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FMS eNews 28/02/15

The owners of a number of Fibromyalgia websites, mainly Facebook pages but including FMS eNews, have banded together to pool ideas to create a logo for Fibromyalgia Awareness Day, 12th May.  This is the result of their collaborative efforts.

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WORDz for the WEEK

211.  Each day is a journey; make sure it reaches its destination.

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New Name, Criteria for "CFS"; FMS Brain Discovery

A new 9,000-page report is out that suggests new diagnostic criteria and a new name for chronic fatigue syndrome. See what's good and not-so-great about it, below.
Also this week, a newly discovered feature of the fibromyalgia brain that explains why we pay so much attention to our pain. 
(Spoiler alert: we're not "whining!") Down under "More from About.com," you'll find links to categories with lots of great articles for you. I hope you'll explore a little!
Take care of yourself!

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Carers Allowance Digital Service – Information Note

The Carer’s Allowance Digital Service has been live since October 2013. It is a simpler, clearer and faster way to make a claim or report a change of circumstances.
Over 150,000 carers have now used the Service with excellent feedback.

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8 Natural Supplements for Fighting Fibromyalgia

Finding the right treatment for your symptoms can be a long and painful road. For many, prescription medications become the first line of defense against Fibromyalgia. These can include analgesics, anti-depressants and even anti-seizure medications. Unfortunately, many of these medications leave patients subject to unpleasant and sometimes harmful side effects.
Another promising line of defense – with far fewer adverse side effects – is dietary and herbal supplements. Supplements can help address some of the underlying causes of your symptoms and provide more lasting relief from pain, fatigue and discomfort. 
Supplements can also help correct nutritional deficiencies in your diet, often times resulting in a boost in energy levels and mood.
You may be wondering what supplements are most effective for fibromyalgia. Lets take a look at some of the most common and effective supplements used to treat the symptoms of Fibromyalgia:

  1. Vitamin D
  2. Fish Oil (Omega-3)
  3. SAMe
  4. Ribose
  5. Magnesium
  6. B- Complex Vitamins
  7. 5-HTP
  8. Rhodiola Rosea

These are just a few of the many dietary and herbal supplements used to help treat the symptoms of Fibromyaglia. When combined with other natural methods of treatment such as diet, nutrition and exercise – the results can be both powerful and lasting.

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A New Name For Chronic Fatigue Syndrome? The Community Weighs In 

About 4500 people saw the survey and about 550 took it. The survey consisted of a ranking mechanism that allowed the participants to rank their favorite names from first to last. The survey tool from Gravity Forms  then produced an aggregate score. Survey Round I ME was the clear winner with Ramsey’s Disease and ME/CFS  in the next tier and CFS and SEID in the last one.

See the survey results.

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When Touch Hurts: An Allodynia Overview 



Allodynia is a particularly nasty and mysterious problem. One of the first things to get about allodynia is that it serves no useful purpose. Other types of pain serve to protect an injured area but there’s nothing protective about a condition that causes results in the touch of clothing on the undamaged skin causing extreme pain. It’s an aberration pure and simple and it’s becoming a bigger and bigger one over time. With about twenty percent of the population suffering from a chronically painful condition, pain has become a huge problem in our society. With the population aging and rates of diabetes – a major cause of allodynia – skyrocketing, pain will sure become an even bigger problem in the future. In this blog we take a look at a recent overview of allodynia and see where we’re at with this perplexing condition.

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Powerful New York Times Op-ed Strikes Blow For Chronic Fatigue Syndrome 


The New York Times is the most influential paper in the English speaking world. It gets hundreds of op ed applications a day, and it just chose to publish a powerful, powerful editorial on chronic fatigue syndrome. Coming on the tails of the Institute of Medicine report Julie Rehmeyer, a journalist with ME/CFS, hit’s all the right notes in her piece aptly titled “A Disease Doctors Refuse to See” (literally and metaphorically). Julie asks whether the IOM report will result in doctors and the NIH taking this disease seriously or will they chose to continue not to “see” it? Will they ignore the  widespread distress out there and continue doing nothing about it?


