Category Archives: What is happening in Network MESH

Annual Review 2013

Chairman’s Review of the Year (2012/13) at the AGM on 8 October 2013

We currently have 130 members.  Financially, we are in a good position. One of our members has been most generous and gave us a further sum at the end of last year. 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 look forward to. This additional donation has given us much-needed breathing space. And it means we don’t have to ask members for money each year which many find hard to give.

The accounts show we ended up our year to 31 July 2013 with £1,817 more than we started. During the year we spent £1,610 but we managed to bring in £3,427 from donations, subs from new members and the sale of cards.  A major problem for us, and for other groups, is the sharp rise in the cost of postage for the newsletter, which is our major item of expenditure. The only way we can offset this is by persuading more members to receive Outreach as an email attachment.  I’m pleased to report that our request to take Outreach electronically last May was well received.  It is interesting to note that over 70% of members are now on email, even if they can only use a computer for limited periods. We now send out almost a third of our newsletter copies to members via email which, from savings on envelopes and postage and the reduced print run, means it costs us £57 less per issue.  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 there on the Charity Commission website for anyone to see.

Cathy Stillman-Lowe is now firmly settled in as our new newsletter editor. She operates remotely so everything is done by email but that works well.  She is always looking for contributions from members – not necessarily to do with M.E. – which can be sent into her by post if you wish. Many group members are unable to get to meetings and events and we know from surveys we’ve done over the years and the feedback I get via email and phone 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.

We now have a really attractive – and informative – refreshed group website, thanks to Pamela and Heidi. New members can join online. More and more people are finding us via the Web.

We had an interesting and informative talk from Dr. Charles Shepherd of the ME Association at our AGM in October last year. Rob not only organised the technology for the talk but made 12 DVDs for those who were not able to be there. We also put a video on the website and, for those who prefer to read what he said, a transcript on the website to download.

The Summer Party at Friends Meeting House went well, as did the party in August in Maggie’s delightful garden.  Cath 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:

“The Fund has made three grants this year. Two came under the “Treatments” category and the other was a “Things” category.  The recipients were very grateful for the help received from the Fund.  Even a small grant can make a big difference in someone’s life in these times of financial constraints.  If any member would like to know more about applying for a grant please get in touch with the administrator, Janet Battams.”

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, the burden of running the group is falling on fewer and fewer shoulders, especially now that Colin leaving the trustee group. You don’t have to be trustee to help us. So please do consider if you can do something to help keep the group up and running.

Tony Golding, Chair, Network MESH (West London)

 

 

Network MESH Web/Email/Database/Newsletter Code

Introduction

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.

Website

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.

Email/Database

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.

Newsletter

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.

 

 

A New Look for Our Website

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 (editor@networkmeshwl.org.uk)

Heidi

Editor of the website

Annual Review 2012

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.

Tony Golding

the Chairman

 

Annual Review 2011

We currently have 120 members. Financially, we are still in a satisfactory position at the end of our financial year, thanks to the large anonymous donations received by the group several years ago. At 31 July just over £3100 in our two bank accounts. The problem is that the money is going down fast. Last year we used up £966 compared with around £400 the year before. We do get money in from subscriptions – around £550 in the year just ended – but reminding members and chasing them up is a huge effort for the few of us who run the group. We also get some quite large donations. But it’s not enough to staunch the outflow. So the message is we either have to get better at getting money in or find ways to cut our expenditure before we run out of funds entirely. 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. Since taking over Outreach eighteen months ago, Jean Higgins, has maintained the high standard of previous newsletters, keeping it topical and lively. We are all grateful to her for all the work she puts into it. So 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 important behind-the-scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

Our new 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. The regular local meetings (essentially down to the one in Chiswick), overseen by Cath Ross, continue to be popular for those able to get to them.

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:

“The Fund Panel has had five applications for funds this year, covering household repairs, treatments and a holiday, and paid out a total of £329 during the financial year. Members who received these grants were very appreciative of the assistance given to them. Unfortunately, due to financial constraints, the Fund is at present unable to issue grants but hopes to resume asking for applications at the end of the year”.

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.

