FMSSAS eNews 11.03.26

Hello again

Monday was officially the first day of spring, and how pleasantly spring-like it was.  Quite a tonic!  In fact it has been a pretty good week.

Sheila Mayo is still in hospital but her daughter told me that she hopes to be home soon with a permanent live-in carer.  Sheila’s house is being decluttered to make room for hospital equipment.  There are a number of pictures done by members of the Art Class that Sheila used to teach.  If you were a member of that group and would like to reclaim your artwork, please let me know.  Otherwise it will sadly be thrown away or at least recycled.

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

WORDz FOR THE WEEK

13.  The true measure of a man is how he treats someone who can do him absolutely no good.

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Our new Blogspot

Has anyone managed to access the blogspot?  I’m not sure how easy it is for others to get into!  If you do, please post a comment so I can see how you are doing.  Meanwhile I will continue to send eNews as email.

http://fmssas.enews.blogspot.com/

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Reigate and Banstead Voluntary Service

Newsletter, March 2011

http://www.rbcvs.org.uk/images/newsletter_march2011.pdf

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Fibromyalgia Conference, 8^th-11^th April 2011

Last minute bookings!  If you didn’t get a-round-tuit before, it’s not too late.  Contact Jeanne Hambleton immediately if you would like to attend fibrowhat@me.com.  She has a few places left and is anxious that the maximum number of people possible will be able to benefit from the conference.  It will be an action packed weekend.  See her latest news flash here

http://dl.dropbox.com/u/17459523/110326eNews_Fibro_What.doc

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

How are you managing the stress of everyday life?

Rebecca Richmond offers some advice.

https://rebeccarichmond.infusionsoft.com/he/16944/863e0bf2c69b333da661a7bbce7e4950

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

'Loose Joints' Highly Associated with Migraine, ME, CFS, FMS etc

Most people see ‘double-jointedness’ as a common, harmless condition. But in people with joint hypermobility syndrome (JHS) - a condition where joints easily move beyond their normal range - it could be the precursor and cause of migraines and other problems, reports Vincent Martin, MD, a headache expert at University of Cincinnati Health Center who himself has hypermobile joints and migraine.

http://www.prohealth.com/library/showarticle.cfm?libid=16026

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

 GP consortia and the health transition period

 This document provides a summary of the main developments in relation to GP consortia as at February 2011. The information is correct at the time of writing but, with changes happening so quickly, the information could be superseded. Updates to this document will therefore be provided when necessary.

http://www.raise-networks.org.uk/media/documents/1299845699---gpconsortiaandthetransitionperiod.pdf

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Fibromyalgia: An Afferent Processing Disorder Leading to a Complex Pain Generalized Syndrome

Pain Physician: March/April 2011 - A comprehensive history and overview of fibromyalgia.

http://webcache.googleusercontent.com/search?q=cache:SG7XfatbNYUJ:www.painphysicianjournal.com/2011/march/2011-14-E217-E245.pdf+afferent+processing+disorder&cd=3&hl=en&ct=clnk&gl=us&source=www.google.com

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

2011 Heart and Soul Grant Competition

Deadline 28^th March, so put your skates on and get your creative juices running!  Submit an original four to eight-line poem that reflects the work and/or mission of the applicant organisation.  (FMSSAS?!)

http://www.fundraising.co.uk/news/2011/03/20/apply-10000-grant-poem

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Debbie Stevens Wellbeing or Girls’ Nights In Events.

Congratulatins to Debbie who tells us -:  We are part of the ‘best of’ Worthing and there are 400 other best of’s all over the UK, each area has an A-Z listing of the best trades. They ran a competition to find the best loved traders, and I have just won the ‘best loved’ Alternative therapist in the UK.  See Debbie’s Girls’ Nights In update

http://www.debbiestevenswellbeing.co.uk/content/girlsnightsinevents

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Don’t forget to put your clocks forward an hour tonight!  Go to bed early in order to get your beauty sleep!