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9 Ways To Fall Asleep Faster (Without Counting Sheep)

If you feel wide awake when your head hits the pillow at night, you're not alone. Approximately 60 million Americans report having experienced insomnia in any given year, according to the National Institute of Neurological Disorders and Stroke. 
Even worse, 40 million Americans suffer from long-term sleep disorders.
Missing sleep is nothing to yawn about. "Chronic sleep deprivation has lots of negative consequences," says Sonia Ancoli-Israel, fellow of the American Academy of Sleep Medicine and professor of psychiatry at the University of California San Diego School of Medicine. She notes that the health risks associated with missed Zzs can include poor cognitive function, problems with attention and concentration, dementia and an increased risk of heart disease.

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10 reasons to quit sugar! 

Sugar has now firmly replaced fat as the number one diet enemy; carbohydrates in particular are seen as the devil in disguise. Is this just another fad celebrity diet craze or is there some truth to extracting our sweet tooth? In all honesty, and according to recent, cutting edge research, giving up sugar is the single most health-promoting thing you can do.

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Wellness HealthWatch - February 25th, 2015
Top Anti-Inflammatory Foods, Herbs, and Spices 

Did you know there was a pharmacy in your kitchen? Here are some common spices and herbs that can inhibit inflammation. 

Read More » 

More articles here » 

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25 February 2015 newsletter
One Million Medicals On The Way; New ESA Scores Hit Women Hardest

WARNING: THERE ARE REFERENCES TO SELF-HARM AND SUICIDE IN THIS NEWSLETTER
Atos replacement Maximus say they will carry out one million work capability assessments (WCAs) in a single year – starting on Monday.
Meanwhile, a new scoring system has been created to decide if claimants with mental health issues can get into the support group because of a risk of harm to themselves or someone else. The system has been deliberately designed to make it more difficult for women to qualify than men.
There have also been important changes to the way health professionals estimate how far claimants can walk or ‘mobilise’.

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Nicola's Note

Hello everyone, Spring is just around the corner! Hoorah. Early on in the month we are delighted to be celebrating International Women's Day on 7 March with qigong for women instructors worldwide and our teacher Tina Zhang in NYC.  Also this month there are two new beginner courses starting in Horsham; Phoenix Daogong and Chen Tai Chi (click on the links above for more details).   Please view over the March 2015 calendar and the schedule here. Thanks for reading, will look forward to seeing you in class soon. 
Regards, Nicola.

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A personal  note from Vicky

I was out on Valentines evening with Kay Baxter and friends to celebrate her noughty birthday at Taormina on the High Street.  I wasn’t aware the place existed before but will definitely go again.  The following day Richard and I went to Lewes for a wander round.  I have lived in Sussex for over 30 years and had actually never been there before I’m ashamed to say.  
Another place to go back to.  The picture shows the view from the car park - someone was feeling romantic :-)

Also:
Education: Olive oil vs coconut oil - which is healthier?
Video of the week: How to use spiky balls for shoulder release.
Success Story: Margaret Daniels

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The body feeling like a bruise is a good description.  The article from Health Rising about Allodynia is particularly relevant.
I have just heard that this has been the sunniest winter in the UK since records began.  May the sun continue to shine!
All good wishes
Stella

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N.B. The links on this my FMS eNews blog are in the BROWN text, usually in the title of each article but occasionally elsewhere too. Some titles have no links in which case the title is in PURPLE like the dividers.  This blog gives just a taster of each article which can be viewed in full through its link.  If you have any navigation problems, let me know. 
I would like to point out to you that the information in the 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.

FMS eNews 21/02/15

Just a reminder that the links are in the BROWN text, usually in the title of each article but occasionally elsewhere too. Some titles have no links in which case the title is in PURPLE like the dividers.  This blog gives just a taster of each article which can be viewed in full through its link.  If you have any problems navigating, let me know.


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WORDz for the WEEK

210. There are always two paths in life to go on; while one of them is easy.  The only good thing about the easy path? is that it's easy.


