Useful national resources from Action for ME
Following the latest Government restrictions announced on 22nd September, Action for ME has put together a summary of useful resources.
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ANNUAL MEDICAL LECTURE 2019
Cancelled due to COVID
Are you aware of M.E.?
The attached file is a copy of a booklet produced by the Richmond & Kingston ME Group (www.richmondandkingstonmegroup.org.uk), and is reproduced with permission.
It is in PDF (Portable Document Format) and you will need a reader to view it or print it.
If you use Microsoft Windows on your computer then you will need to have installed Reader from https://get.adobe.com/reader/
On an iPad or a Mac you can use Preview. If you use Linux then you will have Document Reader installed.
URGENT appeal for new Trustees!
In the last 12-18 months the charity has lost 5 long-serving Trustees due to a combination of ill-health, personal circumstances and well-deserved retirement from charity duties.
Our Trustees (who are also the Committee members) have worked tirelessly for many years – decades in most cases – and we are now in need of new Trustees to join us if we are to continue our work. The charity has been advertising for new Trustees but our need is now urgent.
If you, a family member or friend would be interested or would like more information about becoming a Trustee for the Dorset ME Support Group please contact the Administrator for more details and we will be in touch.
We are very aware that there are so many worthy causes looking for help these days and also that everyone is very busy with the demands of modern life (especially people and their families dealing with the terrible impact of ME/CFS) but we desperately need your help.
If we are unable to recruit several new Trustees there is a real danger that we will not have the required number of Trustees to be able to manage the charity and perform all the necessary duties (both in practical terms and to comply with our constitution) and, consequently, the charity will unfortunately cease to exist.
Please spread the word.
Dorset ME Support Group
The Ten Commandments for Reducing Stress!
|i.||Thou shalt not be perfect or try to be|
|ii.||Thou shalt not try to be all things to all people|
|iii.||Thou shalt leave things undone that ought to be done|
|iv.||Thou shalt not spread thyself to thin|
|v.||Thou shalt learn to say ‘no’|
|vi.||Thou shalt schedule time for thyself, and for thy supporting network|
|vii.||Thou shalt switch off and do nothing regularly|
|viii.||Thou shalt be boring, untidy, inelegant and unattractive at times|
|ix.||Thou shalt not even feel guilty|
|x.||Thou shalt not be thine own worst enemy, but thine own best friend|
from Sarah Myhill’s book ‘CFS – it’s mitochondria, not hypochondria’
Highcliffe Castle Fair: £178
The Highcliffe Castle Christmas Charity Fair was held on Sunday November 20th
We had a stall there and we raised £178 and made two Friends of DMESG! Thank you to the helpers and to those who sent donations of Christmas gifts and white elephant items.
Benefits Advice in Dorset
Personal Independent Payments (PIP)
This has replaced DLA (Disabled Living Allowance). Personal Independence Payment (PIP) is a tax-free benefit for disabled people who need help with mobility or care costs. You can claim if you are under 16, or were born after 8 April 1948 and make a claim in the same year you stopped receiving DLA.
If you’re not eligible, and you’re aged 65 or older and haven’t received DLA or Personal Independence Payment (PIP) in the last year, you may be able to claim Attendance Allowance instead.
If you’re already claiming, you’ll continue to get DLA until the Department for Work and Pensions (DWP) writes to tell you when your DLA will end and invites you to apply for Personal Independence Payment (PIP).
Employment and Support Allowance (ESA)
This is financial support for people who cannot work because of illness or disability. It also provides personalised help so that you can work if you’re able to. You can apply for ESA if you’re employed, self-employed or unemployed. You might be transferred to ESA if you’ve been claiming other benefits like Income Support or Incapacity Benefit. You must have a Work Capability Assessment while your ESA claim is being assessed. This is to see to what extent your illness or disability affects your ability to work. You’ll then be placed in one of 2 groups if you’re entitled to ESA: work-related activity group, where you’ll have regular interviews with an adviser or a support group, where you don’t have interviews.
Attendance Allowance helps pay for your personal care if you’re older or disabled.
Other benefits include: Pension Credit (eg discounts on water rates – individual applications should be made to relevant companies), Housing Benefit, Universal Credit
In Dorset we know of the following organisations that offer advice and help.
Recommended for those aged under 50:
CAB (Citizens Advice Bureau)
They offer Free, Confidential, Impartial, and Independent Advice both online and face to face (www.dorsetforyou.gov.uk/citizens-advice-bureau ).
- Bridport and District CAB: 45 South Street, Bridport DT6 3NY tel: 03442 451 291
- Christchurch CAB: 2 Sopers Lane, Christchurch BH23 1JG tel: 03442 451 291
- Dorchester and District CAB: 1 Acland Road, Dorchester DT1 1JW tel: 03442 451 29 (also offering advice sessions in some villages such as Maiden Newton, Cerne Abbas, Bere Regis, Puddletown and Crossways).
