News
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Wednesday 21 November, Kidderminster Library - 2.00 pm
Karen Grant (K. 'Kal' Grant MBACP) will be at our November Kidderminster meeting - telling us about the therapies available at Aspirations Holistic Health, Stourport, and how she can help people with M.E. and FMS. She has also made a special offer for people with M.E./Fibromyalgia or their carers. For more details please see the Special Events section. 2012.11 Christmas and Weekly Online Shopping
If you shop online, please think of our Group first and visit our eStore Please raise money for the group by shopping through our webshop - you won’t spend any more than going to the retailer’s website directly. Nearly 1000 retailers - (from Asda to Zavvi) -see - About the eStore. It is worth checking the special offers. See the file below for details about Waitrose and Sainsburys offers.
NHS in Worcestershire
Information has been put together about the three Worcestershire Clinical Commissioning Groups (CCGs) - South Worcestershire, Redditch & Bromsgrove, and Wyre Forest and the new Worcestershire Health and Care NHS Trust (WHCT). There is a link to the local NHS Chronic Fatigue Service leaflet, which is part of the WHCT’s Worcestershire Integrated Neurological Rehabilitation Service (WINRS). 2012.10 IACFS/ME (The International Association for CFS/ME) ME/CFS Primer for Clinical Practitioners
From the IACFS/ME website: The goal of the Primer is to provide the information necessary for clinicians to understand, diagnose, and manage the symptoms of ME/CFS. The document is available as a pdf - a donation of $15 via paypal is requested. 2012.10 Group Meetings:
NEW: Droitwich: As from November the meeting time will be 1.30 - 2.30 pm. As from October some meeting times will change. New times: Worcester - 2.00 - 3.00 pm Malvern - 2.00 - 3.00 pm Kidderminster - 2.00 - 3.00 pm All at the same venues. Bromsgrove Meetings - Bromsgrove meetings have been cancelled - the last one was in September 2012. New Area Contact for Redditch: Jackie Elston - 01527 458840. Other contacts are on the About Us page. 2012.10 Monday Night Group Pantomime: Jack in the Beanstalk 2013.
The Monday Night Group have supported us for many years with the money the raise from their pantomimes. The next pantomime production from Monday Night Group will be Jack and the Beanstalk in 2013. The pantomime runs from Friday 25th January to Saturday 2nd February 2013. 2012.10 Wednesday 19 September Kidderminster meeting
Unfortunately Mark Garnier (MP Wyre Forest) will not be able to attend the Kidderminster meeting next Wednesday. The Kidderminster meeting will still be held from 1.30 - 3.30 pm on Wednesday 19 September, at Kidderminster Library. All people with M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), plus their carers, friends and relatives, are welcome at Worcestershire ME Support Group meetings. Children welcome - (young people under the age of 18 to be accompanied by an adult). Mark Garnier attended a Kidderminster meeting in September 2011, and is keen to meet more people affected by ME, and hear their current situations. Mark Garnier is a member of the All Party Parliamentary Group on ME and Patron of the Worcestershire ME Support Group. We will let you know when a new date has been arranged. Group collections for ME Research UK (MERUK).
Pauline & Mike Pearson organised the Group collection for ME Research UK (MERUK) at Becketts Farm on Saturday 1 September 2012. They raised £225. 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. Links to newspaper letters - 20 August, and 30 August. Freedom of Information request to Worcestershire Health and Care NHS Trust: About GP Guidance on ME/CFS and the policies the NHS Trust has regarding ME/CFS.
A group member, Lynsey Foster, made a Freedom of Information request to Worcestershire Health and Care NHS Trust. The replies are here on www.whatdotheyknow.com. Patient’s Choice Award -
Worcestershire Health and Care NHS Trust’s Award Ceremony. “Amongst the winners was Occupational Therapist, Sue Gordon-Saner, who works at the Princess of Wales Community Hospital in Bromsgrove. Sue picked up the Patient’s Choice award, which is nominated by patients.” Until Sue’s retirement at the end of July, she was the Worcestershire CFS/ME Service’s Senior Occupational Therapist/Co-ordinator. This service is part of the Herefordshire & Worcestershire CFS/ME Local Multi-Disciplinary Team (LMDT) NHS Press release. Article in Bromsgrove Advertiser. 2012.08 Group Annual General Meeting (AGM) -
Tuesday, 4 September, 2.00 - 4.00 pm. Our AGM this year will be held at the Diglis House Hotel, (William Leader Room), Severn Street, Worcester, WR1 2NF. During the afternoon, we will also discuss the Group’s future. What do you want from your support group? - bring your suggestions to this meeting, or let us know beforehand Group Members will be receiving the AGM Agenda, shortly. Dr Betty Dowsett, 1920 – 2012.
