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FMS eNews 29/11/14


This blog now has a page at Fibromyalgia Information Relief
http://www.fibromyalgia-information-relief.com/stellas-fms-enewsletters-blog.html
Thanks go to Ann Masterson for giving us publicity.
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WORDz for the WEEK

 197. Failing to confront your fears is shrinking from life at the very moment that you should be embracing it.
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 Stories about Young Carers

 We have received the following media request.  Please pass it on. If you are interested in providing your story, please contact the office by Monday 10th December
“Hi
I'm working on a story about young carers. Nearly a quarter of a million children in England and Wales are caring for a relative, according to stats. My piece will be a report on what these young people are doing that’s so amazing and how they should be supported. I would like to do a bit of myth-busting with this article - i.e. undo incorrect assumptions people make. I would also like it to inform readers about the reality of the situation and give them an insight into what life is like for young carers. Finally, as I say, I want it to outline some key ways in which young people are being supported and ways in which they should be supported, but currently are not.
Ideally, I would like to talk to young carers themselves or people who have cared for adults when they were children. Also, other experts working with this group of people.
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org. 
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 Fibromyalgia Information and Relief Made Simple

 Fibromyalgia Information: What is it? Is it curable? 
Those are the most frequent questions my patients ask me! 30 years experience as Pain Consultant makes fibromyalgia easier to understand and treat. 
I have developed a special interest in fibromyalgia because I have never agreed with the common statement: "It's all in your head!" 

 A comprehensive site explaining fibromyalgia: http://www.fibromyalgia-information-relief.com/
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 Welcome to Fibropartners.com
"I don't see the point in measuring life in terms of time anymore.
 I'd rather measure life in terms of making a difference" - Stephen Sutton

 An inspirational message from a brave young man, one we at Fibropartners have taken to heart and what this website is all about 'Making a Difference'.
FIBROPARTNERS has been created by the partner of a long term sufferer of Fibromyalgia, to promote awareness of how important and beneficial to all who have it and live with it, understanding and supporting your partner who has fibro is.
This awareness applies not specifically to Fibromyalgia alone but any Chronic Condition.
There are numerous websites that are devoted to offering support & advice to the sufferers of the conditions but there are few, if any, that are aimed at supporting the partners/family also, so that they in turn can give the support needed to their partners.
​FIBROPARTNERS aims to be different and unique by providing support and information to those who have the condition and those who live with it.

 Read more - explore the site: http://www.fibropartners.com/
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 Triggering Effects: Andrew Lloyd on Infections, Genes and Getting Chronic Fatigue Syndrome 
 Prof Andrew Lloyd, University of New South Wales- Acute infection & post-infective fatigue as a model for chronic fatigue syndrome.
An innovative study that tracked the development of CFS/ME after several different initial infecctions has revealed surprising findings about the role of the immune system and role of genetic variations in the susceptibility to post-infective fatigue.

 http://www.cortjohnson.org/blog/2014/11/22/infections-genes-chronic-fatigue-syndrome/
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 How Many Marbles Do YOU Have? A Children’s Chronic Fatigue Syndrome and Fibromyalgia Book 
“Without having to say I was in pain, or I didn’t feel good or I was tired, I could simply say I was out of marbles.” – Melinda Malott
Chronic fatigue syndrome and fibromyalgia are difficult enough to understand for adults, but children are another story. Explaining why mom or dad can’t do the things other moms and dads are doing is a challenge, to say the least, but Melinda’s book, “How Many Marbles Do You Have? Helping Children Understand The limitations of Those With Chronic Fatigue Syndrome and Fibromyalgia,” provides a simple, understandable way to do that.

