FMSSAS eNews 12.01.21

Hi there!

Information this week, like Topsy, just growed!  I hope it hasn’t grown beyond usefulness.  You won’t have a dull moment if you follow through with some of these!

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WORDz FOR THE WEEK

54.  My greatest fear in life is not having a big enough impact on someone’s life to always be remembered . . .

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Kelly’s Kontributions

The Most Expensive Disorder? Clauw on the FM/CFS-ness of Chronic Illness
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112e&L=co-cure&T=0&P=456
The Reason Fibromyalgia & Chronic Fatigue Syndrome "Bring Friends"
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=495
Integrative medicine expert Dr. Alex Vasquez releases innovative new book on fibromyalgia.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=2287
Delineating psychological and biomedical profiles in a heterogeneous fibromyalgia population using cluster analysis.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=648
Health and distress predictors of heart rate variability in fibromyalgia and other forms of chronic pain.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201a&L=co-cure&T=0&P=316
Brain dysfunction in fibromyalgia and somatization disorder using proton magnetic resonance spectroscopy: a controlled study.
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1201b&L=co-cure&T=0&P=252

My Secret Weapon: Pre-Emptive Rest

http://www.cfidsselfhelp.org/library/my-secret-weapon-pre-emptive-rest

Illness and Housekeeping

http://www.cfidsselfhelp.org/library/illness-and-housekeeping

Finding Support Groups and Doctors

http://www.cfidsselfhelp.org/library/finding-support-groups-and-doctors

Lack of Support: "My Family Doesn't Understand"

http://www.cfidsselfhelp.org/library/relationships

Is Sleep Associated With Fibromyalgia?

http://www.myfibro.com/news/research/is-sleep-associated-with-fibromyalgia?utm_source=twitterfeed&utm_medium=twitter&utm_campaign=Feed%3A+myfibro%2Fmain+%28My+Fibro%29

Possibilities from May 2011

http://www.imj.ie/ViewArticleDetails.aspx?ArticleID=3654
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1105b&L=co-cure&T=0&F=&S=&P=3815
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1105b&L=co-cure&T=0&F=&S=&P=1075
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FMS Conference, Easter Weekend 6^th-9^th April

For the first time – day passes are available.  Limited number available.  If you aren’t attending the conference with full board you can attend as a day visitor.  Read the latest news here:  www.fms-sas.co.uk/Conf12/Conf_Bulletin_12-03.doc

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Akvamin – The natural way to improve bone, muscle and joint health

Akvamin is a product for both men and women in all ages. It has to date 5 internationally published studies (PubMed) and a total of 8 studies made which displays Akvamin’s good effects.

http://akvamin.com/?lang=en&gclid=CLfw0ILA0q0CFUhrfAodU0zAnA

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9 Natural Anti-Inflammatory Herbs You May Not Know

Fix your inflammatory conditions naturally with these healing anti-inflammatory herbs

http://theconsciouslife.com/9-natural-anti-inflammatory-herbs.htm?mid=57

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Dr Myhill on Fibromyalgia and Mitochondrial Dysfunction

Dr. Sarah Myhill is a UK-based physician with a special interest in fatigue and nutrition. Her pioneering research (“Chronic Fatigue Syndrome and Mitochondrial Dysfunction”) suggests the cells’ energy generating mitochondria are dysfunctional in ME/CFS – a situation that can produce various symptom clusters, including: a) blood flow/vascular abnormalities such as orthostatic intolerance, b) the widespread pain and sensitization most typical of fibromyalgia syndrome, and c) fatigue, exhaustion & brain fog.

http://www.prohealth.com/library/showarticle.cfm?libid=16720

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 Fibromyalgia – an article by Larry McMahon

Well first of all, it’s what I call a “mystery illness” – inasmuch as the medical profession generally have neither an explanation nor a cure for it. Sufferers experience extreme pain in the muscles and joints, along with extreme exhaustion and other symptoms. Sometimes the pain can move around to different parts of the body. But the baffling thing is, that when tests, scans or x-rays are taken, nothing shows up !

http://www.larrymcmahon.com/morearticles.html#Fibromyalgia

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Coping With Fibromyalgia at Home

Simple strategies can make fibromyalgia manageable at home

http://www.everydayhealth.com/fibromyalgia/coping-physically/fibromyalgia-at-home.aspx?mid=57

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Chronic Pain and Depression: Managing Pain When You’re Depressed

Living with chronic pain should be enough of a burden for anybody. But pile on depression -- one of the most common problems faced by people with chronic pain -- and that burden gets even heavier.

http://www.webmd.com/depression/managing-pain?ecd=wnl_fib_011712

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CHRONICLES OF FIBROMYALGIA

Chronicles Of The Ups & Downs & Sideways Progress Of A Female Living With Fibromyalgia ©

One of many Fibromyalgia blogs.