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Drug Dangers You May Not Have Considered; Drug Profiles

You probably know that narcotic painkillers come with a risk of side effects and addiction, but have you ever thought about how they could make you the target of criminals? Or what risk they pose to people close to you? What about accidental overdose? Get a look at these dangers and what you can do to minimize them, below.
Also this week, profiles of some of the common drugs doctors prescribe for fibromyalgia and chronic fatigue syndrome (in alphabetical order,) both up top and down below.
I hope you like the new look of the newsletter! It should function just like the old one but (I hope) be a little cleaner and easier to navigate.

Take care of yourself!


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Fibromyalgia is Real [Kindle Edition]

This booklet has been edited by Gemma Flood.  It contains the stories of  a  number of fibromyalgia sufferers, writing 'from the heart' and proving that Fibromyalgia Is Real.  This link is for the Kindle version, but a printed copy can be obtained from Gemma by emailing floodlight@eircom.net.   The booklet has sold worldwide in unprecedented quantities and has been donated to a multitude of doctors. 


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How to Diagnose Fibromyalgia









and other articles.


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5 of the Most Common Treatment Plans for Fibromyalgia


One of the most overwhelming realities of fibromyalgia – besides the constant pain and other symptoms – is that there is currently no known cure. Though a cure may not yet exist, it does not mean one should give up pursuing the various treatment options available. In fact – many fibromyalgia sufferers have found ranging levels of relief from various forms of treatment.
These treatments can range from prescription medications to alternative therapies like acupuncture or meditation – and everything in between. 

  1. Analgesics (Painkillers)
  2. Anti-Inflammatory Medications
  3. Anti-seizure Medications
  4. Alternative Therapies
  5. Diet & Supplements

Though there isn’t a cure for fibromyalgia – there are a number of treatment options to consider. Speak with your doctor about the different options available to you and discuss which plan is the right fit for you.


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The Pain Brain: Hippocampal Atrophy Found in Fibromyalgia 


The Pain Brain Reduced volume in the hippocampus is just the latest of many brain finding in fibronyalgia Sometimes you’ve got to ask wonder where is it going to stop with fibromyalgia (FM) and the brain? Reductions in the volume of “gray matter” (the neuronal cell bodies and glial cells as opposed to the long nerve fibers) have been found in the insular, anterior cingulate cortices and the amygdala in the brains of FM patients. Other issues have been found in the thalamus, the basal ganglia, the  parahippocampal gyrus,  the premotor cortex, motor cortex, the somatosensory cortices and the prefrontal cortex in the brain. Other abnormalities have been found in the connections between various parts of the brain.


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Changing the Conversation: the IOM Reports Sparks Re-evaluation of ME/CFS in the Media 


I assert that for ME/CFS it’s all about changing the conversations or narratives around it that are keeping it poorly funded and mostly ignored. Once those conversations change everything else will change. What was impossible beforehand will suddenly become not just possible but natural.  In this blog we check out what conversations the IOM Report “Beyond Myalgic  Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness” is triggering in major media outlets. Very quickly we can see two major messages the media is taking from the report are:  Chronic fatigue syndrome (or SEID) is a real and serious disorder that has been misunderstood and underfunded for years. It’s main feature is not fatigue but exertion intolerance: i.e. the inability of patients to exert themselves without getting hammered.


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The Name, the Name, the Name….What Name Would YOU Pick? 


Lenny Jason had little good to say about the new name in a recent article “How Disease Names Can Stigmatize“. Prominently highlighting a slew of negative comments (” It is pathetic, degrading and demeaning”, “Absolutely outrageous and intolerable!”) at the head of the article, Jason stated that “patients and advocacy groups from around the world perceived this latest effort to rename their illness as alienating, expansionistic, and exploitive.” Nobody said picking a new name would be easy.. That wasn’t quite the impression we got at Health Rising. The name was certainly controversial but a significant portion of readers did not object.  In a poll attracting about 750 people, a solid majority (43-29%) felt it was preferable to “ME/CFS”. Fifty percent felt the name would at least moderately help their doctors to better understand their illness.