 http://www.cortjohnson.org/blog/2014/11/27/many-marbles-childrens-book-chronic-fatigue-syndrome-fibromyalgia/
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 Yes, Fibromyalgia is Real – and Here’s Why 
When I saw that the video “Fibromyalgia: It’s Real It’s Manageable What You Can Do” had been viewed almost 85,000 times I had to check it out.  In it, Dr. Andrew Gross, the head of the Rheumatology Clinic at the University of California at San Francisco presents a a birds-eye view of fibromyalgia.
The grace in this video – which has been viewed over 100,000 times – is Gross’s engaging presentation style. If you want enroll somebody in your life in the idea is that fibromyalgia is a real and serious disorder – this might be the video to do it.
At the same time the video is by no means comprehensive; Gross’s treatment approach to FM is decidedly conservative and it’s getting a bit dated. Still, for an easy to understand lecture on the basics of FM, it may be the best out there.

 http://www.cortjohnson.org/blog/2014/11/26/yes-fibromyalgia-real/
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 Releasing Pain: Fibromyalgia and the John F. Barnes Myofascial Release Approach
 'As with every recovery/recovering story we note that both fibromyalgia and chronic fatigue syndrome are heterogeneous disorders and that what works for one person may not work for another. Health Rising is not affiliated with Sheldon’s practice in any way.' 

 An insight into the John F. Barnes Myofascial Release ApproachTM
 I believe some ground-breaking research in the scientific world provides an exciting opportunity for those suffering from fibromyalgia to address the cause of pain. The most important understandings concern the body’s forgotten system – the fascial system and  the glial cells (thought of as the fascia of the brain).

 Read more: http://www.cortjohnson.org/blog/2014/11/23/releasing-pain-fibromyalgia-john-f-barnes-myofascial-release-approach/
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 Fibromyalgia Leg Pain

 Do you suffer with fibromyalgia leg pain?  Pain that is associated with the tender points and trigger points in multiple sites?
Although we often refer to them as tender POINTS, they are actually more like tender AREAS. 
I have yet to meet someone with fibromyalgia that has merely a POINT of pain or tenderness. (However, the 18 tender points test is still used as ONE part of diagnosing fibro) And because tender points differ from trigger points, refer also to the 'trigger points' article for a more in depth discussion on TRP's in fibromyalgia.
Now most people with fibro describe an 'area' of pain that radiates to the surrounding tendons or trigger points. Often there is an involvement with an associated tendon, ligament or TRP (trigger point). This is what causes the pain to radiate or extend.

 Read more:  http://www.living-smarter-with-fibromyalgia.com/fibromyalgia-leg-pain.html
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Why Yoga?

 Can yoga really work for those of us with ME/CFS? This video explains the why of how it works but it is up to each of us to establish and maintain a proper yoga practice with full intent and determination.
Can yoga really help those of us with ME/CFS? This video explains the how and why it works but it is up to each of us to take up and maintain a proper yoga practice with full intent and determination to realize its full benefits.

 View videos - and more: http://cfsknowledgecenter.ning.com/
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 Curcumin Made 65X More Bioavailable - Modern Take on a "Golden" Spice Busts Brain Fog, Joint and Body Pain
Have you had a "Fibro Fog" day lately? Hazy focus, slow thinking and spotty memory can be frustrating when you're trying to take care of business. What about a "joint and body pain" day? Morning stiffness, creaky flexibility and muscle aches make it hard to get up and go.
Of course, for fibromyalgia and CFS/ME sufferers, on the worst days these brain and body complaints combine - diminishing work performance, day-to-day activities and overall quality of life.
Turmeric, a legendary "Golden Spice," may help. Used for thousands of years in both Ayurvedic and Traditional Chinese health systems, turmeric's active compound, curcumin, has been shown in scientific research to have multiple biological activities that may sharpen mental performance while soothing away muscle aches and joint discomfort. 

 Read more: http://www.prohealth.com/ep/EP112414/index.cfm?slvor=12157.1173265.0.1.0.110434
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 Why Am I Always Tired?

 If you are always tired there could be many reasons for it, varying from physical and mental conditions to lifestyle, diet and changes in your environment. Being constantly tired all day obviously has a negative impact on the quality of your life so it is important to identify why you are feeling tired and what you can do about it.
What are the possible reasons for you being always tired?