The Breakable Bonds Of Friendship

http://networkedblogs.com/sOwjT

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DWP to recognise fibromyalgia as a real disability - e-petition

Please sign this petition to get FM recognised as a disability by DWP

http://epetitions.direct.gov.uk/petitions/12627?mid=57

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Barriers to getting work - Survey

This survey is being undertaken by Voluntary and Community Action Chichester District and is part of a piece of work being undertaken by Chichester in Partnership (the local strategic partnership). The partnership is assessing the barriers to people accessing work and investigating what support would best help people.
If you are a resident of Chichester District (or an organisation supporting people in Chichester District) and you are currently out of work we would appreciate your support in answering this short survey. All individuals will remain anonymous.
Please complete this survey by Friday 3rd February.

http://www.surveymonkey.com/s/FSYSDJ3

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Bond Holidays Newsletter

The 65 bedroom fully accessible hotel is the largest family run fully accessible hotel in the North West, possibly even the UK and with it we are proud to provide an amazing party atmosphere that you will struggle to find elsewhere.  Whether you are choosing to visit us for a holiday or a respite break using our Holidays With Care team we aim to provide you with memories you will cherish forever.  From the sounds of Abba or Elvis to the Stars Of Coronation Street there is always plenty going on at the hotel.  Our Bank Holiday Specials even provide FREE tickets to some of Blackpool’s best attractions! 

http://login.bananamail.co.uk/new/viewnewsletter2.aspx?SiteID=9375&SID=6&NewsletterID=335016

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New pension and benefit rates for 2012–2013

Details of next (this) year's pensions and benefits rates have been announced. The new rates will be paid from April 2012.

www.direct.gov.uk/en/Nl1/Newsroom/DG_200634?mid=57

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That’s it then!  Hope you have a happy pain-free week.  If you have any tips and suggestions or useful websites to aid fibro survival, do let me know.

Best regards

Stella

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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.    Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.

Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.

Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com/

FMSSAS eNews 12.01.14

Hello again

It’s been a bit colder today than of late.  The flora of the gardens and countryside thought it was spring already and burst into bloom.  Hope they don’t regret it!  I am posting this late on Friday night because tomorrow the trustees meet in Chichester.  I shall be out all day.  Hence my diligence in getting this eNews to you early!

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WORDz FOR THE WEEK

53.  Every day may not be good, but there’s something good in every day.

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Worthing Fibro Newsletter for January

www.fms-sas.co.uk/PDF/WorthingFibroNews1201.pdf

Reminder paper

www.fms-sas.co.uk/PDF/WorthingFibroNews1201a.pdf

See all past issues

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

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MANAGING FIBROMYALGIA

Fibromyalgia and the Power of D

http://hosted.verticalresponse.com/790349/de2004b7b2/1470670689/c4d29ef80f/

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Cheap & Easy Home Remedies for Fibromyalgia & Chronic Fatigue Syndrome

Fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) come with dozens of symptoms that can range from annoying to debilitating. Treatment regimens are generally aimed at the worst of them, but so far we don't have any treatments that relieve all of our symptoms.

Where treatments leave off, self-management takes over. You have a lot of simple, low-cost options for managing these leftover symptoms.

http://chronicfatigue.about.com/od/treatingfmscfs/ss/Cheap-And-Easy-Home-Remedies-For-Fibromyalgia-And-Chronic-Fatigue-Syndrome.htm

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The government's disability benefit reforms

No apologies for the number of items under this heading – it is important:-

Mayor Boris Johnson victim of DLA con trick

London Mayor Boris Johnson is just one of thousands of individuals and organisations whose overwhelming opposition to axing disability living allowance has been grossly misrepresented by the government in an effort to force through the highly controversial change.  Read more:

http://www.benefitsandwork.co.uk/news/latest-news/1507-mayor-boris-johnson-victim-of-dla-con-trick?utm_source=iContact&utm_medium=email&utm_campaign=Benefits%20and%20Work&utm_content=boris

