News
Sir Peter Luff
Patron of the Worcestershire ME Support Group, Peter Luff MP, is to be knighted for more than two decades of public and political service. The New Year's Honours List 2014 2013.12
News from ME Research UK & from Tymes Trust
ME Research UK e-newsletter - November 2013 Tymes Trust Email Alerts - 'ALERT 2013-10' - 26 November 2013 2013.11 Speaker at our Pershore November meeting - Tuesday 12 November
Camilla Ballentyne, Lead Specialist Occupational Therapist (OT), NHS Chronic Fatigue Syndrome/ME Service, will be joining us on the afternoon of Tuesday 12 November (from 2.00 pm at the Pershore Baptist Church, 2 Broad Street, Pershore, WR10 1AY). Camilla joined the Herefordshire & Worcestershire CFS/ME Local Multi-Disciplinary Team (LMDT) at the beginning of the year, taking over from Sue Gordon-Saner. Please join us to find out more about the LMDT. All people with M.E. (myalgic encephalomyelitis), CFS (chronic fatigue syndrome), and FMS (fibromyalgia), their carers, friends and relatives, are welcome to come along to the group's gatherings where relevant useful information is available. (Children are welcome - young people under the age of 18 to be accompanied by an adult). If you are able, and if you haven’t been to one of our informal local monthly meetings, or group lunches, for sometime please do join us. With the object of sharing information gained from personal experience, your input is valuable. 2013.10 UK CFS/M.E. Research Collaborative Executive Board
Summary of Discussion 7th October 2013 The Summary of the meeting includes - Research Priorities; Membership of the Collaborative, and details of the Research Collaborative’s Annual Science Conference. Also, there are some interesting comments on the MEA website under this article. 2013.10 ![]() Group collection for ME Research UK (MERUK).
Pauline & Mike Pearson organised the Group collection for ME Research UK (MERUK) at Becketts Farm on Saturday 5 October 2013. They raised £180. Thank you. Could you organise a similar collection locally? This raises funds for ME research, and at the same time raises awareness of our group. Contact Pauline and Mike for tips, etc (Tel 01564 823597). 2013.10 Research on Rituximab and M.E.
A Malvern man says that his ME symptoms reduced for a short time whilst taking Rituximab during treatment for cancer (non-Hodgkin lymphoma). (Reported in the Malvern Gazette and the Ledbury Reporter.) 2013.09 ![]()
More on Rituximab:
• Action for ME: UK-based trial of rituximab. (24 Sept 2013) Invest in ME will be coordinating the fundraising for this trial. • ME Research UK on funding rituximab studies in UK (14 Aug 2013) • Newcastle University press release about Research being carried out in Newcastle University. One study involves examining whether a monoclonal antibody, Rituximab, could be used as a medicine in order to understand more about fatigue mechanisms. Rituximab is highly successful in treating rheumatoid arthritis, some cancers and the profound fatigue experienced by patients with an immune liver disease known as Primary Biliary Cirrhosis. Last year, Professor Newton and Dr Fai Ng at Newcastle University were awarded two of only five Medical Research Council grants to study the biological basis of CFS. (23 April 2013) • Daily Mail: Cancer drug 'key to treating chronic fatigue' as experts say syndrome may be caused by defective immune system (24 October 2011) Collection for ME Research - Saturday 5 October at Becketts Farm, Wythall. Can you help (or know someone who can)? .
