Network MESH (West London) Annual General Meeting 2015 and Appointment of Committee Members

We are, as usual, holding our AGM at ECIL. It will be a purely social meeting as I don’t have the energy to organise a speaker this year. The formal business of the AGM will only take a few minutes. Do come along for MESH tea and biscuits and a chance to socialise with other MESH members.

It will be held on Tuesday 3 November 2015 at the Ealing Centre for Independent Living (ECIL), 1, Bayham Road, West Ealing, W13 0TQ at 2.30pm.

As a registered charity, Network MESH is required to hold an AGM each year to which all members are invited. At the AGM the chairman will report on our work in the last year and members will have an opportunity to vote for committee members for the following year (assuming, of course, there are more nominations than posts to be filled). Each year existing committee members must stand down but can put themselves forward again for re-election. Our constitution says we can have up to 10 committee members, with a minimum of 3. Currently we have 6. In addition, as a registered charity, we need to have some committee members to serve as officers, namely chairman, treasurer and secretary.

 
Please do consider whether you could become a committee member and help with the running of the group. It would be useful if you could come to our four monthly Ideas Meetings but not essential. Committee members can keep in touch and make their contribution via phone and/or email. You would be asked from time to time to make joint decisions with your fellow committee members on matters that affect Network MESH. A committee member is automatically a trustee of Network MESH but this is nothing to worry about. In practice, the obligations don’t change the way in which we have always run Network MESH. All members who want to contribute to the running of the group are encouraged to attend the Ideas Meeting: you do not need to be a committee member to come along and give us your input.
If you would like to stand as a committee member or contribute to the group in some other way, please contact me on 020 8400 1904. I will do my best to answer any questions you have about the group.

 
Tony Golding

 
Transport to Ealing Centre for Independent Living (ECIL) ECIL is very close to the intersection of Ealing Broadway and Drayton Green Road. It is not near a tube station but is near West Ealing rail station. First Great Western trains run from Paddington to West Ealing via Acton and Ealing Broadway. It is well served by buses (numbers 207, 427, 607, 83, E2, E3, E7 and E8). Coming by bus, walk west along the Broadway from the intersection, turn right up Bedford Road and ECIL is immediately in Bayham Road (No. 1), the second turning on the left. There is a small c

A Talk by Professor Lipkin in London on 3 September 2014

Those of you monitor ME news online may have seen this already but I’m pleased to tell you that the ME Association and Action for ME have persuaded Professor Ian Lipkin to speak at a special event in London while he is over here.  Prof Lipkin, who is the John Snow Professor of Epidemiology, Professor of Neurology and Pathology at Columbia University, New York, has been funded by the M.E. community to present to researchers at the CMRC conference in Bristol on 1 and 2 September. This is a great opportunity for members who are able to travel to central London to hear a world leading scientist talk about what he is doing to find the cause of ME, something to which he has publically committed himself (more information on him below).  Professor Lipkin is the person the US government turned to to adjudicate the XMRV controversy two years ago. I hope you can come along.

The seminar, which is being held jointly by Action for M.E. and the ME Association in London on Wednesday 3 September, will take place from 10am to noon at the offices of Allen & Overy, at One Bishops Square, London E1 6AD and is open to anyone interested to hear about Prof Lipkin’s work focused on infection and M.E.

To attend you have to register beforehand online here https://www.surveymonkey.com/s/lipkinseminar  Alternatively those without internet access or who find it difficult can call Action for ME on 0117 927 9551. Tickets cost £5 per person to contribute towards the cost of the event and include refreshments (tea, coffee, biscuits – incl. dairy/gluten-free – and fruit) between 9.30 and 10am.

Dr Charles Shepherd, medical advisor to the ME Association said, “This is a unique opportunity for people to come and listen to one of the world’s leading experts in virology speak about the role of infection in M.E./CFS. Many thanks to everyone who donated to the appeal to bring Professor Lipkin to speak at both the UK Research Collaborative (CMRC) conference in Bristol and now at this extra meeting in London.”

Sonya Chowdhury, Chief Executive of Action for M.E. said, “I am absolutely delighted and thrilled that Prof Lipkin is able to be our guest speaker. This is a fabulous opportunity to hear an internationally-renowned physician and scientist, now working in the field of M.E./CFS, at first hand. It promises to be a fascinating event.”

