FMSSAS eNews 11.06.25

Hi there!

This is the last Saturday in June.  The year is half over!  It has been a somewhat traumatic time for me.  I hope you have weathered it well.  Let us all hope for significant improvements in our lives.  Maybe some of the tips and tricks I pass on to you will help.

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WORDz FOR THE WEEK

25.  Our lives begin to end the day we become silent about the things that matter.

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CFIDS & Fibromyalgia

1) "Lifting the Fog" Strategies for controlling brain fog. (Our most popular article ever.) http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems
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2) "Killing Me Softly: FM/CFS & Suicide"How to cope when life seems hopeless. http://www.cfidsselfhelp.org/library/killing-me-softly-fmcfs-suicide
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3) "Finding Your Energy Envelope" How to identify your limits and strategies for expanding them (An introduction
to Pacing). http://www.cfidsselfhelp.org/library/finding-your-energy-envelope-part-1
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4) "Sensory Overload" Causes, treatments and prevention. http://www.cfidsselfhelp.org/library/sensory-overload-sources-and-strategies
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5) "Taming Stressful Thoughts" The three step process for making your self-talk more realistic and more
positive (An introduction to Cognitive Therapy).http://www.cfidsselfhelp.org/library/taming-stressful-thoughts-making-thoughts-work-for-you

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Serotonin Series: IBS in Fibromyalgia & Chronic Fatigue SyndromeBy Adrienne Dellwo, About.com Guide  June 18, 2011http://chronicfatigue.about.com/b/2011/06/18/serotonin-series-ibs-fibromyalgia-chronic-fatigue-syndrome.htm
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Listserv Co-cure articles

1) Prevalence of asymptomatic Celiac disease in children with Fibromyalgia: a pilot study.http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106c&L=co-cure&T=0&P=3484

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2) Sodium oxybate for the treatment of fibromyalgia.
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106c&L=co-cure&T=0&P=3359
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DWP require people with ME/CFS to take part in a consultation process regarding reform of the DLA:
http://www.meassociation.org.uk/?p=6632

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What’s On 4 Me?

A comparatively new site advertising events throughout the country.  Neither Surrey nor Sussex has acquired anyone to be activity leaders.  The franchises are available – at a price!  For more info see the website http://www.whatson4me.co.uk/

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Interview with Researcher on Treating Fibromyalgia with CoQ10

Be sure to follow the links to the various articles.

http://www.endfatigue.com/web-newsletters/nl_2011-06-23.html

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Goalistics

Posts in Chronic Pain and other relevant stuff

http://goalistics.com/category/chronic-pain/

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Running on Empty? Fuel Up with NADH

Do you ever feel like a car that has run out of gas? If so, it may be time to add some NADH to your cellular tank.  NADH is the fuel our cells need to produce energy and function properly. NADH, a reduced form of nicotinamide adenine dinucleotide, is a naturally occurring coenzyme formed from Niacin (vitamin B3) that plays an essential role in the energy production of every human cell - all 100 trillion of them.

http://www.prohealth.com/ep/EP062411/index.cfm?slvor=10652.1041030.0.1.0.110434&eid

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Gardeners’ Club – Grow it!

We all know how important 5-a-day (or more) fruit and vegetables are for a healthy life.  What could be better than to grow your own?

http://www.gardeners-club.co.uk/default/204/Grow_It!_magazine.htm

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How to Drink Your Way Out of Fatigue

“Virtually every health authority, even conventional doctors, recommend 6-8 servings of vegetables and fruits per day but very few of us actually get that. I've found juicing to be a simple and easy way to virtually guarantee that you'll reach your daily target for vegetables. Juicing also allows you to add a wider variety of vegetables to your diet that you might not normally enjoy eating whole, and makes it easier for your body to absorb all those wonderful nutrients.”

http://articles.mercola.com/sites/articles/archive/2011/06/25/cherie-calbom-on-juicing-part-3.aspx

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Juice Plus + - 5+ a day

The World Health Organisation recommends we eat 5 to 9 servings of fruits and vegetables every day. Most people don't come anywhere close. Clinically proven Juice Plus+® helps you bridge the gap between what you should eat and what you do eat, every day.  View the Video

https://www.juiceplus.com/

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That leaves us on a note of food (or drink) for thought.  I hope they sustain you.

