Edinburgh ME Self Help Group (edmesh)

Therapies for ME Project

Volunteer Opportunity

ARE YOU INTERESTED IN FREE TRAINING IN A COMPLEMENTARY THERAPY?

Please note that this training opportunity is exclusive to edmesh members who:

(a)    are current members and have been members for at least 6 months
AND
(b)    have a diagnosis of ME-CFS

If you satisfy the above criteria and want to find out more, please keep reading.

Edmesh is delighted to announce that we have been successful in securing a grant from the Self Management Fund for Scotland, jointly funded by the Long Term Conditions Alliance Scotland (LTCAS) and the Scottish Government.  We are one of only 16 successful applicants and we have been awarded £23,330.

The ‘Therapies for ME’ Project was borne from a desire to improve the quality of life for people with ME-CFS. We believe a long term condition should not be endured but managed positively. There is no ready ‘cure’ for those who suffer from ME-CFS - it is a matter of learning how to live with and manage the condition in the most positive way possible.  The ‘Therapies for ME’ Project aims to empower people with ME-CFS to do exactly this.

Complementary therapies are an expensive option for many of us living with ME-CFS, especially for those of us who have suffered job loss and are depending on benefits.

What We Are Doing

Edmesh wants to use this money to improve the lives of our members by offering free training in complementary therapies to a number of edmesh members.  In return for this free training, successful members will be asked to agree to provide free complementary therapy to other edmesh members over a 2 year period.  The philosophy of this project is to provide self-empowerment within the local ME-CFS community, where we are helping and supporting one another.

This opportunity is exclusive to edmesh members who (a) are current members and have been members for at least 6 months; and (b) have a diagnosis of ME-CFS.

If our “Therapies for ME” Project interests you and you would like more information and/or an application form, either:

• see the links in the ‘Further Information’ section below
• or please contact Margaret Dundas by telephone on 07989 307 062 or by email at margaret@edmesh.org.uk.

We have already recruited the first group of volunteers, and we will be recruiting again in the Spring. Watch this space!

Further Information:

Please click on the links and choose ‘Open’ to view the files, or ‘Save’ to save them to your computer.

If you wish to make an application, please print the application form and send to the address given on the form.

Project Background:

Project Background (MS Word document).
Project Background (PDF document).

Volunteer Role Specification:

Volunteer Role Specification (MS Word document).
Volunteer Role Specification (PDF document).

Application form:

Application form (MS Word format).
Application form (PDF format).

The conference speakers will cover topics including XMRV, enteroviruses and gene expression in ME/CFS.

This is an exciting time for ME/CFS research; there will be edmesh representation at the event. A report on the conference will follow in our newsletter.

Speaker: Dr Raymond Perrin
Topic: The Perrin Technique
Date: Thursday 25 March 2010
Time: 2pm (doors open 1.30pm)

Venue: Lammermuir Hall, St Cuthbert’s Church,
5 Lothian Road, Edinburgh

Everyone welcome. Free talk. Refreshments.
Wheelchair access. Parking nearby.
Lifts available on request.

Dr Raymond Perrin is an osteopath who has been treating and conducting research in to M.E. for many years.

For more information on this talk, please see the next edition of our newsletter, which will be sent out at the end of February.

Please note the meeting is on Thursday 25th March 2010 in the Lammermuir Hall at St Cuthbert’s Church (next to St John’s Church) at the bottom of Lothian Road, at the west end of Edinburgh. Please see the map for directions.

There is parking nearby at the multi-storey car park on Castle Terrace. If you have a blue badge, there are a number of spaces nearer the hall. Otherwise you can be dropped off at the door of the church hall. There are bus stops close by at the bottom of Lothian Road. If you find it difficult to arrange transport to the venue, please contact us to arrange a lift.

Our cafe meetings continue at Debenhams fourth floor cafe, Princes Street, Edinburgh, on the first Wednesday of the month.