Kindest regards

Stella

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.

Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.

I also include various awareness and local issues as well as general health considerations.

FMSSAS eNews 11.03.19

Hello Everyone

Welcome to our Blogspot, a new home for FMSSAS eNewsletters.  I already posted last week’s as a trial.  We’ll have to see how things go, but I hope you like it. 

Jo Fisher and I attended Sally Ann Blair’s funeral on Thursday and there was another fibromite there – from Wales.  Sal’s varied nursing career had been cut short by Fibromyalgia and she had spent her final years in retirement in Selsey. 

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

WORDz FOR THE WEEK

12. Every passing minute is another chance to turn it all around.

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

NFA President’s Newsletter, March 2011

Dramatic changes in the National Fibromyalgia Association’s organisation.

http://dl.dropbox.com/u/17459523/110319eNews_NFA_News.doc

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Fears and Fibromyalgia - The connection

Rebecca Richmond says – “If you want to use the techniques I used to improve my self-esteem and expand my comfort zone they are available in my "Forget Fibromyalgia Accelerated Recovery Programme."

https://rebeccarichmond.infusionsoft.com/he/14760/36c0040b9eb136e2adfd8a379466deb2

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Mounting Pathophysiologic Evidence to Link Fibromyalgia with Other Common Chronic Pain Disorders

‘A shared paradigm would be useful in promoting cross-fertilization between researchers. Scientists and clinicians could most effectively forward the understanding and treatment of fibromyalgia and other common chronic pain disorders through an appreciation of their shared pathophysiology.’

A long somewhat technical article but worthy of mention.

http://www.ukfibromyalgia.com/newsletter-articles/2011-March.html

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

The March for the Alternative Cuts

The March for the Alternative is taking place in central London on Saturday 26 March. The march will form up from 11am on the Victoria Embankment between Waterloo and Blackfriars bridges and proceed through central London until reaching Hyde Park, where the rally will start from around 1.30pm.

http://media.causes.com/ribbon/1024231

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Disability benefit cuts 'could breach human rights law'

New assessment tests are planned to help the government decide where to make cuts in disability benefits.  Ministers are also consulting on plans to replace the Disability Living Allowance with a new Personal Independence Payment.

http://www.bbc.co.uk/news/uk-12141790?utm_source=twitterfeed&utm_medium=twitter

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Keep the UK Disability Living Allowance!

Now you can put your views to Parliament!   MPs want your views for when they discuss DLA changes.  You can email your submission to scrutiny@parliament.uk  now.
Your submission should be attached to your email in a Word document and include:
name, address, telephone number and email address, a short introduction about yourself
the date of submission , a summary of your main points, numbered paragraphs
Your submission should be no longer than 3000 words.

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Now you can put your views to Parliament!  through Facebook

This allowance is essential if the disabled are to enjoy any quality of life.

http://www.causes.com/causes/567050-keep-the-uk-disability-living-allowance?m=fab5f43a

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Fundraising for FMSSAS

As you probably know, we don’t make any charges for membership of FMSSAS, nor for eNews.  However, even though the charity is run entirely by unpaid volunteers it does have some expenses and we are currently living off our reserves.  You could help us with very little effort.  There are lots of ways available on-line.  You can see here how money has been raised in the past www.fms-sas.co.uk/fmsfunding.html, [If you would like to organise a fundraising event we would be pleased to hear about it.] and what could also be the way forward for the future www.fms-sas,co,uk/fmsfundraising.html and through online shopping www.fms-sas.co.uk/fmssale/html

We now have a new one, see below:-

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Sell Items on eBay to benefit our charity

http://donations.ebay.co.uk/charity/charity.jsp?NP_ID=44744

You can do this through MissionFish

http://www.missionfish.org.uk/whats-new/2010/articles/uk_051310-new-feature-favourite-charity.html  Thank you in anticipation. 