- East Dorset Wimborne office: Hanham Road, Wimborne BH21 1AS tel: 03442 451 291 (also offering advice in Cranborne and Verwood GP surgeries, Verwood Library, and Heatherlands Community Centre).
- Ferndown office: 1A Princes Court, Princes Road, Ferndown BH22 9JG
- North Dorset CAB: 4-7 Newbury Court, High St, Gillingham SP8 4QX tel: 03442 451 291 (also offering advice at Blandford, Shaftesbury, and Sturminster Newton)
- Sherborne CAB: Manor House, Newland, Sherborne, Dorset DT9 3JL tel: 03442 451 291
- Purbeck CAB: Mill Lane, Wareham, BH20 4RA tel: 03442 451 291
- Weymouth and Portland CAB: Mulberry Terrace, Great George Street, Weymouth DT4 8NQ tel: 03442 451 291
Recommended for those aged 50+:
Age UK (previously known as Age Concern)
Information and advice on claiming benefits and entitlements, including pension credit, attendance allowance, council tax benefit and carers allowance. They have contacts in Lytchett Minster and Upton (tel: 01202 622744), Bournemouth (tel: 01202 530530), Blandford Forum (tel: 01258 458250), Dorchester (tel: 01305 269444), Christchurch (tel: 01202 488311) (www.ageuk.org.uk/money-matters/claiming-benefits )
For all ages:
Action for ME
Free Welfare Advice and Support Service open to all, every weekday 10:30am to 2pm Telephone support given on 0800 138 6544 (this number is free to call from landlines and some mobile phone networks). However, this welcome service is not coping with the current demand.
For children and young people: there is lots of useful advice and links on their “https://www.actionforme.org.uk/children-and-young-people/introduction” page.
DiverseAbility (previously known as Disability Wessex and now based in Parkstone)
Do you need help to fill out an application form to apply for or renew a disability or sickness benefit?
Do you need help to challenge a disability benefit decision that you believe is wrong?
The Advice Team can provide support with personal independent payments, employment and support allowance, attendance allowance, disability living allowance and carer’s allowance. The service is also on hand to talk with clients and give advice when going through the assessment process, for both adults and children with a disability or heath condition. (www.diverseabilities.org.uk/advice/disabilitybenefits or tel: 0300 330 5514).
Access Dorset (bases in Bournemouth and Weymouth)
Tel 01202 430113 http://www.accessdorset.org.uk/dial-information-and-advice/
They give Benefits Information, Advice and Crisis Advocacy. Some of the staff have first-hand knowledge of DMESG and have helped our members in the past.
Additional help and advice:
Disability Benefits Helpline
Tel 0800 88 22 00 Provides information and advice about disability and carers benefits, their qualifying conditions and procedures. They can provide application forms, advice about form-filling and information about other organisations that may be able to help.
This site pulls together a huge amount of information about public services, and the section on Disability Living Allowance is a good place to start.
Contact a Family
This is a charity for families with disabled children. They have two welfare rights specialists who can give advice on DLA and other benefits. Telephone the free helpline on 0808 808 3555.
Benefits and Work
Provides information and links about welfare benefits and employment law for people with long-term physical or mental health conditions, their carers and support workers. Basic info about PIP, DLA and ESA (and regular Email updates) is free. To get the most detailed guides to the qualifying criteria for ESA, PIP and PIP, plus step-by-step guide to the appeals process, then you need to join. Costs about £16 a year but well worth it, according to one DMESG member. www.benefitsandwork.co.uk 8-10 Queen Street, Seaton, Devon EX12 2NY
Dial is an independent network of local disability information and advice services run by and for disabled people. To find your local office, call the national helpline number 01302 310123 or visit the website for details http://www.scope.org.uk/dial
Disabled Persons Tax Credit
The information line can give advice about claims, form-filling, estimates of entitlement and help with queries about existing claims. 0345 300 3900
Disability Rights UK
There is a useful section on their website offering help if you are claiming benefits. You can write to them at 12 City Forum, 250 City Road, London, EC1V 8AF or email: firstname.lastname@example.org
General guidance providers include: Citizens Advice, Advice UK, Age UK, and Law Centres. Macmillan provides assistance for cancer sufferers and their families, Gingerbread helps single parents, while Shelter advises on housing issues.
Scope/Dial Network helps those with disabilities with benefits enquiries. IncomeMAX, Turn2us, Disability Rights UK, all offer internet resources. Information on claiming is available from Gov.uk, the Department for Work and Pensions, HM Revenue & Customs, and your local council.
You could also try speaking to the relevant government departments that administer the benefits system.
One last point – do not be afraid to seek a second opinion.
(Department for Work and Pensions: Benefit GOV.UK)
Optimum Self-Care Quiz
Here’s a simple quiz to get you thinking about things that you can do to look after yourself better.
