This code has been written to inform members of Network MESH (West London) about how the group is run and the rules by which the trustees abide in running it. It has been prompted especially by the impact of the internet on the spread of information, and the need to exercise due care in regard to personal details in an increasingly digital world.
1. The 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, to find us, find out about us and to contact us. Joining the group is by post or online. Payment of the membership fee (plus any donation) is by cheque in the post to the membership secretary. Joiners can also print out the form on the website and send it in the post to the membership secretary. Those who do not have printer can contact the chair who will send a membership form in the post. (Equally, those who are not on the internet can ring the chair who will put a membership form in the post to them).
2. Contact details on the website are those of the group officers who have agreed to have them there. No contact details of members (name, phone number, email address) are to be placed on the website unless express permission to do this has been obtained from them.
3. The current issue of the group newsletter, Outreach, is not available for view on the website, nor are any past copies. Website visitors are told that the group newsletter is only available to members, to whom it is sent directly every quarter, either by post or as an email attachment.
1. 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 trustees of Network MESH are permitted to access the database and to keep copies on their computer, as and when they require it for the running of the group.
2. On the membership joining form, new members are asked if they wish to be on the Public or the Private list. Roughly two-thirds of members choose to be on the Public list. From time to time, the Public list is sent out with the newsletter, to allow those who are on it to see the contact details of other members who are on it, so facilitating communication between members. The Private list is never circulated to members.
3. The chair maintains a group email list, for circulating items of information about group events and items of general ME interest between newsletters. About two-thirds of the group have an email address. The group email list is similarly divided into Public and Private sections. When an email is sent out it goes to everyone whose email we have but those on the Private list are “blind copied” so that no one receiving the email can see their email address. The email addresses of those on the Public list are visible to all.
1. Outreach is published quarterly. It is sent to members by post or, if they so choose, as a PDF attachment to their email address. It contains information on forthcoming group events, items of local interest to people with ME, national news of interest to people with ME, and contributions from members (which need not be ME-related). In practice, many news items of interest to people with ME are both local and national. Members are free to contribute news items that they have gleaned online or from reading in a publication that they think will interest other members. These can reflect different views. From time to time, the group may express a view in the newsletter.
2. We need to bear in mind that the majority of group members do not belong to a national ME charity and therefore do not receive news on ME developments via the national charity member magazines. Similarly, one-third of members do not have internet access and, even for those who do have a computer, they are often restricted in what their illness allows them to do on the Web to keep up with developments.
3. Cost pressures mean that it is necessary to encourage members to receive Outreach by email. There can, of course, be no control over what members do with the PDF once they receive it. Currently, 22 paper copies are distributed to a range of people outside Network MESH: 11 other ME groups, 4 national ME charities, the Hillingdon ME clinic, voluntary agencies etc.
4. Anyone who writes for Outreach does so on the understanding that there is a small risk that their article is distributed electronically beyond the membership. If, for reasons of their own, this is a concern to them they are free to write anonymously, either just using their first name or as “A member”.
5. The editor of Outreach receives contributions (either electronically or by post) and organises the layout of the newsletter as she receives them. She has editorial control but will normally consult the chair before making a decision. If there is any disagreement or controversy associated with an item the chair will discuss this with the other trustees of Network MESH who will reach a conclusion. The chair “signs off” the final draft of the newsletter before it goes to the printers.
6. To reduce the workload of newsletter editors, groups within ME London are able to make use of a central database of recent articles on a Dropbox website (“MELbox”) set up specifically for this purpose. Participants must be invited in. They can upload articles to the site and use any that are on there for their own newsletter. It is not a public site and is only accessible to those who have been invited in.
Welcome to our newly refreshed website!
We decided to update the Network MESH website and make its maintenance as easy and user-friendly as possible. The most popular section of the old website was the public area, with the Members’ Only section receiving relatively little traffic. The maintenance of the user logins was nevertheless a significant amount of work so for the moment at least, we have decided to have a fully public website with no member logins.
We have also changed the system we use to maintain the website from Joomla to WordPress. We hope that this will be a more easy and intuitive system to use, a particularly important consideration when all the work is being done with people with ME. I have used WordPress for my own blogs, so I know it is a user-friendly system that allows you to create great looking websites.
I hope you like the new website, and if you have any content or links that you would like to share with other people with ME, please contact me (firstname.lastname@example.org)
Editor of the website
At our annual general meeting in October 2012 Dr. Charles Shepherd, Medical Adviser to the ME Association gave a talk about ME. As many of you will know, he has M.E. himself and has been a champion of biomedical research into ME and a better deal for people with M.E. from the benefit system for many years. He is active on several M.E. fronts and was very well placed to give us an update on key developments in the M.E. world.
