September heralds the UK's Fibromyalgia Awareness Week. Are you or your support group doing anything to mark the occasion? If so, do let me know. FMSSES is also interested in your activities as outlined in their Newsletter below. My group in Horsham is having two events, both organised by Alan & Jackie Bull. They have both had 'noughty' birthdays recently.
They are celebrating with a fundraising Birthday Party on 7th. Tickets are sold out, so if you haven't got one you can't go!!
They have also organised an awareness stall at Newbridges Nurseries, from 10-4 on 14th which will also hopefully raise some funds for fibromyalgia research. All moneys raised from both events will go towards the FMAUK's research programme.
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WORDz for the WEEK
182. The best way to prepare for life is to begin living it. . .
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From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome
Have you noticed a change in your feelings toward your romantic partner since starting a new medication? What about your sex life? Get a look at what a new study reveals, and how the impact may depend on your gender. That's below.
Also this week, the agony I went through before getting a new diagnosis, plus some back-to-school and other seasonal content, both up top and down in Featured Articles.
Take care of yourself!
http://specials.about.com/service/newsletters/chronicfatigue/3b53e921c70001ea0d0031a6.htm
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The Folic Acid Controversy, MTHFR and Chronic Fatigue Syndrome
In the 1990’s, the US and UK mandated the enrichment of all grain products with folic acid in hopes of reducing the occurrence of neural tube defects. In the decades since neural tube defects have indeed declined yet little long term research has been done to determine the effects excess folate might have on non-pregnant adults.
The tolerable upper limit (TUL) for folate is set at 1,000 mcg/day for adults, but with the overconsumption of fortified grain products many may exceed this threshold. Recent studies are now taking a closer look at potential health risks of folic acid fortification for adults.
Folate is not only a concern for adults, but may have particular relevance for some people with Chronic Fatigue Syndrome (ME/CFS).
http://www.cortjohnson.org/blog/2014/08/12/folic-acid-controversy-mthfr-chronic-fatigue-syndrome/
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Models Suggesting Chronic Fatigue Syndrome Is “Amenable to Intervention” Provide Hope: Dr. Broderick Talks
Chronic Illness … er, “Impaired Homeostatic State”
“Illnesses such as these continue to defy a conventional one-piece-at-a-time approach.”
Broderick believes chronic illnesses such as ME/CFS and FM, autoimmune illnesses, diabetes, etc. involve a kind of ‘homeostatic reset’ that enables the body to survive but also includes a kind of ‘stuckness’. Chronic illnesses, in other words, are chronic for a reason. If Broderick’s right, it’s possible that every chronic illness reflects a homeostatic state that is resistant to change.
Will modeling clear up the maze that is ME/CFS?
With the computational power and methods available now, it’s not just about NK cells or T-cells — it’s about how NK and T-cells and B-cells and hormones all work together to produce a disease. You still need the data on NK cell problems because that informs the model but the big picture is coming from the computational end. In fact Broderick would argue you will never understand a complex disease like ME/CFS unless you look at it in it’s entirety – and that means modeling it.
Read more: http://www.cortjohnson.org/blog/2014/08/13/models-suggest-chronic-fatigue-syndrome-amenable-intervention-dr-broderick-talks/
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Tracking Your Sleep For Better Health in Fibromyalgia and Chronic Fatigue Syndrome
Validation at the Doctor’s Office
For me, using my Google Android FibroMapp app to provide sleep report to my GP was the start of a whole new relationship with my doctor. When she saw that on average I was up 14’xs a night (and that my pain levels were at at least 8, not to mention my major brain fog, perception issues and more) she started to take my experiences very seriously.
The first thing was to try medications to help me sleep. I can, hand on heart, say that I pretty much tried everything – OTC, Rx and herbal/supplements. By using my Health Rising FibroMapp to track my sleep experiences I could tell exactly what was – and wasn’t helping. (In fact NONE of the above helped!).
Read more: http://www.cortjohnson.org/blog/2014/08/13/models-suggest-chronic-fatigue-syndrome-amenable-intervention-dr-broderick-talks/
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The Fibromyalgia Mimics – When Your Pain is Not Due to FM: How Stress Becomes Real Pain #3
As we continue our series on Dr. Martinez-Lavin’s book “Fibromyalgia: How Stress Becomes Real Pain”, he takes us on a tour of pain and fatigue disorders that look like Fibromyalgia and are often misdiagnosed in people with FM (or vice versa).