More information on Professor Lipkin

W. Ian Lipkin, M.D., is internationally recognized as an authority on the use of molecular methods for pathogen discovery and the role of infection in neurologic and neuropsychiatric diseases.

Dr. Lipkin has over 30 years of experience in diagnostics, microbial discovery and outbreak response. He has mentored and trained over 30 students and post-doctoral fellows and leads a workforce of over 65 principal investigators, post-doctoral fellows and research and support staff with expertise in sample and database management, bioinformatics, biostatistics, diagnostics, molecular biology, experimental pathology, serology, culture, animal models, and staged strategies for efficient pathogen discovery and proof of causation.

In the 1980s, Dr. Lipkin identified AIDS-associated immunological abnormalities and inflammatory neuropathy, which he showed could be treated with plasmapheresis, and demonstrated that early life exposure to viral infections affects neurotransmitter function. Dr. Lipkin was the first to use purely molecular methods to identify infectious agents. In 1999, he identified West Nile virus as the cause of encephalitis in North America. He developed MassTag PCR and Greenechip technology, two multiplex assays that have been used to identify and characterize more than 400 viruses, and was the first to use high throughput sequencing for pathogen discovery. In 2003, Dr. Lipkin established the Norwegian Autism Birth Cohort (ABC), the largest prospective birth cohort devoted to investigating gene-environment-timing interactions and biomarker discovery. In 2012 Dr. Lipkin led a study in collaboration with the National Institutes of Health and six other sites across the country to test the association between XMRV and Chronic Fatigue Syndrome.

Dr Lipkin is currently raising funds for an additional project, the Microbe Discovery Project. As he says ““I think that the microbiome is going to be where the action is in ME/CFS…  I am really eager to pursue that work.”

Regards
Tony

NETWORK MESH (WEST LONDON) ANNUAL GENERAL MEETING AND APPOINTMENT OF COMMITTEE MEMBERS

The Network MESH (West London) Annual General Meeting will be held on

Wednesday 5 November 2014 at 2.30pm

at the Ealing Centre for Independent Living (ECIL),1, Bayham Road, West Ealing, W13 0TQ

We are, as usual, holding our AGM at ECIL. The formal business we have to go through as a charity (see below) will only take a few minutes and we will do this at the end. We have this year a speaker from the ME/CFS Biobank, which is located at the London School of Hygiene & Tropical Medicine. This is an opportunity to catch up on what is happening at this important research project for people with ME, as it moves from the sample to the analysis phase.

As a registered charity, Network MESH is required to hold an AGM each year to which all members are invited. At the AGM the chairman will report on our work in the last year and members will have an opportunity to vote for committee members for the following year (assuming, of course, there are more nominations than posts to be filled). Each year existing committee members must stand down but can put themselves forward again for re-election. Our constitution says we can have up to 10 committee members, with a minimum of 3. Currently we have 6. In addition, as a registered charity, we need to have some committee members to serve as officers, namely chairman, treasurer and secretary.

Please do consider whether you could become a committee member and help with the running of the group. It would be useful if you could come to our three monthly Ideas Meeting but not essential. Committee members can keep in touch and make their contribution via phone and/or email. You would be asked from time to time to make joint decisions with your fellow committee members on matters that affect Network MESH. A committee member is automatically a trustee of Network MESH but this is nothing to worry about. In practice, the obligations don’t change the way in which we have always run Network MESH. All members who want to contribute to the running of the group are encouraged to attend the Ideas Meeting: you do not need to be a committee member to come along and give us your input.

If you would like to stand as a committee member, please contact me on 020 8400 1904. I will do my best to answer any questions you have about the group.

Tony Golding

Transport to Ealing Centre for Independent Living (ECIL)

ECIL is very close to the intersection of Ealing Broadway and Drayton Green Road. It is not near a tube station but is near West Ealing rail station. Thames Trains run from Paddington to West Ealing via Acton and Ealing Broadway. It is well served by buses (numbers 207, 427, 607, 83, E2, E3, E7 and E8). Coming by bus, walk west along the Broadway from the intersection, turn right up Bedford Road and ECIL is immediately in Bayham Road (No. 1), the second turning on the left. There is a small car park and it may be possible to park in the road close by.

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

Dr Charles Shepherd’s Talk at our 2012 AGM

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.

 

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

 

What is ME?

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,

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