All the newest items and links are announced here, the newest at the top of the list.
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2010
March
See January's entry. Here is the result of Sian Jeffery's research.
February
An American site but has lots of help and advice for people on (or in need of) disability benefits
January
Sian Jeffery is a third year student of Nutritional Science at the CNELM www.cnelm.co.uk.
One of his assignments is to write a report on how sufferers of fibromyalgia view nutritional strategies as part of the management of their condition. He would appreciate your help in this by filling in the form that you can find here.
Could you please fill it in using whatever marking system you like; colour your answers, highlight or underline them, as ‘ringing’ might be difficult on the computer. When it is complete please email it to sian-jeffery@ac.cnelm.co.uk Thank you for your help.
Disability Direct is an online directory and disability website designed to help you find just the right information, support or equipment you need to live your life.
The Worthing group proposes to issue a newsletter each month. The icon is the door of the church where their meetings are held.
Interactive training lecture for medical professionals but of interest to patients!
The National Fibromyalgia Association has launched “Make Fibromyalgia Visible” its newest awareness and information campaign which will bring hope to those suffering and isolated by FM.
2009
December
Some Christmas Cheer
Powerpoint animation Joyeux Noel
Powerpoint tour of Quebec at Christmas
This is a summary of the talk given by Dr Nina Bailey on 18th Nov on The role of nutrition in Fibromyalgia.
November
See important notice about this
Monday 21st December - 12.30 for 1pm at the David Lloyd Centre, Romany Road, Worthing BN13 3DL
Ferring Baptist Church, Greystoke Road, Ferring, West Sussex, BN12 5JL on 3rd Tuesday of each month beginning in January 2010, first meeting date will be Tuesday 19th January.
Buy VegEPA at a special price per pot whilst donating 50p to Research for Life at the same time! Enter AU7CKSVG in the Promotional Code box.
October
AONM is an international interdisciplinary forum for the advancement of nutritional medicine.
23rd-26th April 2010 at Southdowns Holidays Village, Bracklesham Bay, (close to East/West Wittering),
Chichester, West Sussex PO20 8JE
More info here.
ME patients in this area are invited to take this survey.
The award winning Elvis impersonator Marshall King is at the Winter Garden, Eastbourne on Saturday 7 November, for a night of pure Rock ‘n’ Roll magic. See details in link above.
September
This survey will help in the creation of a unique device designed specifically for people with FM in order to provide you with a more comfortable and restful sleep. Return by Oct 25th.
'Research For Life' report - at the bottom of the page.
At Age Concern, Crawley, Sunday Oct 18th - £5 for 2 courses.
April 23rd-26th at Bracklesham Bay near Chichester.
August
Caroline Hinkes reports on the progress of the members of her group in their response to various treatments.
Teaching comes easy to this fashion major. It's everything else that's hard.
A moving story of courage and perseverance. On our Spirit & Inspiration page.
'Research For Life', to raise awareness and funds for a variety of conditions including fibromyalgia.
A new way of displaying meetings. A calendar with pop-up information and maps!
extending an open invitation to join her groups any time for lunch (Chichester/Horndean) or just coffee.
Protect your AA and DLA benefits NOW before it is too late.
See also this message from FaceBook and the Benefits page updated..
Survey carried out at Horsham Meeting on 3rd August. Anyone else wishing to complete it may do so. If filling it out on a computer it will be necessary to delete some lines, but I have left them in in case anyone wishes to print first, fill out by hand and submit by post. If submitting by email, please add the completed form as an attachment.
Either way please return to me. By email: Webmistress@fms-sas.co.uk
OR by post to Mrs Stella Bernardi, 42, Woodlands Way, Southwater, West Sussex RH13 9HZ
There will not be a meeting in September as several people are going to be away but it is hoped to arrange something in October. Please check the Meetings page for an announcement.
A new book about FMS/CFS sufferers.
July
Or you can find it here
Coffee Meet-Up
Friday 14th August at The Swiss Cottage in Shoreham from 11:30am. If you don’t live too far away, why not join the group?