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

The Patient Experience from The Patients Voice

Welcome to our latest guest post on Fibromyalgia from Julie Wendell.  She tells her story of her developing symptoms and diagnosis with Fibromyalgia.  Please feel free to use the comments box to comment on Julie’s story or tell your own FMS/CFS story.

http://www.patient-experience.com/index.php/fibromyalgia-julie-wendell-story/

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Crippen Cartoons  - Cartoons at the cutting edge of disability

Disabilities looked at with humour and a knock at officialdom!

http://crippencartoons.wordpress.com/

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

So I will sign off for another week and wish you all well.  I wish I was!  I’ve gone down with a horrendous cold.  At least I hope it’s nothing worse.

Bye for now

Stella

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.

Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.

I also include various awareness and local issues as well as general health considerations.

FMSSAS eNews 11.03.12

Hello Fibro Friends

I am sorry to announce the death of Sally Ann Blair who lived near Chichester and used to attend the Worthing meetings, which is where I met her, but that was several years ago.  Her funeral will take place at Chichester Crematorium on Thursday 17^th March at 1.30pm.  If anyone who knew her would like to attend do feel you can do so.

This is another bumper bundle for you this week.  Lots of info to get your teeth into!

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

WORDz FOR THE WEEK

11.  Accept that some days you’re the pigeon, and some days you’re the statue.

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

NFA ‘s New FM-Chronic Pain Report

“Toward the end of 2010, the NFA sent out a notification about a new type of complimentary publication that will focus on FM scientific research and how study outcome data might effect new treatment options and better resources.  Please click onto the following link to view the first issue of the FM-Chronic Pain News Report.  We hope you will find it interesting and helpful.”

http://www.nfmcpa.org/media/newsletters/issue1/

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

P.A.N.D.O.R.A. – (Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research and Advocacy)

Our mission is to address and alleviate many of the issues that affect the quality of life of persons who are diagnosed with chronic fatigue syndrome (CFS), (also known as chronic fatigue immune deficiency syndrome (CFIDS) in the U.S., and abroad also known as M.E. or ME; fibromyalgia syndrome (FMS), Gulf War illnesses (GWI), multiple chemical sensitivities (MCS) or environmental illnesses (EI) and persistent Lyme disease (PLD)

http://www.pandoranet.info/

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

New Support Group for Camberley, Surrey

Amanda Sharp is organising a Support Group, meeting at Camberley Adult Education Centre Cafeteria.  If you live anywhere near do contact Amanda for precise details camberleyndistrictfmsg@gmail.com  or Tel: 01276 63595.  Thanks go to Amanda for organising this.

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Ellwood Cottages, holiday accommodation for the disabled

“We are prompted to contact you, to let your members living with FM know about our self catering holiday accommodation. The cottages, heated splash pool, recreation room, therapy room and garden provide a quiet, relaxing and stress free environment have that unique combination of not only accessibility but luxury and practicality. Guests can be assured of a warm welcome, comfortable accommodation and a beautiful location.”

http://www.ellwoodcottages.co.uk/

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Fibromyalgia Global Impact Survey, Advancing Understanding, Aiding Diagnosis

In January 2008, the European Network of Fibromyalgia Associations (ENFA) and Pfizer Inc part­nered to develop the Fibromyalgia Global Impact Survey among fibromyalgia patients and among physicians to advance understanding and aid diagnosis of fibromyalgia.  The results are here

http://www.enfa-europe.eu/assets/downloads/global.pdf

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Give as You Live now available for Firefox users

Previously only available for Internet Explorer users, the app. is now ready for use by Firefox browser users.  You can download it from here

http://www.giveasyouliveblog.com/2011/03/everyclick-launches-give-as-you-live-for-firefox/?f=EMAIL_1103FF 

Make sure you choose Fibromyalgia Support Group for Surrey and Sussex as your charity, then when you shop online you will be helping FMSSAS, without even realising it!

