’ issues, support in place, the yoga, speakers at the group to help the knowledge and awareness of the illness. In general it’s a huge sense of support for the group keeping us informed of relevant issues and little things that may help.”
  • “It stops the isolation from the lack of mobility for many people. It keeps us up to date with the valiant important information about our illness and what is happening in the outside world to find out some sort of cure.”
  • “Handy hints on services available.”
  • “As far as I am aware, the only one that is monthly, so is more up to date that the quarterly ones. We can keep informed on things like changed to benefits, Motability scheme, events they may be interested in, etc. We advertised Breathworks course in newsletter and sold out in two days. That was a 8wk course to help people with wellbeing”
  • “Great up to date info. Don’t feel so alone. Helps when you know things are shared and it’s not just ‘you’. Hints and interesting things too…x”
  • “You get a lot of information that u don’t know”
  • “A lot of info given x advice it’s a good read can’t fault it also good for people who carnt always make it to the meetings for giving them information x advice x”
  • “Someone found out they could have all bank charges refunded as only on benefits. Two that I know of found out about £140 electricity credit via warm home discount scheme for those on certain benefit s and never would have known otherwise. May be more.”
  • “It’s a useful reference for all the services the group offers, vital for people with memory problems.”

What is ME/CFS ?

The illness is a syndrome, which means it’s a collection of symptoms affecting different people in different ways. ME/CFS is based on prolonged exhaustion and can also include muscle pain, problems with cognitive function such as memory loss and poor concentration and other symptoms. At present there’s an estimated 250,000 UK sufferers. Although the disease affects people in different ways, many of our 150 members are unable to work and have difficulty caring for themselves and living as a healthy person would, The impact of fatigue and a lack of energy has a profound effect on our members’ lives. [More details from the NHS]

The Bury/Bolton ME/CFS Support Group – What we do

Established in 1990, the group aims to support and break the isolation experienced by sufferers in the Bury and Bolton area (NB: Some members also come from Greater Manchester). We also help to provide information and contacts as there’s no cure and lots of confusing information. The group holds 9 meetings a year, alternating between social evenings and guest speakers, who could talk on anything from care services to the local wildlife. We also arrange separate social meetings and produce a monthly newsletter. We operate a small library, run weekly Yoga sessions and have a chat group on Facebook. We distribute awareness leaflets to over 70 libraries and GPs in the Bury/Bolton/Manchester areas. Because of these services, many members say we’re a valuable life-line. The group is run by a committee of 8 volunteers who are assisted by another 6 volunteers. All volunteers are unpaid and almost all have ME/CFS, although some are carers. [See our website for more details – The group’s constitution is attached separately]

The Newsletter

The newsletter is a lifeline to members who are housebound and cannot come to our group meetings or socials. It provides relevant information from news about the latest research, local ME Clinic news, social meetings etc. and aims to be up to 12 pages each month. It also reports on the last group meeting with a detailed account of what the speaker said. The newsletter is also sent to about 40 health professionals, so circulation is about 190 and goes up over the year. Although we aim to send the newsletter electronically, approximately 100 members need a paper copy as they don’t have access to the internet. [See previous newsletters]