Adios for now, see you next week – I hope!

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 11.06.18

Hi there!

Wow!  This week’s offering is a bumper bundle.  Lots of interesting stuff for you. 

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WORDz FOR THE WEEK

24.  The hardest part about moving forward is not looking back.

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Worthing Area Newsletter

Here is the link to the June Newsletter

www.fms-sas.co.uk/PDF/WorthingFibroNews1106.pdf

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Fibromyalgia Research

Most of the research findings in fibromyalgia point to a malfunctioning of the central nervous system (CNS), which includes the brain and spinal cord. Yet, there appear to be a variety of abnormalities occurring in the peripheral soft tissues (muscles and connective tissue) and the peripheral nervous system that communicates with the CNS.

http://www.fmnetnews.com/basics-research.php

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Forget Fibromyalgia

The law of attraction is working constantly whether you aware of it or not

https://rebeccarichmond.infusionsoft.com/he/28476/e0b82600b32178c04bc9e2e85b71044a

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East Sussex LINk Newsletter

http://files.thecountylink.net/monthactmay11.pdf

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In pain? Crossing your arms may help

Crossing your arms across the middle of your body confuses the brain and helps reduce the intensity of pain, according to a new study.

http://www.reuters.com/article/2011/05/19/us-pain-arms-idUSTRE74I89Z20110519

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Online Program Reduces Impact of Chronic Pain and Improves Quality of Life

‘There is good news for the 76 million Americans who experience chronic pain including migraine, back pain, fibromyalgia and arthritis.  A new study reveals that an online, self-paced chronic pain management program reduces the physical and psychological burdens of this debilitating condition.’

It’s not just for Americans.  Anyone can sign up.

http://www.prnewswire.com/news-releases/web-based-program-eases-physical-and-psychological-burden-of-chronic-pain-122219978.html

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Alternative Health Practices Show Benefits For Treating Chronic Pain

A variety of complementary and alternative health practices - including meditation and relaxation techniques, manual therapies such as massage and spinal manipulation, meditative exercise forms such as yoga, Tai Chi, and ancient health practices such as acupuncture-show promise for contributing to the management of pain according to research presented on 19^th May at the Annual Scientific Meeting of the American Pain Society.

http://www.medicalnewstoday.com/releases/225912.php

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Relieving Back Pain May Help the Brain

Chronic lower back pain doesn't just hurt. It also appears to cause thinning of certain regions of the brain, which may lead to cognitive impairments, a study shows.

http://www.webmd.com/back-pain/news/20110518/relieving-back-pain-may-hep-the-brain

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Personal Independence Payment (PIP)

‘This factsheet is a basic overview of PIP. It is based on what we know so far and will be updated as we get more information.’

 http://www.disabilityalliance.org/f60.htm

‘You can find out more detailed information about the current benefit system in our Disability Rights Handbook, available at

 www.disabilityalliance.org/drh36.htm.’

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Fibromyalgia - Guidelines for the Disability Analyst.
Document released under the freedom of information act.
This is the training and development manual for the people carrying out the medical assessments for people claiming ESA. This is the specific chapter dealing with fibromyalgia. It has been produced by the Office of the Chief Medical Adviser.

http://www.ukfibromyalgia.com/downloads/Fibromyalgia%20Module%2014%20MED%20S2%20CMEP%200035%20V4.pdf

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Effective Treatment of Fibromyalgia Requires Multimodal Treatment Strategies
Comprehensive assessment of people with fibromyalgia involves more than a physical examination. Treatment of fibromyalgia requires a multidimensional approach that addresses symptoms, as well as psychosocial, behavioral, and physical factors.

