Wednesday 16 March 2011

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 17th 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!
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WORDz FOR THE WEEK
11.  Accept that some days you’re the pigeon, and some days you’re the statue.
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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.”
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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)
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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.
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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/
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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
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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
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!
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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.
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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.’
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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?’
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FibroInnovations
Watch the video then explore the rest of the site.  Pity it’s in the USA!
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.
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Diagnostic Criteria
From 1990 and Tender points to 2010 and SS, WPI and all that.
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Strictly Health and Wellbeing - Wednesday 23rd 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:-
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FibroWHYalgia:
Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness [Paperback]
http://www.fibrowhyalgia.com/  Also available on Amazon.co.uk
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Paul Hyde’s Hypnotherapy CDs
Email received gives details of Paul’s CDs.  He considers they may help FMS sufferers.
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East Sussex LINk Newsletter Edition 26 (March 2011)
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Horsham Area Council for Voluntary Service (HACVS) Bulletins
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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.

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