M.E. and exercise – when will they ever learn?
The ME Association Chairman, Neil Riley, wrote this editorial in the winter 2014 edition of the membership magazine, ‘ME Essential’. 2014.12
Monday Night Group - Goldilocks and the Three Bears
The Monday Night Group donates all their profits to local causes in the Wyre Forest area, - our group has received thousands of pounds in the past.
The Monday Night Group pantomime will be a production of Goldilocks and the Three Bears between January 23 and 31 at the Stourport Civic Theatre Hall. 2014.11
Membership form for October 2014 - Sept 2015 now online. 2014.11
Special Educational Needs and Disability (SEND) Reforms
Worcestershire County Council and SEND Information, Advice and Support Service (SENDIASS-formally known as Parent Partnership) are joining together to offer some one hour long information sessions for parents/carers/families about the new changes.
Information sessions are on 20 and 22nd October, plus 5, 6, 13, 17 and 20 November.
Worcestershire County Council - Special Educational Needs Disabilities (SEND) Information and Support Service
More information - about the infromation sessions (pdf).
ME Research UK: £1 million of biomedical research
In 2014, ME Research UK reached a milestone, topping the £1 million mark in grants awarded to researchers. This represents 35 specific biomedical projects, the results of which have now been published as 58 research papers in peer-reviewed scientific journals. ME Research UK have produced a special 32-page edition of Breakthrough magazine entitled, “£1 million of biomedical research: an overview of the projects you have funded”. An on-line version is now available (as a pdf file).
The aim of the overview is to give non-scientists an easily digestible summary of the biomedical research we have supported over the years. It also discusses some of the less well-known aspects of research funding, such as the need for programmes of research that continue year-on-year. Subject areas include:
• Genes and systems analysis • Infection • Definitions and diagnosis
• Immunity • Circulation and the blood •Clinical trials and therapies
• Brain and nervous system • Exercise and muscle • Pain and sensitivity
• Children and young people • Research infrastructure • Programmes of research 2014.09
“We need you - Can You Help” & “The Group and it’s Future”.
“We need more people to help to continue with the Group as it is”
- says our group’s Chair. 2014-09
Worcestershire ME Support Group AGM at
Museum of Carpet, Kidderminster on Monday 29th September, 2014
Letter from Chairman (Extract from Sept 2014 newsletter) (pdf).
September - the Woodrow Library Redditch meeting is not continuing due to lack of response - Jackie Elston is happy to meet up in the Woodrow area, or maybe a café in the Redditch town Centre, or just have a chat on the phone.
All other meetings - Droitwich, Pershore, Worcester, Malvern and Kidderminster, resume in September - see dates on our calendar. 2014.09
The Neurological Alliance’s Patient Experience Survey
- covering the whole of England.
Here is your opportunity to explain your experiences locally. Myalgic encephalomyelitis (M.E.) and Fibromyalgia (FMS) are both listed.
This online survey will be open until Monday 15th September 2014.
The Alliance, who work with more than 80 neurological charities and patient groups in England, say the results will be fed into a major report, due to be published later this year. The survey contains about 25 questions and should take no longer than 20 minutes to complete.
About the survey from the ME Association (MEA) -
Publication by Jane Colby, Executive Director of Tymes Trust, July, 2014
'False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)'
A Peer reviewed academic paper, commissioned and published by the journal "Argument and Critique." www.argumentcritique.com/publications.html
Full article available at - www.argumentcritique.com/uploads/1/0/3/1/10317653/colby_j.pdf
ME Association round-up of recently published research abstracts
Worcestershire Health and Care NHS Trust Survey
Here is your opportunity to explain how the Worcestershire NHS could help people with C.F.S./M.E.
The Worcestershire Health and Care NHS Trust (WHCT) explain the next phase of their Community Services Development, and ask for your input. This online survey will be open until 14th September 2014.
ME/CFS Patients - Patient Choice Schemes
The Countess of Mar (Chairman of the Forward-ME Group of charities) -
received a written answer to her Parliamentary Question about patient choice in the NHS. 2014.07
Disability Entitlements for Hearings and Appeals
ME is listed in the Equal Treatment Bench Book which contains guidance on Equality & Diversity issues for the judiciary, this includes Tribunal Chairs. 2014.07
ME Awareness Month - in Worcestershire Media
• M.E. Article in the Worcester News ‘Your Health’ supplement, 12 May, 2014. ‘It’s such a relief to know other people have the same symptoms’.