 Find out: http://www.troohealthcare.com/p-750-why-am-i-always-tired.aspx
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CHAIRMAN’S REPORT To the FMSSES AGM on 8th November 2014 at Chichester Park Hotel

 If I am honest this has been my year “horreebla”? It seems we have taken two steps back and made very little headway.
Our Fibromyalgia Road Show has come to a stop. Events are more difficult to arrange with less
manpower and our expenses are rising all the time. To add insult to injury I have been hacked and my
address book was wiped clean. Also some folks will know I lost my husband to a blood clot last
November, so it has been a rotten year for me personally.
Believing we had a full active compliment of dedicated helpers, at the last AGM we all agreed to change our name to Fibromyalgia South East Support. As it happened this has meant more work with sadly less trustees.

 See the rest of the newsletter here: https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/FMSSES_Newsletter-14.11.pdf

 Useful contacts list: https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/FMSSES_Contacts_14.11.pdf

 See also:  http://fibromyalgiasoutheast.org.uk
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 A personal  note from Vicky

 When you receive this I should be on my way back from two days on my Level 2 Be Activated course.  Who knows where I’ll have you prodding yourself after this!
Be Activated is a way of activating muscles which have switched off - almost like replacing a blown fuse or rebooting a computer.  It looks at the body’s compensations as it loses it’s ability to engage the prime movers of the body.  These compensations reduce the ability of the body to work at it’s highest effectiveness and thus increase the risk of injury.
Also:
Education: Diet Vs Exercise
Video of the week: The Shoulder Bridge
Success Story: Monica (video)

 Read the whole blog: http://us4.campaign-archive2.com/?u=1f0fb2b9eada51a6fa54509ba&id=307ee8b85c&e=2a0fc40be9
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 Audiobook Library Service

 [books] We provide an audiobook library service to adults and children who find it difficult to read or hold a book due to an illness or disability. 
We are passionate about making books accessible to everyone and for many of our members our audiobooks not only provide a link to the wonderful world of literature but can be a relief from pain or anxiety, lifting them out of what are often challenging circumstances. The service caters for children and adults with a wide variety of print impairments.  We have a huge library of over 7,000 titles in a wide selection of genres, as well as a large educational library for those still at school. Whether you are interested in history titles, such as The Island Race by Winston Churchill, or a good mystery novel such as the Agatha Raisin series by M. C. Beaton, we have something for everyone.
Choose from thousands of fantastic audiobooks to download to an iPod or other portable device to listen on-the-go!

 Find out more: http://www.listening-books.org.uk/
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Last week I recommended Beth Urmston's magazine, Fibro Flare.  It's big - 115 pages but well worth the read https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/Fibro_Flare_Mag_Nov_2014_Issue_7.pdf
Congratulations to her team for producing it.  She asked me to write an article for the next edition, which I did.  So that should appear in the December edition.

For now - fibro hugz to all
Keep good and be well
Stella
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 N.B. I would like to point out to you that the information in my FMS eNews blog is passed on to you mainly from other sources. Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. 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. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.
I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.

Posted by No comments:

FMS eNews 22/11/14

Did any of you knit the little hats for the AgeUK Big Knit?  I did 300 for this year's project and I have done 35 towards next year!  I find knitting very therapeutic.
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WORDz for the WEEK

196. If you learn to respect yourself and understand yourself, then you can push yourself through anything in life and accomplish it all.
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 From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome
It's fairly unusual to find someone who "only" has fibromyalgia, or "just" has chronic fatigue syndrome. More often than not, we have multiple related conditions to contend with.
This week, up here and down in Featured Articles, you can learn all about some of the common disorders that we have and get information on how to treat and manage them.