http://www.clinicaladvisor.com/effective-treatment-of-fibromyalgia-requires-multimodal-treatment-strategies/article/203434/

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Organizations Launch Coalition 4 Fibromyalgia, and a Call To Action for the DSM-5

NeuroEndocrineImmune Disease (NEIDs) organizations have formed the second phase of the Coalition network to serve their patient community and change public policy. The Coalition 4 Fibromyalgia mission is to present a unified voice with common goals and objectives that will improve the quality of life for fibromyalgia (FM) patients and their families. This professional collaboration will strengthen its member organizations, promote resource-sharing, encourage networking and provide leadership training.
http://hosted.verticalresponse.com/144410/06b509a0f8/12007211/c6963c9e56/
http://www.coalition4fibromyalgia.org/News.html
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EEG Biofeedback Treatment Improves Certain Attention and Somatic Symptoms in Fibromyalgia: A Pilot Study.

Fibromyalgia (FMS) is a chronic, painful disorder often associated with measurable deficiencies in attention. Since EEG biofeedback (EEG-BF) has been used successfully to treat attention problems, we reasoned that this modality might be helpful in the treatment of attention problems in FMS.

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106b&L=co-cure&T=0&P=4032

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Interference with work in fibromyalgia - effect of treatment with pregabalin and relation to pain response.

Clinical trials in chronic pain often collect information about interference with work as answers to component questions of commonly used questionnaires but these data are not normally analysed separately.

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1106b&L=co-cure&T=0&P=4350
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Using Targets to Improve Health & Gain Control
“For my first few years with CFS, I tried to improve by making sweeping changes, an approach that always failed. Then I learned how to set small, realistic goals and that has made all the difference. By setting short-term targets, I have improved from 15% on the rating scale to 60%, with much greater stability and a lower level of symptoms.”

http://www.cfidsselfhelp.org/library/using-targets-improve-health

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Living within My Envelope: A How-To Story
In a study of the "envelope theory" reported in The CFIDS Chronicle, Fall 1997, the researchers found that individualized treatment programs can help PWCs [People with CFIDS] achieve their optimal level of activity and manage their illness more effectively. "Living inside the envelope" sounds easy, but it hasn't been for me. Seven years I've had CFIDS and only now am I finally, mostly, living inside my envelope. It's been an arduous process of discovery and letting go.

http://www.cfidsselfhelp.org/library/living-within-my-envelope-a-how-to-story

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We’ve almost reached the longest day of the year, at least the day with the longest daylight hours.  Let’s make the most of the long evenings while they last.  Evenings will be drawing in all too soon and the thoughts of winter will loom!  Get your daily dose of vitamin D while you still can!

Here ends this week’s epistle!  Have a great week and I hope you get some ‘feel good’ in your life.

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 11.06.11

Hello to you all

I hope you are all doing well and finding things to help you BE well.  Keeping your mind occupied is one of the best ways of putting your pain out of it!

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WORDz FOR THE WEEK

23.  Everybody wants happiness, nobody wants pain but you can’t have a rainbow without a little rain.

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Worthing Newsletter

Nichola apologises that this month’s newsletter will be a little later than usual.  She has recently moved house and until her new phone is connected she does not have access to the internet.  It will be available as soon as she is able to transmit it.

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CFS & FM -Exercise & Gene Expression Alterations

Objectives: To determine mRNA expression differences in genes involved in signaling and modulating sensory fatigue, and muscle pain in patients with Chronic Fatigue Syndrome (CFS) and Fibromyalgia Syndrome (FM) at baseline, and following moderate exercise.
http://www.ncbi.nlm.nih.gov/pubmed/21615807
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Resistance exercise training does not affect postexercise hypotension and wave reflection in women with fibromyalgia.