Being given heavy duty immune suppressants or undergoing surgery to no avail is not a happy thing, particularly when you’re already suffering. This list will hopefully alert people to the pitfalls of misdiagnosis in disorders like FM and ME/CFS.
Read on: http://www.cortjohnson.org/blog/2014/08/18/fibromyalgia-mimics-pain-due-fm-stress-becomes-real-pain-3/
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Epigenetics Study Highlights Immune Issues in Chronic Fatigue Syndrome
Will the Real Immune Issue Please Step Forward?
Immune-SystemPatrick O. McGowan, PhD, is an assistant professor in the Department of Biological Sciences, University of Toronto at Scarborough. He starts off his paper by listing the array of immune problems found in ME/CFS – some of which seem almost at odds with each other. There’s the proclivity towards Th2 (anti-inflammatory) dominance, but pro-inflammatory findings are also found. There’s natural killer cell dysfunction found in the innate immune response but there’s also the cytotoxic T-cell findings in the adaptive immune response.
Read on: http://www.cortjohnson.org/blog/2014/08/20/epigenetics-study-highlights-immune-issues-chronic-fatigue-syndrome/
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Start Your Fibro Fitness Plan
If you haven't exercised in a while, getting started can be tough. Ease into your new workout routine one step at a time.
Read Article ›
• What Are Fibromyalgia's Tender Points?
• Common Misdiagnoses of Fibromyalgia
• How Tai Chi Can Help Your Joints
http://view.messages.webmd.com/?j=febf107470670c75&m=fe9f13707564027c77&ls=fe591c767367047c7d12&l=ff921178&s=fe5c1679766306787412&jb=ff6e157075&ju=fe9413717466037b76&r=0
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Simple Tips for Healthy Joints
You may have less pain if you keep your joints strong and flexible. Try some of these easy ideas to help avoid injuries and soothe aches.
View Slideshow ›
• 7 Signs of Painkiller Addiction
• Migraine Food Triggers
• Pain Meds: A Pharmacist Answers Your Questions
http://view.messages.webmd.com/?j=febf10747d630575&m=fe9f13707564027c77&ls=fe591c767367047c7d12&l=ff921178&s=fe5c1679766306787412&jb=ff69177076&ju=fe931371766d017f74&r=0
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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.
More promising still, new technologies have made curcumin 65X more bioavailable, while novel combinations with other time-tested botanicals appear to achieve powerful synergistic effects. These formulations may bring new hope for fibromyalgia and CFS/ME sufferers seeking natural relief from brain, joint and body concerns.
http://www.prohealth.com/ep/EP081514/index.cfm
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New Look. New Feature. Same Community.
We updated the health tracker and added a new feature: Labs and Metrics. You can now keep a record of blood test results, hours of sleep, number of steps taken, or anything else with a number associated with it. The format is simple, just name the metric and then add in the values and units. Your results will be displayed in the same easy-to-use graph format as symptoms and treatments so that you can see changes over time.
https://madmimi.com/p/a3be25?fe=1&pact=24522137291
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Great news for Fibroduck fans!
Our exciting new phone App is coming very soon
Hello Fibroduck fans,
We're very excited to tell you that the new Fibroduck phone app is currently under construction and should be with us in around six weeks maximum.
The Fibroduck phone app will work across ALL platforms, and will include a message board so that users can talk to each other from within the app itself, along with many other useful features.
You'll love our new handy App and once we've raised enough money to put on the research, we'll expand the app so that researchers can track those taking part.
We'll keep you guys updated as to the release date
More details to follow
Thanks for reading
http://us8.campaign-archive2.com/?u=d3db286ab44a6d0375795c4e3&id=aa37d28590&e=8012b6322b
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Feet on the Ground
Harness powerful physical and mental benefits by going barefoot.
Michael Sandler was in-line skating when a child stepped into his path. Swerving to miss the toddler, he crashed into the concrete—breaking his hip and arm, and shattering his left femur.
“Coming back from that injury, I was told I might lose my leg and wouldn’t be able to run again,” he says. He ended up with a titanium femur and a significant leg-length discrepancy. When nothing else in his rehab worked, he tried something radical in its simplicity: he took off his shoes. Today, Sandler credits going barefoot with reducing his inflammation and swelling, and helping him to regain a sense of balance.