Tony

Annual Review 2010

An annual review 2010, written by the Network MESH Chairman Tony Golding and presented in the 2010 Annual General Meeting

Summary:

  • Financially, we are still in a good position thanks to the large anonymous donation we received several years ago. But our resources are running down and we have been asking those members who can afford to pay for subscriptions
  • A new member, Jean Higgins, has volunteered to take over the editorship of our newsletter Outreach
  • Heidi and Pamela set up a new website for the group
  • In order to boost our funds, Heidi and Carolyn have been creating greetings cards for sale. The cards have been selling well.
  • The THAT Fund team were busy earlier in the year working on the information leaflet which was distributed with the summer issue of Outreach.
  •  We raised £1425 for ME Research UK in memory of Eva Sanders

Financially, we are still in a good position thanks to the large anonymous donation we received several years ago. But our resources are running down and we have been asking those members who can afford to pay for subscriptions, even though this is an exercise that involves a lot work and energy on the part of the committee. So far, 73 members have renewed their membership, contributing a much-needed £645. In brief, we had an income of just over £1200 in our financial year, which ends on 31 July, but we spent just over £1600, which means we had to dig into our capital for the difference—-a bit under £400. Our biggest expenditure is the newsletter, which comes out four times a year. 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.

Priscilla has done an excellent job since taking over as editor of the newsletter. Due to personal circumstances, however, she has had to bow out. We thank her for her vital contribution to the group. Very fortunately, a new member, Jean Higgins, volunteered to take over the editorship and was responsible for the last Outreach, which maintained the high standard of previous newsletters. So 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 important behind-the-scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

Our new website is now up and running, with a public area and a private area that only members can access. Although Heidi has moved to Kent she will continue to administer the website for us as this is something that can be done remotely. Increasingly, new members find us via the Web.

Heidi and Carolyn have also been responsible for another initiative: taking photographs and turning them into attractive blank greetings cards for members to sell to each other or to people outside the group. The surplus we make goes into group funds. The first batch of cards was a success so a second batch has been produced for sale here today and at other group events.

We have held fewer social events than we would have liked this year. The regular local meetings, overseen by Cath Ross, continue to be popular events for those able to get to them.

We also run a fund for members who need small amounts of financial assistance. Janet Battams, the new administrator of THAT Fund, as we call it, reports:

“Since the last report two grants have been agreed and cheques sent out. Both applicants appreciated the help given to them. Recently there have been two enquiries with one application returned for consideration. The Fund team were busy earlier in the year working on the information leaflet which was distributed with the summer issue of Outreach. We hope it will encourage members to apply.”

Before I finish I just want to pick out a few other things. We raised £1425 for ME Research UK in memory of Eva Sanders. 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.

Annual Review 2009

Summary:
In the Annual General Meeting in October, Tony Golding presented an annual review highlighting the most important things that went on in the group in 2009. Financially, he pointed out, we are still in a good position although our resources are gradually beginning to run down. He also praised the team behind our newsletter Outreach, with Priscilla doing an excellent job as the new editor. Janet Battams took over as the new administrator of the THAT fund. At the InvestinME conference, which several of our members attended, Catriona made an impressive and hearfelt speach. She also put in a lot of work on producing our evidence on the Hillingdon clinic for the inquiry into NHS service provision by the All-Party Parliamentary Group on ME.

Financially, we are still in a strong position thanks to the large anonymous donation we received several years ago. But our resources are running down and we will need to ask members for subscriptions next year, even though this is an exercise that involves a lot work and energy on the part of the committee. In brief, we had an income of just over £1000 in our financial year, which ends on 31 July, but we spent £2250, which means we had to dig into our capital for the difference—-roughly £1250. Our biggest expenditure is the newsletter, which comes out four times a year. If anybody wants to see the accounts, with all the detail, I’m happy to give them a copy. I also have to file them with the Charity Commission so the totals will soon appear on the Charity Commission website for anyone to see.