 Take care of yourself!

 http://specials.about.com/service/newsletters/chronicfatigue/30546119880001d7c1003221.htm
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 THE LATEST IN FIBROMYALGIA & CHRONIC FATIGUE
A collection of Articles

  • Why You Should Say "NO" a Lot when Living with Fibromyalgia & ME/CFS
  •  Traveling with Fibromyalgia & Chronic Fatigue Syndrome
  •  Brain Differences in Chronic Fatigue Syndrome: Symptoms Explained?
  •  Could Alzheimer Drug Work for Fibromyalgia?

And more:  http://chronicfatigue.about.com/

 See also Adrienne's Facebook Page: https://www.facebook.com/pages/About-Fibromyalgia-Chronic-Fatigue-Syndrome/270250616343765
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Editor’s Welcome

Welcome back to the Fibro Flare magazine. It has been another hectic month but before I tell you all the exciting things we have for you this month it would be remiss of me if I did not mention the feedback we have received from our previous month’s issue. It was hard to choose from all the positive comments we received. Without all your support, we wouldn’t be able to continue. Thank you again to all our most loyal and supportive readers!

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 Three Deficiencies That May Be Linked To Fibromyalgia
Dr. Linus Pauling, winner of two Nobel Prizes, once boldly declared, “You can trace every sickness, every disease and every ailment to a mineral [a nutrient] deficiency.”
Modern science has explored the link between nutritional deficiencies and chronic pain and found some surprising connections.
That’s not to say that all chronic pain is caused by a nutritional deficiency, but we’d be kidding ourselves if we didn’t acknowledge that nutrition can, and in many cases does, play a part.
We’ve done our research and found three common deficiencies with links to the symptoms of chronic pain:

  1.   Vitamin D
  2.   Magnesium
  3.   Iron

Find out about them: http://fibromyalgiatreatmentgroup.com/fibromyalgiatreatment/three-deficiencies-that-may-be-linked-to-fibromyalgia

 See also FB page:   https://www.facebook.com/fibrolief
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7 Foods That Are Making Your Fibromyalgia Worse
Anyone with chronic pain can attest to the fact that there are certain foods and ingredients that can aggravate the pain. Though each person’s triggers may differ, there are certain ingredients that should generally be avoided. Among them are artificial sweeteners such as aspartame. These sweeteners activate the neurons that increase our sensitivity to pain, often resulting in a flare up.
Lets take a look at seven of the most common food sources of aspartame and why you should avoid them:
  1.  Diet Sodas
  2.  Chewing Gum
  3.  Drink Powders
  4.  Sweetened Cereals
  5.  Tabletop Sweeteners
  6.  Flavored Water
  7.  Sugar Free Foods
Read about them: http://fibromyalgiatreatmentgroup.com/fibromyalgiatreatment/7-foods-that-are-making-your-fibromyalgia-worse
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 14 Reasons You're Always Tired
Feeling sluggish? Ditching these bad habits that drain your energy will help.

 1. Reasons why you're always tired
Lack of sleep isn't the only thing sapping your energy. Little things you do (and don't do) can exhaust you both mentally and physically, which can make getting through your day a chore. Here, experts reveal common bad habits that can make you feel tired, plus simple lifestyle tweaks that will put the pep back in your step.

 Find the rest  here: http://www.health.com/health/gallery/0,,20818045,00.html?xid=healthyliving11192014
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 A Nation in Pain – A Medical Establishment Without a Clue Pt. 1 
(from Chapter I of A Nation of Pain by Judy Foreman)
“I will argue that lack of adequate pain control is one of the most urgent health problems in America.” Judy Foreman
She didn’t know such pain was even possible.  The slightest mistake – the slightest move in the wrong direction – would leave her gasping with pain.  Simply changing from a sitting position on the bed to lying down was excruciating.
Eventually they found something – that was the good news.  An MRI found real damage – some almost-herniated discs, spondylolisthesis, bone spurs, and arthritis in her neck.  Others who are less fortunate can be in excruciating pain for no reasons doctors can find.  (And, strangely, others with horrific structural damage aren’t in any pain at all.)