Government 'misleading' over disability benefit consultation

Research to be published on 9 January 2012 will show massive opposition to the government's disability benefit reforms, and expose the coalition's masking of the results of its own consultation on the Disability Living Allowance (DLA).

http://www.ekklesia.co.uk/node/16005?mid=573

Responsible Reform, A Report on the proposed changes to Disability Living Allowance

http://www.benefitsandwork.co.uk/benefitsinfo/responsible_reform.pdf?utm_source=iContact&utm_medium=email&utm_campaign=Benefits%20and%20Work&utm_content=boris

Revealed: New Report shows overwhelming opposition to coalition’s disability benefit reforms kept hidden by the government

http://tinyurl.com/86h82gb

Disabled people listened to on welfare plans? It's a government sham

http://www.guardian.co.uk/commentisfree/2012/jan/08/disabled-people-welfare-reform-sham?INTCMP=SRCH

The UK’s Welfare Reform Bill has to be responsible says Margo Milne

http://www.patient-experience.com/index.php/the-uks-welfare-reform-bill-reform-has-to-be-responsible-spartacusreport-says-margo-milne/?mid=574

Other links to articles about DLA reform

http://www.ekklesia.co.uk/disabilitylivingallowance

Welfare Reform

The Scottish Government set out its opposition to proposed changes to the welfare system.

http://www.scotland.gov.uk/News/Releases/2011/12/21150319

Lords inflict triple welfare bill defeat on government

Campaigners win House of Lords votes on Employment and Support Allowance

http://www.guardian.co.uk/society/2012/jan/11/lords-welfare-bill-defeat-for-government

Save Disability Benefits and Services

Including:  Sign Pat’s petition if you haven’t already done so.

http://carerwatch.com/reform/

Benefits and Work Newsletter Huge ESA victory – now you have till Tuesday to save DLA http://www.benefitsandwork.co.uk/news/latest-news/1510-12-january-newsletter

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What is FibroTV?

 FIbroTV is a weekly Podcast designed to bring the chronic Illness and chronic pain community together in a POSITIVE way. It is a place to educate family, friends, the public  about fibromyalgia.

http://fibrotv.com/about-fibrotv/

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Spend and Raise

Help raise money for our charity when you shop online

http://www.spendandraise.com/fmssas/

Latest offers

http://buy-news.at/N8T-NLU0-953A4AC1BE/cr.aspx

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Give as You Live Newsletter

Another opportunity to raise money for FMSSAS when you shop online.

http://email.everyclick.com/interface/external_view_email.php?W917140929773115032421736401513

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Easy Fundraising

Find & remind toolbar to boost funds raised by easyfundraising.  Easyfundraising is offering a 50p donation to the individual's charity simply for downloading and installing the toolbar.  Easy money!  If everyone who receives this does it we would raise over £225.  So will you?

http://www.easyfundraising.org.uk/find-and-remind/

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10 Things to STOP Doing to Yourself With Fibromyalgia & Chronic Fatigue Syndrome

When you have a chronic illness like fibromyalgia and chronic fatigue syndrome, you've got enough working against you - you don't need to make things worse for yourself!

http://chronicfatigue.about.com/b/2012/01/10/10-things-to-stop-doing-to-yourself-with-fibromyalgia-chronic-fatigue-syndrome.htm

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Bond Holidays 

You can check out our fantastic range of holidays for people with disabilities and special needs. Wherever you choose to stay, you are guaranteed great service, great value and a great time. We have always offered some of the best accessible holidays in the business, but we've expanded to offer a wider selection of disabled holiday options than ever before, but whatever you choose, you can be sure of a very warm welcome, and that our commitment to disabled guests with special needs will always be our top priority.  Bond Hotels in Blackpool and St Anne’s.  Coach travel available.

http://www.bondhotel.co.uk/

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FMS Conference Easter Weekend 6^th-9^th April 2012

It’s not too late to book.  See the latest Conference Bulletin.  www.fms-sas.co.uk/Conf12/Conf_Bulletin12-02.doc 

Contact Simon fibcon2012bookings@gmail.com or phone 0844 887 2508 or 07806 8088862 for more information.

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I must away now.  Have a good week-end, and a good week.  I’ll be back next Saturday.

Fondest wishes

Stella

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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.    Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.

Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.

Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com/

FMSSAS eNews 12.01.07

Hello everyone!