Pauline and Mike Pearson are arranging their annual collection for ME Research UK (MERUK) on Saturday 5 October at Becketts Farm, Alcester Road, Wythall, B47 6AJ. Easy to find - just off Junction 3 of the M42. More volunteers to help on the day are welcome, please contact Mike or Pauline Pearson on 01564 823597. And/Or - Could you organise a similar collection locally? This raises funds for ME research, and at the same time raises awareness of our group. Contact Pauline and Mike for tips, etc. 2013.09 Group Annual General Meeting (AGM) - Thursday, 26 September
at Museum of Carpet, Stour Vale Mill, Green Street, Kidderminster, DY10 1AZ , from 2.00 pm to 4.00 pm. Information for parking listed here. Please join us at this meeting if you can, or contact us beforehand. The Agenda is being posted/emailed to members. Please help with the publicity - a poster for the AGM is below. Speaker Postponed (monthly meeting in Pershore running as usual): Speaker at our Pershore September meeting - Tuesday 10 September Camilla Ballentyne, Lead Specialist Occupational Therapist (OT), NHS Chronic Fatigue Syndrome/ME Service, will be joining us on the afternoon of Tuesday 10 September (from 2.00 pm at the Pershore Baptist Church, 2 Broad Street, Pershore, WR10 1AY). Camilla joined the Herefordshire & Worcestershire CFS/ME Local Multi-Disciplinary Team (LMDT) at the beginning of the year, taking over from Sue Gordon-Saner. Please join us to find out more about the LMDT. All people with M.E. (myalgic encephalomyelitis), CFS (chronic fatigue syndrome), and FMS (fibromyalgia), their carers, friends and relatives, are welcome to come along to the group's gatherings where relevant useful information is available. (Children are welcome - young people under the age of 18 to be accompanied by an adult). If you are able, and if you haven’t been to one of our informal local monthly meetings, or group lunches, for sometime please do join us. With the object of sharing information gained from personal experience, your input is valuable. 2013.08
Online clinic on CFS/Fibromyalgia/ME - 14 - 20 Aug 2013
NHS Choices and talkhealth will team up with ME Association, Action for ME, AYME (Association of Young People with ME), CFS Research Foundation, FibroAction and Fibromyalgia Association UK to present an Online Clinic on CFS/Fibromyalgia/ME. Clinical experts are available to answer questions about issues surrounding CFS, Fibromyalgia and ME. 2013.08 Forthcoming Meetings
September onwards - All venues remain as at present There are no group meetings during August.
Launch of the UK CFS/ME Research Collaborative (CMRC)
The UK CFS/ME Research Collaborative (CMRC) was launched in April. The aim of the CMRC is to promote the highest quality of basic and applied evidenced-based and peer reviewed research into ME/CFS by bringing together national agencies, ME/CFS charities, and working researchers from across the UK who wish to work towards that common goal. The following charities are executive board members of the CRMC: Action for M.E. Association of Young People with M.E. CFS Research Foundation ME Association ME Research UK. The UK CMRC is also supported by the Medical Research Council, the National Institute of Health Research and the Wellcome Trust. Prof Stephen Holgate, MRC Professor of Immunopharmacology, University of Southampton, is Chair of the CMRC. Dr Esther Crawley, School of Social and Community Medicine, University of Bristol, is Deputy Chair of the CMRC. ME Association Statement ‘how can we not want any part of that?’ Statements from non-members: Invest in M.E., Tymes Trust, and 25% ME Group. UK CFS/ME Research Collaborative - Charter UK CFS/ME Research Collaborative - Summary of executive board discussion - 23 May 2013 (2013.06) Kidderminster May Meeting - Lee Cartwright of Worcestershire County Council, will be at our Kidderminster meeting on 15 May to give us information on the Physical Disability Support Service, part of Adult Social Care, in Worcestershire. The meeting is at the new Kidderminster venue Museum of Carpet, Stour Vale Mill, Green Street, Kidderminster, DY10 1AZ - from 2.00 - 3.00 pm.
Worcester May Meeting - Sally Pasquill, Wellbeing Coach and Holistic Therapist, of The Fold Natural Therapy Centre, will be at our Worcester meeting on Wednesday 8 May. Pershore Meetings - As from the meeting on Tuesday 14 May our meetings will be from 2.00 - 3.00 pm at Pershore Baptist Church, 2 Broad Street, Pershore, WR10 1AY. More details on the 'Meetings' page.