The next meetings will be held at:

February 3 at 2.30pm
March 3 at 2.30pm
April 7 at 2.30pm

See here for more information on how to find the cafe.

The total cost for these three events would normally be £55.95, but for edmesh members the total is £24.50 (a huge saving).

See our Join page if you wish to become a member.

Please let our social events organiser know if you would like to go to any or all of these events - he will be only too pleased to give you more information. Email him at jeff@edmesh.org.uk.

Edinburgh M.E. Self-Help Group (edmesh) is delighted to announce that we have been successful in an application to secure funding from the Self Management Fund for Scotland which is jointly funded by the Long Term Conditions Alliance Scotland (LTCAS) and the Scottish Government.

edmesh is one of only 16 successful applicants.

The grant will be used to fund our ‘Therapies for ME’ Project.

More details will follow shortly with a mailing to all our members, a press release and further information on our website.

Update: Further information is now online - see the Therapies for ME section.

More and more people are turning to the Internet to get the information they need to access paths around Scotland. At the moment the provision is very disjointed and unco-ordinated. As part of this work they  would like your help in finding out what it is that ‘Users’ of our paths would look for from an access information website.

The consultants working on this project have developed an online questionnaire on the use of paths, which should only take 5 minutes to complete.

The questionnnaire is at: http://www.pathsonline.co.uk/questionnaire.asp

Responses should be in by October 9th 2009.

The next meetings will be held at:

October 7 at 2.30pm
November 4 at 2.30pm
December 2 at 2.30pm

See here for more information on how to find the cafe.

Speaker: Dr Vance Spence, ME Research UK
Topic: Biomedical Research in ME/CFS: where are we, and where do we want to go?
Date: Saturday 3rd October 2009
Time: 2pm (doors open 1.30pm)

Venue: Lammermuir Hall, St Cuthbert’s Church,
5 Lothian Road, Edinburgh

Everyone welcome. Free talk. Refreshments.
Wheelchair access. Parking nearby.
Lifts available on request.

We had hoped that we would be able to reschedule Dr Jonathan Kerr as our speaker for the October Open Meeting after he had to cancel in May due to illness. Unfortunately, we have been unable to agree a mutually suitable date with him.

It was always our intention for our next Open Meeting to cover the latest in ME research so we are absolutely delighted to announce that Dr Vance Spence, Chairman of ME Research UK, will be coming to talk to us on Saturday 3rd October 2009.

Vance was instrumental in the founding and launching of ME Research UK. A graduate of the Universities of London and Dundee, he was a Principal Clinical Scientist responsible for vascular services and research and, in 1997, he rejoined the University of Dundee Medical School as Honorary Senior Research Fellow in the Department of Medicine, with the objective of stimulating research into the causes of ME.

ME Research UK (MERUK) funds research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS). It has an international remit, and its principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS. It also aims to ‘energise ME research’ by identifying potentially important areas for future biomedical research, producing high quality professional reviews and reports, presenting research at meetings and conferences, and hosting international conferences.

These projects include the gene expression studies being undertaken by Dr Jonathan Kerr at St George’s Hospital, University of London, with co-funding from the Irish ME Trust. A comprehensive list of all the research projects, including the resulting scientific papers, can be found on MERUK’s website: www.meresearch.org.uk

The meeting is on Saturday 3rd October 2009 in the Lammermuir Hall at St Cuthbert’s Church (next to St John’s Church) at the bottom of Lothian Road, at the west end of Edinburgh. Please see the map for directions.

There is parking nearby at the multi-storey car park on Castle Terrace. If you have a blue badge, there are a number of spaces nearer the hall. Otherwise you can be dropped off at the door of the church hall. There are bus stops close by at the bottom of Lothian Road. If you find it difficult to arrange transport to the venue, please contact us to arrange a lift.

We appreciate how difficult it can be for some of our members to get to meetings; we do hope you will be able to join us. If you are unable to attend but have a question you would like to put to Vance, please contact us before October 3rd and we will pass your questions on.