(Copy of the text from the newspaper article for easier reading.)
• The Two Sides of M.E. - two ‘selfie’ photographs - Clare Cartlidge of Bromsgrove is raising funds for Invest in ME.
• Worcestershire Group’s ME Awareness Event and Redditch informal gatherings publicised in the Redditch Advertiser, by Jacqueline Elston, Redditch Area Contact. 2014.06
UK CFS/ME Research Collaborative (CMRC) conference -
1 and 2 September, Bristol
(The event is primarily for researchers)
People with ME are also welcome to attend a joint session on the afternoon of Monday 1 September – see the CMRC patients Flyer. The aim of this session is to enhance engagement between researchers and patients, and it will include a question and answer session with panellists Professors Dantzer, Lloyd and Lipkin, who will be joined by Professor Maria Fitzgerald of UCL. 2014.05
‘Recovered’ – or do you only feel better?
MEA chairman Neil Riley unpicks a central thread in the PACE Trial
“Recovery” as defined in the PACE Trial, involving the use of Cognitive Behaviour therapy (CBT) and Graded Exercise Therapy (GET), is not what you think it is. (Feb 2014)
The Recovery Song on Youtube. The follow-up video, explaining the details of the "recovery". 2014.05
Worcestershire ME Support Group’s 2014 M.E. Awareness Event
Saturday, 17 May
‘Film Show’ DVD presentations on ME/CFS/FMS recordings from previous ME Research UK (MERUK) and Invest in ME (IiME) Conferences, plus recent YouTube videos.
Join us on the afternoon of Saturday, 17 May, at the Museum of Carpet, Stour Vale Mill, Green Street, Kidderminster, DY10 1AZ.
You are welcome from 12.00 noon to 5.00 pm, at any time that suits you. There will be plenty of breaks between the DVD presentations.
All people with M.E., CFS, PVFS & FMS, their carers, friends and relatives, are welcome. 2014.04
Walk for ME 2014 is supporting Invest in ME and ME Research UK.
Walk for ME aims to raise awareness of ME/CFS alongside raising money for ME charities focused on biomedical research into the causes of ME/CFS.
Walk for ME 2013 had walkers across the UK as well as in Ireland, Spain, New Zealand, and both coasts of America and in total raised £11,694.40 including gift aid. Wherever you are, we hope you will become involved this year!
The aim of ‘Walk for ME’ is to get as many people as possible, especially the family and friends of those affected by ME, to do a sponsored walk of whatever length they feel comfortable with. There is no minimum distance, no targets and, although it runs principally through
ME Awareness Week (11th to 17th May 2014), no set dates.
See the walkforme website to find out how to take part. 2014.03
Invest in ME - 9th International ME Conference 2014
Friday 30 May, Westminster London.
Conference Agenda -
The conference theme is "Synergising Research into ME"
"1. The interaction of two or more agents or forces so that their combined effect is greater than the sum of their individual effects.
2. Cooperative interaction among groups...... that creates an enhanced combined effect." 2014.03
Sad news - from our Group
Mike Pearson passed away last Friday, 14 February, after a very short illness. Mike, and his wife Pauline, have collected funds for ME Research UK for the last six years. 2014.02
Action for M.E. health and welfare survey -
Action for M.E. is following-up its major 2008 report by looking, five years on, at health, welfare, employment and education for people with M.E. in the UK.
The deadline for completing the survey is Friday 14 February 2014.
From Action for M.E. -
- It’s a long survey, so please pace yourself and take your time. If you would like to ask a carer, friend or family member to help you complete it, please do so. If you are unable to finish it, or would only like to complete certain sections, that’s absolutely fine – any information you can share with us is valuable.
- If you would prefer to fill out a paper copy, please contact us to request one.
- You can choose to remain anonymous, or share your contact details at the end if you are happy for us to possibly follow-up on the information you give us. The details you share with us will NOT be shared outside Action for M.E. in a way that means you can be identified. 2014.01
Exercise and ME/CFS – the evidence -
talk on Wednesday, 5 February. 6.30 - 9.15 pm .
at the Watershed, Harbourside, Bristol
“Exercise and ME/CFS – the evidence” is an exciting opportunity to hear the latest research concerning exercise and ME/CFS. How can exercise be both very harmful for some patients and helpful for others, and are there ways around the problem? We are fortunate to have this opportunity to hear Prof Mark VanNess from the Workwell Foundation, USA, explain what is going on."
More information on voicesfromtheshadowsfilm.co.uk 2014.01