Well, the New Year has dawned.  WELCOME TO 2012.  I would like to remind you that this and all past issues of FMSSAS eNews are available here www.fms-sas.co.uk/fmseNews.html and from March 2011 onwards they are also on a blog at http://fmssas-enews.blogspot.com/  The information that I have accumulated is there for reference in case you need it.  You can also become a ‘FOLLOWER’ of the blog and you can respond by posting a comment if you wish.  General participation will be welcome.  You may like to post information about treatments you have found useful, or ones you have not!  Make comments about any of the items that are in the relevant eNews.  Ask questions of other followers and get to feel you BELONG.  We also have a Message Board at http://fms-sas.proboards.com/ where you can air your views, ask questions, answer others', offer/seek advice, make friends.  Do make use of these facilities.

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WORDz FOR THE WEEK

52.  We all have problems; the way we solve them is what makes us different.

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Kelly’s Kontributions

Cold Hands & Feet: Fibromyalgia, Chronic Fatigue Syndrome or Raynaud's?

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112c&L=co-cure&T=0&P=896

Development and Testing of the Fibromyalgia Diagnostic Screen for Primary Care.

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112c&L=co-cure&T=0&P=1939

Responses to Exercise Differ For Chronic Fatigue Syndrome Patients with Fibromyalgia

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1112c&L=co-cure&T=0&P=196

From Defiance to Discipline: How I Found Freedom Through Acceptance and Adaptation

http://www.cfidsselfhelp.org/library/from-defiance-discipline-how-i-found-freedom-through-acceptance-and-adaptation

Obstacles to Pacing & How to Overcome Them

http://www.cfidsselfhelp.org/library/achieving-consistency

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Infrastructure Network for Disability Information (INDI)

INDI South East shares disability related information, skills, resources and knowledge amongst VCS organisations to help improve the opportunities they provide for disabled people.

Use the directory to help you find other organisations working in a similar location or field throughout the South East region.

http://www.indi.org.uk/directory.php

Government's Crimestoppers campaign 'could fuel disability hate crime'

http://www.indi.org.uk/docs/Government%20crimestoppers.pdf

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Pilates and Yoga for Chronic Pain and Fibromyalgia

Exercise is a crucial component to optimally managing fibromyalgia symptoms. However, exercise as it is commonly prescribed, often results in a flare of pain, fatigue, poor sleep and low mood. Two recent studies report that the average 40 y/o with fibromyalgia has fitness findings expected for a healthy 80 y/o.  The good news is that the spiral of deconditioning can be reversed without inducing a symptom flare. The fibromyalgia research team at OHSU are pain researchers and clinicians who have developed and tested multiple exercise programs for people with chronic pain and fibromyalgia over the last 3 decades. We film real patients completing the exercise routines and offer them to you for home exercise on DVD. Our latest DVD is Pilates and yoga.

http://www.myalgia.com/VIDEOS/Pilates_Yoga_B_info.htm

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Vitamin D is better than ANY vaccine and increases the immune system by 3-5 times

Get your quota from sustenance, sunshine or supplements!  Watch this video:-

http://www.youtube.com/watch?v=xdLNMEXWTL8&sns=fb

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Alternative Fibromyalgia Syndrome Therapies: Tai Chi

Tai chi is a form of alternative treatment for fibromyalgia syndrome. Tai chi exercises are based on unique tai chi movements that are known to provide a variety of health benefits. As such, tai chi exercises can be beneficial in the treatment of fibromyalgia. But what exactly is tai chi and how can this alternative fibromyalgia therapy help to alleviate common symptoms of fibromyalgia?

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

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Work Capability Assessment independent review – year two

The Work Capability Assessment (WCA) was introduced in October 2008 to assess entitlement to Employment and Support Allowance (ESA). Section 10 of the Welfare Reform Act 2007 commits the Secretary of State to lay an independent report before Parliament each year for the first five years of operation.

http://www.dwp.gov.uk/policy/welfare-reform/employment-and-support/wca-independent-review/

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I hope this is enough to be going on with!  More next week, all being well.  Things are going well for me, I am managing to walk a little without sticks now!

Fondest wishes to you all

Stella

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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.    Anyone wishing to reproduce any of the above items in printed form should seek permission from the originators.

Wordz for the Week are from ‘Wordz for the Day’ by Donnie Kuhn, Sr.

Past issues of FMSSAS eNews can be found at www.fms-sas.co.uk/fmseNews.html and on a blog at http://fmssas-enews.blogspot.com/