Keep an eye on this page to check where and when meetings are taking place. There can be frequent changes! New Self Help group at Horley for Crawley & E.Surrey. New "Tea at 3" group at St.Leonards for Hastings/Bexhill.
The jump was on 25th July. See the report.
June
This will be held on Saturday 22 August 2009. It will be in the outer Atrium, in front of Tesco's, Marks & Spencer and McDonalds so it will be seen by thousands of shoppers.
Sybille Ulinski explains the tensing and relaxing of muscle groups resulting in inner stabilisation.
Celebrating six years of service and support for the fibromyalgia community.
Update of classes near the end of the Therapeutic Classes page. Other updates on this page too.
You are invited to become a member and receive reliable information on the latest in treatments, research, and coping advice from experts around the world.
Open Garden
Chris and Richard Reynolds, two plantaholics, are opening their garden,
(35 Wrights Close, South Wonston, SO21 3HD) on
Sunday June 28th , 2.30 – 5.30 pm.
£2 Entrance, Wheelchair access. Refreshments available, plants for sale.
In aid of the Red Cross, Help for Heroes, and Fibromyalgia research.
Even if you are not a garden lover, come and enjoy stunning views and a tranquil location.
Coffee meet-up at Lancing
The Sussex Potter in North Lancing on Friday 26th June from 11:30am. This venue is really nice and gives us an opportunity to sit outside if the weather permits.
Full details of visit in link above (.rtf document).
“To compare the extent to which the national healthcare systems of Europe take the patient and the consumer into consideration in 2009”.
Complementary & Alternative Medicine information service for the public.
Survey about the experiences over the last two years of those affected by the Chronic Fatigue Syndrome.
May
Group launch 1st June Atrium 1, Guys Hospital, London Bridge, London. See details in link above. (.rtf) and here.
Is there a fibromyalgia personality?
Myofascial Release (Muscle - Fascia - Release) is used for the release of fascia which has become stuck, hardened and dehydrated. Restricted fascia and soft tissues lead to often undiagnosed pain, exhaustion and immune system dysfunctions.
Come on by and join us there.
Fibromyalgia Internet Based Research Online, (F.I.B.R.O) Your help needed! Please participate whether you have fibro or not!
Return visit on 24th June. See details on above link.
April
Independence at Home is a national charity that helps improve independence, comfort, safety, dignity and quality of life for people with long-term illness and disability by helping towards the cost of adaptations, equipment or other things that are not available from public funds.
World M.E. & F.M. Prayer and Meditation Day
Scheduled for 12 May, 12 noon – 12.30 ~ marking International Fibromyalgia Awareness Day and International M.E. Awareness Day. This event is in addition to the World M.E. & F.M. Prayer & Meditation Day scheduled for noon on Monday 4 May; the regular monthly event which takes place on the first Monday of each month.
Regular participants of the multi-faith prayer and meditation link, will no doubt be familiar with the origins & purpose of the event, but for newcomers, further information can be found at:
World ME-FM Prayer and Meditation Day
Hove Lawns, 25th July 11am. Please support them. See also justgiving.com/fmsjump
Togs4specialsprogs create custom made clothing and accessories for Babies and Children with special needs.
An innovative fundraising scheme that reclaims charges from many existing investment, pension and insurance policies. See the movie and read full details in above link.
The only UK web-site totally dedicated to providing free information on routes that are suitable for wheelchair users throughout the UK.
A wheelchair friendly walk in bluebell woods.
Jaqui Mayes carried out research in 2008 to try and establish links between food intake and fibromyalgia. The results are to be found on her site above and is also available here.
Carli Weir
is bravely going to bungee jump to help raise funds for us! The date of the jump will be 25 July. Please sponsor her. Watch this space for more information.
February
Sign the Petition against Codex Alimentarius unless you want to lose currently freely available herb/vitamin/mineral food supplements.