Priscilla has done an excellent job since taking over as editor of the newsletter and we thank her for her vital contribution to the group. So 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 important behind-the-scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

We currently have 144 members. Ninety per cent of these are located in London and around 80% in West London, broadly defined. Over 60% of our members are now on email. A small group is looking currently on how we can refresh our website and create an easy-to-use discussion group. We get a steady stream of new members. The majority of these find us through our website, so it is important that it is as good as we can make it. Keeping it up-to-date is, as ever, an issue.

We held a several successful parties through the summer. The regular local meetings, overseen by Cath Ross, continue to be popular events for those able to get to them.

We also run a fund for members who need small amounts of financial assistance. In the last two years we have given grants to 11 members, totalling £1431. I’d like to read a report I have from Janet Battams, the new administrator of THAT Fund, as we call it:

“Marion Kinn has stepped down from the position after several years and we would like to thank her for all the work she has done. We are pleased she is keeping her link with the Fund as she will act as stand-in on the Decision Panel if any of the three regular members (Carolyn Appleby, Janet Freeman and Mark Yabsley) are unavailable to consider applications.

The new administrator was introduced to the team at a meeting in July as a ‘get to know you’ and to review the Objectives and Guidelines of the Fund. One of the main ideas put forward at the July meeting was that a leaflet explaining the function of the Fund should be produced and sent out to all MESH members. This task is now in progress. The Fund has had four applications so far this year. Three of these were successful and the fourth was still under consideration at the time of writing.”

Before I finish I just want to pick out a few other highlights of the year. In May several of us attended the InvestinME conference. The group sponsored Shamsa Khan, the Occupational Therapist at the Hillingdon ME Clinic, to attend the conference. Catriona made what everyone agrees was an impressive and heartfelt speech at the Royal Society of Medicine conference in July. It has been reproduced many times, on the Net and in other group newsletters. We also have to thank Catriona for all her hard work on producing our evidence on the Hillingdon clinic for the inquiry into NHS service provision by the All-Party Parliamentary Group on ME. The inquiry was conducted over the summer and we are still waiting for the results.

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.

 

Annual Review 2008

Financially, we are still in a strong position thanks to the large anonymous donation we received several years ago. The group decided that half should be devoted to biomedical research into ME and this has been donated. We felt that the remainder should be allocated to helping members of the group. Examples are the grants awarded by THAT Fund, set up to alleviate hardship and provide small amounts of assistance to members. Also the four therapists offering their services at the AGM will be paid out of the group funds.

However, we also decided last year that members should contribute to the running costs of the group so that we did not deplete our capital resources and we resumed asking for subscriptions. As usual, this was a time and energy-absorbing exercise for me and several others on the committee, as it involved a lot of chasing of those who do not respond to requests in the newsletter or emails.
We did eventually pull in about £1000 in subscriptions and have now established a fully up-do-date membership list with 135 people on it. Interestingly, 75 of these are on email, making it easy for me to send out reminder notices and things of general interest to people with ME.

In summary, the group had revenues of £1555 in the year to 31 July 2008 and we spent £1870, which meant we had to dig into our cash resources for £315 to keep going. This is not as bad as it sounds. Actual running expenses are less than £1000 a year. The extra expenditure was on grants from THAT Fund to members and a donation to ME Research UK. The accounts are available from me if anybody wants to see them.

The newsletter continues to go out to all members under Sally’s capable editorship and is back on track, I’m pleased to say, after a short gap while Sally and Frank moved to their new flat. We shouldn’t forget the behind the scenes work done by Martin on maintaining the membership database and Colin on actually sending the copies out.

We held a successful Summer Party in July. Everyone enjoyed sitting in the Friends Meeting House garden on one of the few sunny days of the year. The regular local meetings, overseen by Cath Ross, seem to be going well, although how well varies according to the available energy of members in each locality.

The imaging project at Hammersmith Hospital was reformulated in
September last year on a less ambitious basis and brain scanning of 25 ME sufferers and 25 healthy controls is in now full swing. It is due to be completed in April next year.

Finally, with extensive help from a few members, we completed the Profile Project. All in all, we now have useful information on the wants and capabilities of 113 people in the group who responded to the telephone questionnaire. We are still working out how we can use this database to benefit members, particularly in terms of reducing isolation.

Tony Golding