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

EBook Beating the Fibro Bully by Amy Waterman

Fibromyalgia sucks.  There's no two ways about it.  It's no fun if you have it, and it's no fun if someone you love has it.  Even worse, the thought of having to deal with fibromyalgia for the rest of your life is just ... well, disheartening.  That's where this website - and a free e-book - comes in.

www.SurvivingFibromyalgia.com

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Using Cognitive Behavioural Therapy: A Success Story - By James Thomas

‘CBT is a combination of two therapies: Cognitive Therapy and Behavioural Therapy. The former seems to be a kind of limited psychiatry concerned mostly with positive thinking, and the latter modifies the behaviour of the patient. CBT can be, and has been, used for many illnesses, for example depression, and cancer and is not a cure for either them or ME, but instead an illness/lifestyle management regime.’

http://www.cfidsselfhelp.org/library/using-cbt-a-success-story

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

PACE Trial Shows Two Forms of Pacing More Effective Than Third Type - By Bruce Campbell

‘The Lancet article reporting the PACE research said that Cognitive Behavior Therapy (CBT) and graded exercise were shown to be more effective than adaptive pacing. While I share many of the criticisms that others have made of the trial, I was curious about what CBT and GET meant in the project: what did patients actually do?’

http://www.cfidsselfhelp.org/library/pace-trial-shows-two-forms-pacing-more-effective-third-type

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

FibroInnovations

Watch the video then explore the rest of the site.  Pity it’s in the USA!

http://www.fibroinnovations.org/index.html

NFA includes FibroInnovations it its new FM-Chronic Pain News Report

http://fibroinnovations.org/docs/FM_Chronic_Pain_Newsletter.pdf which includes lots more info and research reports as well.

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Diagnostic Criteria

From 1990 and Tender points to 2010 and SS, WPI and all that.

http://chronicfatigue.about.com/od/diagnosingfmscfs/a/diagnosingfibro.htm

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Strictly Health and Wellbeing - Wednesday 23^rd March - Billingshurst Village Hall

If you are interested in attending please contact Sharon Westcott at Arunwide CVS on 01243 840305 or e-mail admin@cvs-arunwide.org.uk  Full details here:-

http://dl.dropbox.com/u/17459523/110323_Health_and_Wellbeing_flyer.pdf

http://dl.dropbox.com/u/17459523/110323_Health_and_Wellbeing_programme.doc

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

FibroWHYalgia:

Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness [Paperback]

http://www.fibrowhyalgia.com/  Also available on Amazon.co.uk

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Paul Hyde’s Hypnotherapy CDs

Email received gives details of Paul’s CDs.  He considers they may help FMS sufferers.

http://dl.dropbox.com/u/17459523/110312eNews_Paul_Hyde_hypnotherapy.doc

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

East Sussex LINk Newsletter Edition 26 (March 2011)

http://files.thecountylink.net/newslettermarch2011.pdf

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

Horsham Area Council for Voluntary Service (HACVS) Bulletins

http://www.hacvs.org/E-Bulletins.htm

^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^+^

I hope you enjoyed your pancakes on Tuesday!  The weather seems to be gradually improving, and with it, hopefully, the return of the feel-good-factor that is missing during the winter months.  Enough for now. 

Best of wishes to all of you.  Keep in touch.

Stella

N.B. I would like to point out to you all that the information in my eNewsletters does not necessarily infer endorsement by the charity Fibromyalgia Support for Surrey & Sussex.   Any advice or recommendation of a medical or legal nature must always be discussed with a qualified professional. The charity cannot be held responsible for omissions and/or errors.

Sites I refer you to are for information only.  They might conflict in their opinions, they might not even be medically sound, but I merely offer them for you to peruse and make your own judgements, accept or reject as you will.  Only by reading widely can we get an overall picture of fibromyalgia syndrome and how we can deal with its symptoms, learn to cope with them and still have a life.

I also include various awareness and local issues as well as general health considerations.