LINk (Local Involvement Network) is an organisation which promotes Your Voice on Local Health and Social Care.
January
Beautiful story - received by email and adapted.... (below the links on the Spirit & Inspiration page.)
2008
See details needed.
See flier for full details
Gentle Yoga at Merstham
New Gentle Yoga classes in Merstham near Redhill starting on November 3rd. 11.00 - 12.00 each Monday.
See flier here.
Fibromyalgia Awareness press releases.
Janet Boniface is concerned about the credit crunch affecting our charity
Tonya Ashby's Story about coping with fibromyalgia
2 New Menus
Links to sites about PAIN
Sites with Forums to discuss PAIN
See their website too.
If you are a Carer, this is for you.
World ME & FM Prayer and Meditation Day - The event takes place on the first Monday of every month between 12 noon and 12.30, or at any other time during this day if noon is unsuitable for you.
Pension Service and the Disability and Carers Service join up to form one new agency.
New Award (at the bottom of the page)
The Council wishes to consider the views of residents and stakeholder groups and to do this has commissioned Research For Today Ltd (RFT) to undertake a a special web questionnaire for members of EAVS about the Council's service priorities. If you live in the Eastbourne area please click the link above to access the questionnaire
Thursday, August 9, 2007, Press Release
New Nationwide Surveys Demonstrate Need for More Education, Resources for “Invisible” Pain Condition Affecting More Than Six Million Americans
Mike Hesketh invites you to participate in his CFS/FMS survey and feature in his book.
Mike's Letter of invitation
Mike's Survey
Research by the University of Surrey
1. Exploring the role of sleep in Fibromyalgia Syndrome
2. Does mindfulness improve sleep quality and quality of life in patients with fibromyalgia?
Power Point Presentations:
1. FMS What is it?
2. FMS SAS Overview of Support Group's activities
3. Juvenile Primary Fibromyalgia
Buy-at the FMS SAS on-line shop.
Research into Fibro & Nutrition
Disability Digest
Disability Direct
Worthing Fibro Newsletter 1
Fibromyalgia - the Patient who hurts too much
Make Fibromyalgia Visible
Dr Nina Bailey's talk about Nutrition and Fibromyalgia
URGENT - Worthing Group Photo
Worthing Christmas Lunch
Igennus VegEPA Research for Life Scheme
Report of Annual General Meeting - Thursday 15th October.
Academy of Nutritional Medicine.
Fibromyalgia Conference and Pamper Weekend
Richmond & Kingston ME Survey
Elvis Concert, Eastbourne
Sleep Survey
Charity Launch Report
Crawley Great Sunday Lunch
Tried & Tested Report - Summer 09
The Lessons of Lindsay
Calendar
An Open letter from Jeanne Hambleton
No More Benefits Cuts campaign
"ignorance is bliss" by Michael Hesketh
Latest NFA Fibromyalgia News and Resources
Support Group Meetings
Jumping for Fibromyalgia
July Fibro news from FibroAction
First monthly Meeting Report
Holmbush Music Gig
6th Birthday Celebration
ME/CFS/FM Yoga classes in Kent and Sussex
Fibromyalgia Network
Prof Puri's visit to Eastbourne
Health Consumer Powerhouse
Natural Therapy Advice
Myofascial Release Clinic
We have a new Forum!
AFFTER research
Report on Car Boot Sale 12th April 2009
New National Compact to be launched in November 2009
Independence at Home
Carli and friends' Bungee Jump
Togs 4 Special Sprogs
LINks announces Stewardship Group members[PDF]
CleverSquirrel is launched
Walks with Wheelchairs
The Bluebell Walk, Polegate East Sussex
Chronic Pain Research Needs You!
The Optimum Health Clinic - talk at Brighton - April 16th 2009
Saxon Weald present Group with £850 - 23rd March 2009
Anahata Health Clinic, special rates
reMEmber - Self-management course & ME week event
Nutritional Therapy
101 things to do in 1001 days - Target setting by Linda Miles