 Read more: http://www.cortjohnson.org/blog/2014/11/16/nation-pain-medical-establishment-without-clue-chap/
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 Fibromyalgia: Understand the diagnosis process

 Fibromyalgia symptoms often mimic those of other conditions. Determining the true cause of your symptoms is key to receiving proper treatment.
Fibromyalgia symptoms include widespread body pain, fatigue, poor sleep and mood problems. But all of these symptoms are common to many other conditions. And because fibromyalgia symptoms can occur alone or along with other conditions, it can take time to tease out which symptom is caused by what problem. To make things even more confusing, fibromyalgia symptoms can come and go over time.
That's why it can take a long time to go from fibromyalgia symptoms to a fibromyalgia diagnosis.

 http://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401
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 Magnesium: The Missing Key to Your Health?
One mineral... magic in a bottle? Considering the role magnesium plays as an essential mineral and a cofactor for hundreds of enzyme reactions... the answer is a resounding YES!
Magnesium is found mostly in our bones, but not only is it necessary for healthy bones, but also the proper function of nerves, muscles, stomach acid and bowel function including maintaining healthy electrical balance required for normal heart rhythm.

 Read more: http://www.prohealth.com/ep/EP111414/index.cfm?slvor=12141.1172739.0.1.0.110434
Also
  • What You Need to Know About Folate and B12 
  • A Multivitamin That Makes a Difference 
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FM HealthWatch
Sensory Distress: The Other Side of Fibromyalgia 
Fibromyalgia is about more than pain. People with FM report also having increased sensitivity to other types of stimuli, such as light, sounds, smells and touch. Find out what researchers learned about how the FM brain responds to non-painful sensory stimuli.

 ALSO
Fibromyalgia News and Lifestyle
  •  Fibromyalgia-Friendly Turkey Day Recipe Tips and Swaps 
  •  Small Fiber Neuropathy Fibromyalgia Studies Mount: But Does SFN Cause Pain in FM? 
  •  Tame Your Holiday Fibro Frenzy  
  •  Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria 
  •  The Functional Capacity Evaluation (FCE) and Your Disability Insurance Benefits 
and more
All at: http://www.prohealth.com/em/EM111914F/index.cfm?slvor=12150.1173074.0.1.0.110434
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Drug Combo in Pridgen Antiviral Fibromyalgia Trial Identified – Some Results Available
A lengthy article originating on the University of Alabama website and an  abstract presented to the American College of Rheumatology Conference indicates that the two drugs Dr. William “Skip” Pridgen and virologist Carol Duffy PhD used in their Fibromyalgia antiviral trial were Famciclovir, better known as Famvir and Celexicob, best known as Celebrex. The report also indicates that  Duffy found only herpes simplex – 1 viruses (HSV-1) in the gastrointestinal tissues of the FM patients.  Neither of these drugs nor this type of herpes virus have been commonly used or associated with chronic fatigue syndrome.

 See more at:  http://simmaronresearch.com/2014/11/drug-combo-pridgen-antiviral-fibromyalgia-trial-identified-results-available/
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 DWP’s Secret Death Reviews Spare Atos, 500k Sanctioned Claimants Disappear, Three Labour WCA Changes 

 Dear Reader,
Labour claims it will make three ‘crucial’ changes to the work capability assessment (WCA) if they gain power next May. But how ‘crucial’ are the changes in reality and will the promise make you more likely to support Labour at the general election? Give us your views and we’ll make sure they are passed on.
(Also, see below for how the chances of getting into the support group have been increased by the upper tribunal due to cahnges made to the WCA in 2010).
We can probably guess your views on the fact that an average of two benefits related deaths every month are secretly investigated by the DWP, many following a WCA. But the evidence from such reviews may not be being passed on to coroners courts. Moreover, the DWP are refusing to follow an official recommendation that a medically qualified person should always review Atos medical reports in these circumstances.