Malvern Meetings - As from the meeting on Thursday 9 May our meetings will be from 2.00 - 3.00 pm at The Malvern Cube, Albert Road North, WR14 2YF. More details on the 'Meetings' page. Kidderminster Meetings - As from the meeting on Wednesday 20 March our Kidderminster meetings will be from 2.00 - 3.00 pm at the Museum of Carpet, Stour Vale Mill, Green Street, Kidderminster, DY10 1AZ. More details on the 'Meetings' page. March meetings - Lee Cartwright of Worcestershire County Council, will be at our Worcester and Malvern meetings in March to give us information on the Physical Disability Support Service, part of Adult Social Care, in Worcestershire. Wednesday 13th at Horizon Community Centre, Midland Road, Worcester, WR5 1BB Thursday 14th at Malvern Evangelical Church, 204-208 Pickersleigh Road, Malvern, WR14 2QX All people with M.E., CFS, PVFS & FMS, their carers, friends and relatives, are welcome to come along to all informal gatherings. (Children welcome - young people under the age of 18 to be accompanied by an adult). 2013.03 ESA Reports from Action for ME and the 25% ME Group - both highlighted at the APPG (All Party Parliamentary Group) on ME meeting on 15 January 2013.
The files listed below are on the Benefits News section - • 25% ME Group’s “ESA feedback report 2013” giving a Report on Feedback from Members 2012. • Plus ‘Key issues’ (summary of this report) • Action for ME’s “Time for Action on the Work Capability Assessment” 2013.02 PACE (Pacing, graded Activity & Cognitive behaviour therapy: a randomised Evaluation) trial latest results.
ME Association: latest PACE study results - recovery after treatments ME Association: initial reaction from Dr Charles Shepherd to latest PACE Trial results on recovery See information about the previous results (news archive). House of Lords debates the PACE Trial February 6 2013. Tabled By The Countess of Mar: To ask Her Majesty's Government what assessment they have made of the effects of the PACE trial (Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation) on provision of health and social care and welfare benefits for people with chronic fatigue syndrome/myalgic encephalomyelitis. ME Association: report and video of debate Hansard report of debate 2013.02 Personal Independence Payments (PIP) / Blue Badges
Multiple items of news have been added to the Benefits page about PIP including about an amendment to the regulations so that the assessment will consider what can be done safely, reliably, repeatedly and in a reasonable time period. There is a link to the Disability Rights UK factsheet on PIP. There is also news about Blue Badges. 2013.02 Our Group - Area Contacts -
Monthly Meetings - Lunches - Meeting Venues Our Group - We are looking for more people to be involved in the group, including a Secretary/Co-ordinator, Vice-Chair, people to fill the Area Contact Vacancy (see below), Fundraising Contacts, and a Publicity/Media Contact. Please use our form, email us or phone Ian Logan (01886 888419). The amount involved in each role varies so please contact us to discuss. (If contacting us by form/email please leave your phone no.) Area Contacts - We are looking for a new Area Contact to take over the Pershore/Evesham area from Phil Moss. The meetings in Pershore have been very well attended, with an average of 9 people, and it is hoped someone will volunteer to be the Area Contact for this area. Again, please contact Ian Logan (01886 888419) - many thanks. Monthly Meetings - Monthly Meetings are held in Worcester, Droitwich, Malvern, Pershore and Kidderminster (all months except January and August). Check here for uptodate information including venues and timings. Lunches - This year's first lunch will be on Monday 28 January at Blooms Worcester Garden Centre - Blooms Worcester Garden Centre, Droitwich Road (A38), Worcester, WR3 7SW. All dates and venues for 2013 lunches are on the website. Join us for lunch, or just a cuppa and chat. As well as lunches, it has been suggested that we have a few ‘teas’ during the Spring/Summer - a get together at a Garden Centre at maybe 4.00 - 5.30 pm, for a cuppa and chat (and cake too!). Would you be interested in this? There will soon be changes taking place - when arrangements have been confirmed information will be on the group website. The current situation is - Pershore Meeting Venue - We have a room booked for February and March at the Town Hall. But after that our normal venue at the Town Hall will not be available for a few months whilst the library will be temporarily in the building. If you know a suitable venue that we could use, please get in touch with Ian (01886 888419) - many thanks. Kidderminster Meeting Venue- We have a room booked for February in the Library. But the Library will not be available from March onwards. This is due to changes taking place in the library. If you know a suitable venue that we could use, please get in touch with Audrey Hammond (01562 822834) - many thanks. It is possible that the Library may be available later in the year. 2013.01 |
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