Consultant microbiologist who championed M.E. - died on 14 June 2012. Dr Dowsett collaborated with Dr John Richardson and Dr Melvin Ramsay in their various studies into M.E. and, with Prof Leslie Findley, she helped set up the National M.E. Centre in Oldchurch, Essex. Dr Dowsett studied medicine at Edinburgh University. She had been living in a nursing home in Cambridge for some years. Her funeral took place on 29 June. Her family asked that, instead of sending flowers, people should make donations directly to the M.E. charity of their choice. Tributes from M.E. charities: ME Association: Dr Betty Dowsett, 1920 – 2012 Consultant microbiologist who championed M.E. Action for M.E. : Dr Betty Dowsett dies aged 91 The Young ME Sufferers Trust: Dr Elizabeth Dowsett Remembered 2012.07 A Service of Thanksgiving for the life of Betty Hughes MBE,
Pershore Abbey, 12 June. Tributes from the local press - the Evesham Observer, the Evesham Journal and Worcester News. 2012.06 Betty Hughes MBE, our Group President
Betty passed away peacefully on May 29th, 2012, at Worcestershire Royal Hospital.
Many of you will know Betty, who has raised many thousands of pounds for our group over the years, including many garden parties at her own Pershore home. In May 2011 Betty Hughes MBE stood down as a Pershore Town Councillor, after 28 years, including two year years as Pershore Mayor. A Service of Thanksgiving will be held on Tuesday, June 12th, at 2 p.m. in Pershore Abbey. Family flowers only, donations for her favourite charities, cheques payable to E Hill & Son Donation Account, may be sent to Fairfield House, Pershore, WR10 1HZ. 'Lost Voices' and Betty Hughes' granddaughter Naomi. 2012.06 International ME Day Saturday May 12: ME Awareness in Worcestershire
www.bromsgrovestandard.co.uk: A Bromsgrove woman who has ME is raising awareness of her the delibitating condition ahead of National ME day on Saturday (May 12). more ... A display stand has been set up at Worcestershire Royal Hospital with information about M.E., the group and about research. 2012.05 Speakers at May meetings:
Dr Helen Ayres, CFS/ME Psychologist, who is part of our local CFS/ME Local Multi-Disciplinary Team (LMDT), will be at our Kidderminster meeting on 16 May. Keith Parry of Telecare will be at our Worcester meeting on 9 May and Malvern meeting on 10 May. 2012.04 Voices from the Shadows - trailer below (or here)
This film is now available on PAL DVDs to purchase from the USA and UK as well as many other countries. BACME Conference: The West Midlands local ME support groups consortium (WMMEG) website has a report from the 2012 BACME conference.
The conference 'keynote address' - "Pace - in Practice" was provided by Peter White (Professor of Psychological Medicine at Barts Hospital, and principal investigator of the PACE trial). Other speakers included Professor Trudy Chalder and Dr Esther Crawley (Consultant CFS/ME Paediatric Service RNHRD Bath and medical advisor to the Association of Young People with ME - AYME). Dr Alastair Miller, medical advisor to Action for ME, introduced the speakers. 2012.04 Contribution-based Employment and Support Allowance is due to end for claimants, in the Work-Related Activity Group, who have received it for 365 days.
Copy of letter to claimants added to the Benefits News page. 2012-04 ME Association annual ‘M.E. Question Time’
will be held in Shrewsbury on Saturday, 6 October 2012 – in conjunction with the Shropshire ME Group. The event – which will be free entry – will held in the Lord Hill Hotel in the centre of town, beginning at 2pm. Panellists confirmed so far: Dr Charles Shepherd (medical adviser, The MEA), Dr Nigel Speight (paediatric adviser, The MEA), Jane Colby (executive director, the Young ME Sufferers Trust), Sue Luscombe (registered dietitian) and Dr Sarah Myhill (ME/CFS specialist in private practice at Knighton, Powys). There will be no requirement to book tickets in advance. Please just turn up on the day and you will be made to feel welcome. The Shropshire ME Group hope to record the event. 2012.03 Research: Reporting of harms* associated with GET and CBT in ME/CFS by Tom Kindlon, Information Officer (voluntary position), Irish ME/CFS Association.
“Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, published in the IACFS/ME Fall Bulletin 2011. [Links to Abstract - Full Paper] Topics covered include: “Exercise and the measurement of the effects of exercise programs” “Direct reports of adverse reactions by patients” “Guidelines for the reporting of RCTs and application to ME/CFS RCTs” [randomised controlled trials] “Considerations for future research” “PACE Trial – A model of excellence in harms reporting?” Extract from Conclusion: “It is hoped that this paper will lead to a greater focus on the reporting of harms in ME/CFS, not just those that might be associated with GET or CBT, but from any posited treatment. Interventions should not be presumed to be harmless when there exists evidence of potential harm and there have not been well-planned systematic methods to track and assess harms both within and outside trials. “ * see the end of the introduction on the full report for a definition of harms. The PACE trial referred to 'Serious Adverse Events'/ 'Serious Adverse Reactions'. A further term is 'Suspected Unexpected Serious Adverse Reactions'. Worcester News: Benefit Changes
A housebound ME sufferer is so concerned about planned cuts to the disability living allowance that he pushed his endurance to the limit by travelling to London to join a mass protest. .... more 2012.02 ESA: 'arbitrary time limit'
Jenny Willott (Liberal Democrat MP for Cardiff Central): "Returning to the issue of the time-limited employment and support allowance, there is real concern about an arbitrary time limit. As was kindly pointed out by the right hon. Member for East Ham (Stephen Timms), at a party conference the Liberal Democrats showed their concern by passing a motion against arbitrary time limits. However, the amendment from the Lords and the Government’s original proposal both set arbitrary time limits; it is just that one is longer than the other. Neither of the options in front of us would get rid of an arbitrary time limit, as a number of Members have highlighted." (From the House of Commons Welfare Reform debate on 01/02/2012.) 2012.02 Ending the ESA youth rules -
The Welfare Reform Bill will remove the Youth Rule which is described on Parliament.uk: "Contributory Employment and Support Allowance is, by definition, payable to people with a sufficient record of National Insurance contributions. However, there are also provisions which allow a person incapacitated early in life to gain entitlement to contributory ESA without having to satisfy the usual contribution conditions." In relation to this, Chris Grayling refered to the following ruling during the Welfare Reform debate on 01/02/2012: Social security coverage is fundamental for mobile EU citizens. The Court of Justice of the European Union in its judgment in Case C-503/09 (Lucy Stewart) confirmed the fundamental status of EU citizenship and its rights, in particular the freedom to move and reside in another EU country, as well as the right to social security coverage. This right could not be fully effective if a person would be excluded from claiming a social security benefit on the sole ground that he or she has previously not been present or is not present in the country in which he or she claims the benefit. For more details see the Eur-Lex site - which has full details of the case. 2012.02 Guardian: Welfare reform bill – Lords debate and live discussion
- update The government has .. lost three straight votes in the Lords. They are for the following amendments:
Guardian: Welfare reform bill – Lords debate and live discussion 2 quotes from this article: "Crossbencher Lord Patel's ammendment increasing the elegibility of period for contributory employment and Support Allowance (ESA) ffrom one year to two. Labour is supporting this ammendment, where much of the focus will be on cancer patients who would lose up to £94 a week in sickness benefit as a result of this proposed change. The Macmillan Cancer charity estimates 7,000 patients could be affected." "An amendment put down by crossbencher Lord Listowel to ensure those who are disabled at a young age (and therefore have been unable to build up national insurance contributions) will still be able to claim ESA. Labour peers are supporting this." BBC Democracy Live/House of Lords - see timetable of debates on top right. (At time of writing said: 3.40 pm and after 8.30pm- Welfare Reform Bill.) or view on the Parliament Live website 2012.01 Peter Luff MP, Mid Worcestershire at our February Droitwich meeting - He will be joining our Droitwich meeting on Friday 3 February at the Methodist Church, Amphlett House, Worcester Rd, Droitwich, WR9 8AW, from 1.30 pm. 2012.01
“Dick Whittington”, 20 - 28 January, Stourport Civic Centre
Next January, the Stourport Monday Night Group’s production will be “Dick Whittington” - please tell your friends. Every penny of profit from the Stourport Monday Night Group’s pantomimes goes back into the local community. Over 80 local organisations benefited by over £19,000 from their production of “Red Riding Hood” last year - including our group. Help the Monday Night Group to continue helping us. They are great audience participation productions. Call 01299 825170 for tickets. Daytime and evening tickets available. Further information on their website - www.mondaynightgroup.org. 2011.11 |
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