Many of us with CFS/ME forget, or never learned, to do this well. This quiz applies to everyone, so some things may not always be possible for you, but all are proven aids to well-being, and most can be done in small steps.
Give yourself a score to see how much you are doing now, and check it with the possible totals. You can return to the quiz occasionally to see how you’re doing, and to remind yourself of other possibilities.
Never-0 Rarely-1 Sometimes-2 Consistently and regularly-3
» Eat regularly (breakfast, lunch, dinner, healthy snacks)
» Eat healthy foods
» Drink plenty of water
» Undertake physical activity/exercise regularly, but to your personal baseline
» Use preventative medical, dental and psychological care
» Use medical care when needed
» Take time off work when ill
» Receive massages
» Do enjoyable, physically active things sometimes
» Take time to be sexual
» Get enough sleep
» Wear clothes you like
» Take vacations
» Engage in personal therapy to resolve past and present traumatic stress
» Learn to be less anxious
» Maintain self-respect
» Make time away from demands of life or others
» Write in a journal
» Read literature for pleasure
» Do something at which you are not an expert or not in charge
» Let others know different aspects of you
» Be curious
» Say no to extra responsibilities
» Decrease stress in your life
» Connect with others whose company you enjoy
» Stay in contact with the people that matter in your life
» Play with animals
» Play with children
» Identify & seek comforting activities, people, relationships and places
» Express anger via social action (letters to media, donations, gatherings)
» Spend time in nature
» Find your spiritual connection or community
» Cherish optimism and hope
» Be open to not knowing
» Spend time with children/pets
» Be open to inspiration
» Cultivate gratitude
» Listen to music
» Engage in creative activity
» Practise Yoga
» Try liturgical dance or other spiritual body movement
» Notice experiences of awe
» Be mindful of what is happening in your body and around you
»Make your own meanings from difficult phases of life
» Practice forgiveness & reconciliation
» Seek truth
And, for those who are still able to work, or are returning to work:
» Take time to eat lunch away from your desk or work space
» Take time to connect with your co-workers
» Make quiet time to allow yourself to complete tasks
» Identify projects or tasks that are exciting or rewarding
» Set yourself limits with clients and colleagues
» Balance your workload so that you are not overwhelmed
» Arrange your workspace so that it is comfortable and comforting
» Have regular supervision and consultation to guide you
» Negotiate for your needs (benefits, pay, well-being days)
» Join a peer or individual support group
Grand Total 183
How are you doing?
Have you any tips that have helped you with your own self-care and that you think might help other members?
Are there any listed here that you find particularly difficult?
We’ll include tips in our future newsletters, along with advice and articles on how to implement them, so please send them to:
New Treasurer Required!
Our Treasurer and trustee, Ian Jones, will be leaving us in April 2017.
Ian has been Honorary Treasurer of the Group since 2002, following his retirement from Barclays International.
He has made significant contribution by keeping our Group in good financial order for all these years and he will be sadly missed.
We hope to recruit a new trustee Treasurer very soon, to work with Ian initially and then take over the reins next year.
If you or anyone you know may be interested in taking on this role please contact our Administrator, Carol Dadds, at:
Report on 2016 Annual Medical Lecture
Our annual medical lecture was held on May 28th 2016 at Dumpton School, nr Wimborne.
Helen Lynam, Director of Nutrition at the Optimum Health Clinic in London spoke to us about ‘Cutting Through the Myths & Complexities of CFS/ME’. She explained how CFS/ME is caused by the combination of a number of predisposing factors. These include personality subtypes, (e.g. Achiever Type), and nutritional subtypes, (e.g. Immune Type). It was also explained how CFS/ME affects multiple systems in the body.
Helen showed expertise, and a real understanding of the problems facing sufferers. She stressed that it was vital that any treatment should be introduced at the right stage of the condition, if it is to stand a chance of working. The 3 main stages outlined were:
1. Crash Stage: sleeping a lot, with very little physical, mental or emotional capacity. There may be burnout in the nervous system, mitochondria, adrenals, gastro-intestinal secretions and possibly the detoxification system.
2. Tired and Wired Stage: experiencing pain, physical fatigue, poor sleep, brain symptoms, digestive symptoms, flu symptoms, etc. The mind can feel very busy whilst the body is exhausted and it is very hard to feel relaxed.
3. Reintegration Stage: energy and understanding of the condition definitely increasing with fewer overall symptoms. In this stage it is easy to get stuck in boom (doing too much on a good day) and bust (suffering from having done too much).
Helen’s opinion was that it is only when Stage 3 has been reached, that Graded Exercise Therapy (GET) might be effective. However, Neuro-Linguistic Programming (NLP) and Life Style Management, including nutritional supplements and the avoidance of certain foods, may be effective at all 3 stages.
Helen was very interested to hear about our own NHS CFS/ME clinic at Wareham Hospital.