The purpose of this study was to assess the effects of resistance exercise training (RET) on aortic wave reflection and hemodynamics during recovery from acute resistance exercise in women with fibromyalgia (FM) and healthy women (HW).
http://www.nrcresearchpress.com/doi/abs/10.1139/h10-105?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed
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"Reframing: Not the Life I Planned, But a Good Life Nonetheless"  Mental adjustments that reduce suffering and make living with chronic illness easier   

Living successfully with CFS or FM requires not only changing what we do but also how we think. In the second of two articles on reframing, we'll look at several more mental adjustments that can reduce suffering and make living with chronic illness easier and more productive.
http://www.cfidsselfhelp.org/library/reframing-part-2-not-life-i-planned-good-life-nonetheless
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"25 Reasons Why I've Improved"  How one person used a combination of strategies to double her activity level.

Many people believe that improvement is difficult when a case of CFS or FM is severe. The experience of Bobbie Brown, a CFS & FM patient from Arizona, offers evidence that patients can get better.
http://www.cfidsselfhelp.org/library/25-reasons-why-ive-improved
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Aches and Pains? A Simple Solution You'll Love

If you could rub a magic lamp to make a genie appear, would one of your first wishes be relief from your pain?

http://www.prohealth.com/library/showArticle.cfm?libid=16287&B1=EG060111&utm_source=EG060111&utm_medium=em&utm_campaign=Wellness&slvor=10644.1040056.0.1.0.110434&eid

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Your Fibromyalgia Gone Forever because it’s not what you think it is . . .

‘No Need To Find A Cure For Fibromyalgia!  Why Is That? Because there already is one!’  You have to buy the ebook to find out what it is!!

http://www.victory-over-fibromyalgia.com/?hop=spenney

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Interesting Calendar for July 2011

To end on a lighter note. . . . THIS IS THE ONLY TIME WE WILL SEE AND LIVE THIS EVENT   

http://dl.dropbox.com/u/17459523/eNews_110611Calendar_for_July_2011.doc

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Fondest wishes to you all

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 11.06.04

Hello everyone

Loads of links have been dropping into my Inbox this week.  I’m saving some for next week otherwise you will all be suffering from information overload, and I did want to include some local information for you.  Happy reading!

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WORDz FOR THE WEEK

22.  Growing old is mandatory, growing up is optional.

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Gamma-Hydroxybutyrate (GHB)/ Xyrem for Fibromyalgia?

Beginning in the late 1990s, researchers found a surprising link between the use of Xyrem and a dramatic decrease in fibromyalgia symptoms of muscle pain and fatigue. It is now believed that GHB can significantly reduce fibromyalgia pain and fatigue by increasing the amount of slow-wave sleep that fibromyalgia patients experience on a nightly basis.

http://www.fibromyalgia-symptoms.org/fibromyalgia_ghb.html

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Breaking the Vicious Circle of Fibromyalgia

Have you been living on ever-increasing doses of pain medication? Have you been told to learn acceptance, prioritizing, and relaxation, etc.? Well, you don't have to do any of that any more! Please read this vitally important article — it unveils an incredibly easy solution to ending your Fibromyalgia pain naturally in as little as seven days!

http://www.elixirindustry.com/Fibromyalgia.htm

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Ask Dr. H: Using D-Ribose for fibromyalgia

Uses for D-Ribose range from folks with chronic fatigue syndrome or fibromyalgia to athletes looking to improve their exercise endurance.

http://articles.philly.com/2011-04-11/news/29406716_1_colon-cancer-diverticulosis-fibromyalgia-pain

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Serotonin Series: Do You Have Low Serotonin Levels?