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Diagnosing Chronic Fatigue Syndrome the IOM Way: the IOM Report #3 


The proposed new name for chronic fatigue syndrome really jumped out in the IOM report but the report provides several other difference making aspects.  It proposed new clinical and research diagnostic criteria, proposed chronic fatigue syndrome should be placed in a different ICD category and more but first let’s take one more look at the name. The Name “It’s clear (the name) chronic fatigue syndrome does tremendous disservice to these patients” Dr. Ellen Clayton The committee followed a protocol that proposes naming a disorder of unknown cause after the core features of the disease. It was explained to me and others by one of the study members that none and I mean NONE of the findings in ME/CFS – as tantalizing as they are – are conclusive enough or validated well enough to be included in a name. Take natural killer cell dysfunction, something  that we all probably take for granted typifies ME/CFS.  The committee concluded that the studies on NK cell dysfunction are too small and too few to be able to confidently say that it lies at the core of ME/CFS. If they can’t say that about NK cell dysfunction I can’t imagine they can say that about anything. 


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12 Habits Of People Who Never Get Tired


If you've ever wanted to be that person -- the one with seemingly limitless amounts of energy throughout the day, the one who's never been accused of "looking tired," the one who's never uncaged a primal-sounding yawn in the middle of a meeting -- you're going to have to adopt some healthy sleep-related habits. If you think good sleep is achieved by resting your head on a pillow and closing your eyes, you are wrong.
To be a well-rested human being, you must fashion a routine that promotes energy throughout the day and sleepiness come sundown. This means acclimating to a proper bedtime, regulating your caffeine intake and maybe even investing in a few pairs of sleep socks. Check out the habits of well-rested people below, and start dreaming of better sleep.


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You are what you digest


A certain (Dr) Gillian McKeith published a book a while ago entitled “You are what you eat”. Following an even more popular TV show of the same name, the phrase gained immense popularity but as it turns out, ‘The Poo Lady’ (as she also came to be known) was not quite right.
Obviously someone who has misled the public about her real qualifications and sold unlicenced herbal supplements for sexual function should not be the measure of truth, nevertheless her concepts influenced our ideas of nutrition and health. Actually, taking a closer look inside the toilet bowl can tell you a lot about your digestion but rummaging through your faeces should not be used as a diagnostic tool!
More accurately, the phrase should read “You are what you digest…absorb and metabolise”.


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Chronic fatigue IS 'a real and serious disease': Doctors draw up new guidelines on how to diagnose the condition


Comments came from US government advisory group Institute of Medicine
Experts on the panel sought to redefine chronic fatigue syndrome
Have now set five main symptoms as simple criteria for doctors to use
'Chronic fatigue is not a figment of the imagination,' said lead report author.
Report argues condition should be renamed Systemic Exertion Intolerance Disease, or SEID, to reflect that symptoms worsen after exertion.


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Fibromyalgia Support Awareness

About this Petition
Please sign this petition to help raise awareness of the condition known as fibromyalgia and how essential support is for those who have it and their significant others.
Fibromyalgia is a complex condition that's difficult to understand.
The symptoms deeply affect those that have it and also those around them, partners & family.
We need governments and health departments to recognise this illness for what it is, a debilitating life-changing illness for which there is presently no cure.


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Fibromyalgia HealthWatch

You Might Have Fibromyalgia if...

Sometimes it's good to look at the funny side of serious subjects. While fibromyalgia itself is a serious illness, there are some humorous aspects. Our fibro-fog experiences alone could keep an audience laughing.
I used to have a t-shirt that said, “Angels fly because they take themselves lightly.” Let's take a lesson from the angels and take a minute to laugh at ourselves. For example, here are some telltale signs that you might have fibromyalgia.
And many more articles here


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Spring Beginner Tai Chi Courses




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A personal  note from Vicky


I’ve finished my detox and seem to have had a bit of a ‘tox’ week.  Celebrating my son’s 29th birthday with a couple of family meals and wine.  I’m a bit of a light weight and it went straight to my head and sent me to sleep.  I’ve been sleeping well but I think we all have times when sleep evades us and so todays article is about a mentor to help that. 
Also:
Education: How often to I hear people say that they can’t sleep?
Video of the week: How to use spiky balls for gluteal release.
Success Story: Linda Stewart


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The blog facilitates your responses through the Comments section at the end.  Do feel free to use it.  I think there has only been one comment - ever!  I do however appreciate the emails that are sent to me from time to time.

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.