Sandler, the author of Barefoot Walking and Barefoot Running, says the experience changed how he thinks about his feet—not as weak things we need to coddle, fit with orthotics and inject with steroids. Instead, he suggests we should all let our feet do what they are physiologically designed to do.
See more at: http://spiritualityhealth.com/articles/feet-ground
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How Magnetism Affects How We Think and Feel
Alteration of magnetic fields can change the behavior of everything from individual neurons to overall behavior...and even how humans are connected to each other.
How can anyone not love magnets? They’re about as close as we can get to magic, with their ability to move things around invisibly and defy gravity by picking up nails right off the floor. And how about the North Pole, which manages to make a tiny compass needle thousands of miles away point toward it?
Physicists long ago determined that electromagnetism—which is responsible for interactions between charged particles—is one of the key forces in the universe. Now neuroscientists are expanding our knowledge of the effects of magnetism on humans and how its manipulation can diagnose mental disorders and alter the ways we think and behave.
See more at: http://spiritualityhealth.com/articles/how-magnetism-affects-how-we-think-and-feel
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Do You Experience Chronic Fatigue?
It’s not uncommon to experience occasional tiredness, especially if you have had a restless night, have been sick, or have engaged in heavy physical labor. However, if you feel tired all the time despite your best efforts to get enough sleep, you may be experiencing chronic fatigue.
Chronic fatigue syndrome (CFS) is a disorder characterized by a persistent feeling of tiredness that is not relieved by rest and lasts for a period of at least six months. CFS goes beyond just feeling tired; it causes individuals to feel so run down that they find it difficult – and, at times, impossible – to function and engage in daily activities.
Read on: http://optimalwellnesslabs.com/do-you-experience-chronic-fatigue
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Newsletter No. 7
Your story for FM Awareness Week
On page 4 of this edition is information about UK Fibromyalgia Syndrome Awareness Week which takes place in early September. This is such a good opportunity for local support groups or individuals to build on national publicity by organising a something locally to increase awareness.
We asked you to tell us your plans for events which we in turn can publicise on the website.
Very important.
Equally important, we are keen to generate as much publicity as possible afterwards by reporting on events which took place, both on the website and in the newsletter.
So, what will be your story? Email your plans for an event to chair@fms-sas.co.uk and editor@fms-sas.co.uk for immediate publicity on the website. Please tell us as soon as possible for maximum exposure and in any case no later than Thursday 28 August.
Read the rest of the newsletter: https://dl.dropboxusercontent.com/u/17459523/FMS_eNews/FMSSES_Newsletter-14.08.pdf
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A personal note from Vicky
I've had a busy week!
As a lot of you know I went on a day 10 cleanse recently and lost weight while eating well and felt fantastic. So inspired with this that I was invited to undergo some additional nutritional training via daily a webinar. It's all about optimal nutrition that is nutrition at cellular level. There are obese people who are actually suffering from (type B) malnutrition. It's all sobering stuff.
Read more: http://us4.campaign-archive1.com/?u=1f0fb2b9eada51a6fa54509ba&id=d246bea826&e=2a0fc40be9
Also:
Education: HIIT Workouts
Video of the week: Pilates Exercise: The Criss Cross
Success Story: Rosie Christie
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GMI Daily Newsletter: 8/16/14
GMI Daily Newsletter: 8/19/14
GMI Daily Newsletter: 8/20/14
GMI Daily Newsletter: 8/21/14
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What more is there to say? I just hope some of the above will help you to achieve some improvements to your health. Keep hoping!
Fibro hugz
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.
My ME/CFS History
Fibromyalgia and ME/CFS have many similarities but they also have some distinct differences. Learn what the research teaches us about where they shake hands and where they go their separate ways.
List of FMSSES Trustees & Group Leaders
For those who haven't seen me in the past week you'll know that I was unsuccessful in my bid to take part in the next series of 'The Island'. Many of you thought I was crazy to even contemplate it and maybe I was. It was though an interesting experience to go through the selection for a reality TV show. Lots of us there, were interested in seeing how far we could push ourselves but of course the television company had another agenda. They want a diverse range of people, the more extreme the better judging from the people from my group that went through to the next round. I enjoyed the last series and will certainly watch the next series with extra interest.