The most popular treatments for fibromyalgia and chronic fatigue syndrome include increasing the available levels of serotonin, which is best known as a neurotransmitter but also acts as a hormone. SSRI/SNRI drugs do it, supplements such as SAM-e and 5-HTP do it, and some frequently recommended foods do it.

http://chronicfatigue.about.com/b/2011/05/28/serotonin-series-do-you-have-low-serotonin-levels.htm#gB3

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8 Natural Remedies That May Help You Sleep

Before you rush to the drugstore to buy an over-the-counter sleep medication, try one of the following natural sleep remedies. They are safer and have fewer side effects. Many of these can not only help you fall asleep and stay asleep, but they can also promote muscle relaxation.

http://articles.mercola.com/sites/articles/archive/2009/01/06/8-natural-remedies-that-may-help-you-sleep.aspx

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Suicide Warnings on Fibromyalgia,Chronic Fatigue Syndrome Drugs

A huge number of the drugs prescribed for fibromyalgia and chronic fatigue syndrome carry a black-box warning about increased risk of suicide or suicidal thoughts. A black-box warning is reserved for the most dire of U.S. FDA alerts, and it's something we should all take seriously.

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1105d&L=co-cure&T=0&F=&S=&P=4657

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Experimental: Treating CFS, fibromyalgia with statins, coenzyme Q10 and pregnenolone

A Note of Caution: Always consult with a physician before taking any kind of supplement or medication. Not only can chemical compounds cause reactions when taken alone, some side effects may occur in combination with other chemical compounds including dietary

supplements.

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1105d&L=co-cure&T=0&F=&S=&P=6029 

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Message Board

Don’t forget we have a message board where you can ask questions about fibromyalgia and provide your own stories and opinions.
http://fms-sas.proboards.com

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Brighton Coffee Morning – Thursday 16^th June

Anyone in the Brighton area is invited to a Coffee get together for fibro sufferers
Thursday, 16 June 2011 at 12:30
Emmaus Cafe, Drove Road, Portslade Old Village, Brighton, East Sussex, BN41 2PA

Contact Caroline for further information cazthecat@btopenworld.com  Tel: 0844 887 2376

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Horsham Group moves to Horsham Hospital

As from Monday 6^th June the Support Group meetings will be held in the Club Room at Horsham Hospital.  For full details, directions and future speakers please see  http://dl.dropbox.com/u/17459523/110529_Horsham_Posters.doc or www.fms-sas.co.uk/Posters/Horsham_Posters.pdf

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Camberley Suupport Group

This is a new group that we would like people in that area to support.

Venue:  Camberley Adult Education Centre Cafeteria, France Hill Drive, Camberley GU15 3QB
Meetings are held monthly on the 1st Monday of the month (as long as it is not a bank holiday) from 12.45-2.45pm.  For more details of meetings contact Amanda camberleyndistrictfmsg@gmail.com Tel: 01276 63595
Best times to call are Mon,Tue,Wed 10am - 2pm and weekends Sat/Sun between 4pm-6pm

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Publicity Posters

Posters are available from the website for you to print and display in your vicinity.  At present there is one for the Horsham area, a template for individual groups to complete to advertise their own meetings and a general one for where there are no groups.

www.fms-sas.co/uk/fmsposters.html

If group leaders have their own I will be pleased to display those too if you send them to me.

Webmistress@fms-sas.co.uk

Details of all meetings can be found at www.fms-sas.co.uk/fmsmeetings.html

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East Sussex LINk Annual Report for 2010/11
http://files.thecountylink.net/ar_2011.pdf
The agenda for the Annual Review Meeting on 14^thJune:
http://files.thecountylink.net/ama_2011.pdf
Directions to the venue can be found here
http://www.uckfieldciviccentre.com/directions%20to%20UTC.pdf
If you haven’t yet booked but would like to attend please contact the office to book your place.  If you have already booked your place at the meeting on June 14^thwe look forward to seeing you there.
The LINk Team

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Brighton Big Hug Self Healing Community

The NEW Big Hug Health & Well-being Centre in Brighton Marina offers community membership and individualised support to enable users to see “Self-Healing” as an important aspect of our lives. The purpose of this meet up group is to create a community of like minded people who develop the ability to feel at peace, experience joy, and alleviate pain and illness.

http://www.meetup.com/BrightonBigHugCommunity/?gj=wg2_ej1b

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So, there you have it!  Another weekly bundle.  I hope you find some solutions to your problems, meetings you wish to attend and treatments you want to try.

Jentl hugz

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.