As many of our members were too ill to travel to the meeting, a kind member provided a transcript of the talk.
We currently have 125 members. Financially, things looked difficult at the beginning of our financial year in August and we decided we needed to devote a lot of effort to getting in subscriptions and donations in early 2012 to reduce the constant outflow of cash. Then, out of the blue, we received a large sum of money from a recently joined member, for which we are eternally grateful. There are so few of us running the group that trying to get in subs and donations is a major task and not something we were looking forward to. This generous donation has given us much-needed breathing space. The accounts show we ended up the year with £2,900 more than we started. During the year we spent £2,100 but we managed to bring in £500 from the sale of cards, subs from new members and donations. A major problem for us, and for other groups, is the sharp rise in the cost of postage, which will hit us hard this year. The only way we can offset this is by persuading more members to receive Outreach as an email attachment. If anybody wants to see the accounts with all the detail, I’m happy to give them a copy. I have also filed them with the Charity Commission so the totals are on the Charity Commission website for anyone to see.
Our biggest single cost item is the newsletter. After two successful years, Jean Higgins decided to step down as editor and we thank her for all her efforts. No one within the membership volunteered to take over but, thankfully, we eventually found Cathy Stillman-Lowe who does not have M.E. (but does have another long-term fluctuating illness). Cathy knows a lot about M.E., has edited a local group newsletter before, and has approached the task with initiative and enthusiasm. Many group members are unable to get to meetings and events, and we know from surveys we’ve done over the years that they regard Outreach as a lifeline. Also we shouldn’t forget the crucial behind-the-scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.
Our group website has a public area and a private area that only members can access. Heidi does a valuable job looking after it and has also set up a group Facebook page. Increasingly, new members find us via the internet.
We have held fewer social events than we would have liked this year. However, those that we do hold are clearly appreciated by those members who are well enough to come. The Summer Party went well, as did the party in August at Maggie Fear’s flat. Cath Ross and Colin continue to organise a regular coffee meeting in Chiswick.
We also run a fund for members who need small sums for financial assistance. Janet Battams, the administrator of THAT Fund, as we call it, reports:
“Since the last report, when the Fund was suspended due to financial constraints, we have had a generous donation and are able to offer grants again. During this financial year two grants have been issued and one application for a grant is under consideration at present. We are not inundated with applications and are always willing to consider any queries from members who think a grant would help them.”
We met our local ME/CFS clinic at Hillingdon in December for a useful discussion. We try to keep in contact with them on a regular basis.
Every six months, I chair a meeting of several London ME support groups, called ME London, which we all find valuable in terms of exchanging ideas and talking about issues of mutual interest.
Finally, a few of us do a lot of work to keep this group going and we would welcome help with the running of the group from any member who feels able to contribute.
If anyone has any questions we will do our best to answer them.
M.E. (Myalgic Encephalomyelitis), which is also known as Chronic Fatigue Syndrome or Post-Viral Fatigue Syndrome, is a chronic, disabling illness, which can affect both adults and children. It is currently estimated that there are over 250,000 sufferers throughout the U.K., and around 25,000 of these are children.
After many years of controversy surrounding this illness, the World Health Organisation now classifies M.E. as a neurological illness. It is commonly triggered by a viral infection and anyone, regardless of age, sex or ethnic background can develop the illness.
The symptoms vary from person to person, but the most common ones are:
– Profound, lasting fatigue, which does not improve with rest
– Severe joint and muscle pain
– Persistent headaches
– Impaired memory and concentration
– Sore throat, and/or enlarged lymph glands
– Abdominal pain and/or nausea
– Disturbed sleep pattern
– Poor temperature regulation
– Sensitivity to light and noise
There is no known cure for M.E., although an early diagnosis, adequate rest in the early stages and effective advice on the management of the illness can significantly improve the chances of a full recovery. M.E. can last between a few months and many years. Only twenty percent of sufferers are likely to make a full recovery in two to four years. Of the remaining group, around 60% improve significantly over time, whilst 20% become chronically and severely disabled.
Many people affected by ME are unable to work, having had to give up after the onset of the illness, and become reliant on whatever state benefits they can claim. Sadly, due to the ongoing misunderstanding surrounding the illness, many sufferers do not receive the level of benefits they are entitled to, and endure financial hardship as a result.
So as to make it easy for anyone who is ill to find us, we use the terms M.E., Chronic Fatigue Syndrome, CFS, CFS/ME and ME/CFS interchangeably,