FREQUENTLY ASKED QUESTIONS
WHAT IS ME?
Myalgic Encephalomyelitis (ME) (also diagnosed as Chronic Fatigue Syndrome — CFS) can affect anyone, at any age, and from any ethnic group.
A quarter of a million people (25% of whom are children) are estimated to have ME in the UK;
25% of them are so severely affected they are housebound or bed-bound; and 77% of adults have lost their job!
Common symptoms (to name but a few) include severe exhaustion, un-refreshing sleep, poor concentration, headaches, muscle pain and digestive issues.
People with ME still face ignorance and prejudice.
There is no cure and more biomedical research is needed to find effective treatments.
Our entire group website is accessible to anyone who visits it, with no member-only section. Its main function is to allow someone who has ME, or thinks they have ME, plus their friends, family, and carers to find us, find out about us and ME and to contact us. It also contains information about ME for health, education and social care professionals who may have clients with ME. No members’ photos, names or contact details are given on the website without their express permission.
Local Giving Website
Our Facebook page is similarly open to everyone in the UK and anyone can post on the page. There are four page administrators who can, if necessary, remove posts or shut down the page. The main function of the Facebook page is to provide information about ME to members and to other interested people who may not have joined the Group.
Our Twitter account @randkmegroup is used to raise awareness about ME and publicise the Group. There is a Twitter feed to our website including retweets of current ME news.
The group membership database is maintained on the computer of the group Membership Secretary. It is never disclosed or sent to third parties, nor are third parties allowed to access it. Only the Chair, Treasurer, and two other Committee members are allowed to access it/keep copies on their computers and access is encrypted for extra security.
New members are asked if they would like to join our Google email group. This is administered by our membership secretary and access is restricted to those members who have chosen to join it. There are Group email network guidelines on using the Group which are posted up from time to time as a reminder. There is no public access to this group.
Other Email Contact
At regular intervals between newsletters, an email is sent to all members who have given us an email address with items of information about group events and items of general ME interest. These emails are sent as blind copies so that email addresses are not revealed.
Our newsletter is published four times a year and sent to members by email (as blind copies) or by post if the member is not online or specifically requests this. It is the main means of contact with the Group for many members who are not well enough to attend meetings or participate in the email network etc. The newsletter is also distributed by email to other ME support groups in exchange for their newsletters to pool material with the proviso that nothing is reused without permission and that the newsletter is not forwarded or posted online. Nevertheless any member who contributes to the newsletter is specifically asked whether they are happy for their name, contact details, or photo to be included or would prefer to write anonymously, as there is a risk that the newsletter will be distributed electronically beyond the membership.