 Read more: http://www.benefitsandwork.co.uk/news/2937-19-november-2014-newsletter
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Judge brands DWP jobseeker’s agreement ‘unlawful’, after action by disabled claimant

 A judge has told the Department for Work and Pensions (DWP) that part of the agreement signed by out-of-work benefit claimants does not comply with the law, following a legal challenge from a disabled job-seeker.
The comments by Judge Christopher Ward in the upper tribunal could potentially affect millions of disabled and non-disabled people who felt they had to sign DWP’s jobseeker’s agreements in order to continue to receive out-of-work benefits.

 http://disabilitynewsservice.com/2014/11/judge-brands-dwp-jobseekers-agreement-unlawful-action-disabled-claimant/
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 LATEST NEWS

 NHS facing black hole over Better Care Fund
Virgin bids for deal worth £1.2billion
1 in 3 hospitals needed bailout last year
Labour supports anti-privatisation bill
NHS spends £5.5bn on agency nurses
Hospitals 'sending patients home too early'
Death of babies cared for by private firm probed
Two in five fear NHS will cease to be free
NHS boss defends privatisation

 http://nhsforsale.info/
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 A personal  note from Vicky

 One of the things I don’t like about getting older is that I don’t see as much of my children as I once did.  It was lovely to have Emma home this week, albeit briefly.  The eyebrow threading trip, was though, not so nice but it needed doing!
It really gives me pleasure to see the progress people make and I think Barbara - who I’m sure will not mind me saying - is not one of the youngest in my classes - brought that home to me recently. When I think how stiff she was when she started classes.  Seeing her manage a roll up from lying with good form was inspiring and makes it all worthwhile.
Also:
Education: The Grid
Video of the week: The Diamond Press
Success Story: Gaynor

 More details here: http://us4.campaign-archive2.com/?u=1f0fb2b9eada51a6fa54509ba&id=d9051c6b23&e=2a0fc40be9
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 QiGong at Faygate Village Hall, Horsham on 29th November

 Each year in November we teach a winter warming workshop combining Qigong movement and stillness. Learn effective techniques to help you truly relax, calm the mind, strengthen the body, release physical tension and increase energy. If you are looking to de-stress and boost your immune system before the Christmas period, this workshop is for you.

 More details: http://us2.campaign-archive2.com/?u=75076062ba40962e2e364d5f4&id=04ccb74a64&e=751f85837c
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And finally


 Here is an idea that might benefit one or more of us FMS folks. There's a website called Contrabutoria, it's basically a way of journalists/wannabe writers to suggest a piece of writing they want to do, members of the site assign 'points', and the ones with the most points get commissioned, the author gets paid, and their work may get bought by magazines etc.
So I wonder if any of us patients/relatives would like to have a go at writing a piece based around experiences of FMS? The rest of us join the site (it's easy and free), assign our free points on voting for the piece to be commissioned. The author gets paid (and maybe gives a donation to FMA UK (?) or other FM charity)
Benefits: publication for the author, payment, publicises our story, maybe one of us even starts an exciting new career.
I would ask anyone interested to check the site out and leave a comment on here (or email me) if you think the idea is a goer.
So you journalists and would-be journalists, get your pens out or get your fingers tapping on the keyboard.

 See www.contributoria.com and https://www.facebook.com/contributoria

 Happy reading - and writing.
Stella
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N.B. I would like to point out to you that the information in my FMS eNews blog is passed on to you mainly from other sources.  Links are given to the original articles. I take no responsibility for their accuracy but freely give them publicity if I think they might be of interest to my readership. 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. Any advice or recommendation of a medical or legal nature should always be discussed with a qualified professional.
I also include various awareness items, benefits issues, as well as general health considerations. Anyone wishing to reproduce any of the included items in printed form should seek permission from the originators.
Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr. who died in May 2011.
This eNews is my personal offering to fibromyalgia sufferers and their carers and is not related to any other organisation or charity.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.

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