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FMS eNews 19/12/15










"Almost there", a moving song to accompany the story of Christmas, the birth of Jesus Christ. 



The reason for Christmas is almost lost amongst the tinsel, baubles, holly, santas, reindeer, presents, food, cards and twinkling lights.  As a Christian, only the story of the new-born king is important to me.  But it is an opportunity to contact old friends and let them know we are still alive and what we have been doing.  A copy of our family Christmas newsletter is here as a .docx  and as a .pdf   Take your pick.


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WORDz for the WEEK

252. If you want to have breakfast in bed then sleep in the kitchen!


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Flu shots are always controversial and there are no easy answers. I usually get them because I also have autoimmune diseases, but this year I didn't -- and guess who has the flu? But that doesn't mean vaccination is right for you. See what you should consider, below.
Also, a look at dealing with those bugs that go around, which is especially hard for us. After that, we'll look at a range of lifestyle issues and some mental emotional things that are essential for us.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert


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EXTRA: Special Holiday Edition

I hope your holiday season has been happy thus far! To keep it that way, or set a better trajectory, I wanted to give you an extra look at some things that can really help you get through all the celebrations and into the new year!
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert


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Welcome to our final, brief newsletter before Christmas. We’ll be back again on Wednesday 13 January.
In this edition we reveal that the DWP is planning to make it much harder for claimants who need aids and adaptations to get an award of PIP. As many as 35% of claimants who currently get an award of the daily living component could miss out in the future.
The move by the DWP is partly due to the fact that claimants are winning a shocking 6 out of 10 PIP appeals, the latest figures show.
Also in this edition, we have news that ESA reassessments have begun again after a break of almost two years.

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Fibromyalgia in Art


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As Winter is suddenly upon us. I was reminded of those years when just doing normal things leading up to Christmas were far out of reach. My deepest fear, back then, was that normality was an impossible. I don't know if you are like me, but when I was ill I longed to have the energy to look after my home, be able to shop and see friends or just have a normal night’s sleep. None of these activities were about ambition, or would set the world on fire, but losing your health, as you well know, brings into sharp focus the joy of everyday things.
Don't get me wrong, I would cry and cry fearing....
  •  I would never reach my potential
  •  I would remain a shell of that vital person I had once been

And……
  •  I would have these words on a constant loop 'Is this all there is for me?’

If any of this has a familiar ring to you, then, I want to reassure you that your fears, just as mine
were, are absolutely unfounded.

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MedNexus for Patients – the Google for health

Empowering patients to understand their health
Recently I was contacted on Twitter by Nathanael, one of the co-founders of MedNexus and introduced to what looks to be a very powerful tool for those of us wanting to understand our health.
Medicine is an information science. And, thanks to the internet that information doesn’t belong strictly to the doctors. Patients not only have the ability but the responsibility to do their own research and learn about their diagnoses and the available treatments. Exciting new research developments are happening every day, leaving patients (and doctors) inundated with information and unable to keep up with the latest evidence.
Read more
Visit MedNex


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10 Questions to Help You Flip Your Script

When things start going downhill it’s easy to get stuck in negative mode. I’ve been there more times than I care to admit. That place where it’s difficult to even think of something positive and once something negative starts rolling around in my brain all I can do is ruminate on it. A while back I went through therapy for this issue and I’ve been much more positive for a while. The process of flipping my script from negative to positive was not an easy one but it can be done. There are a handful of questions that have helped me begin to make that change. No one of these will flip you entirely to positive, but the more you can think about positive things the more positively you will think. So, let’s give it a try. Here are a few questions to help you start thinking positive again.
Find out what they are . . . 


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20 helpful tips for cleaning & organizing when you’re chronically ill

Struggling to keep your house clean? I'm sharing my best tips for cleaning and organizing when you're living with chronic illness.

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Fibromyalgia and ME/CFS news (week of Dec. 14, 2015)


Hi everyone! Here's this week's fibromyalgia and ME/CFS news post. For new subscribers, each week I compile all of the top fibromyalgia and ME/CFS news into one convenient post. This week's highlights include:

  •     Study finds new antiviral/anti-inflammatory drug combo effectively treats fibromyalgia
  •     Centers for Disease Control and Prevention restores $5 million in funding for ME/CFS research
  •     Drug addicts are using gabapentin, a common fibro treatment, to get high
  •     Bank robber with fibromyalgia says Lyrica affected her moods
  •     Watsu, an aquatic therapy, might help fibro pain
  •     A fun craft project for all those empty pill bottles
  •     ME/CFS' new name makes Digital Journal's list of top science stories for 2015
  •     Why we need to stop trying so hard to get better
  •     Plus more new treatments, research news and more...

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A Chronic Christmas 2015

We are hoping to show, through this video, how we do as much as we are able to help ourselves. However, we would like to raise awareness not only of the impact on our lives but to inspire able bodied people to join us to help.




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Why not Make a Christmas Gift?


Fibromyalgia: An Invisible Illness.
Hi, my name is Beth, I have had Fibromyalgia for over 50 years.  It is a chronic condition that is both debilitating and life changing.  With widespread pain that affects every nerve, tendon and muscle. There is not a minute of any day that I am totally pain free despite many medications and gentle exercise. I am not alone, with approx 70 million other people like me worldwide, at different levels, from being able to work part time to being bed bound. I am editor/publisher of a free online magazine helping to support and raise awareness.  Together with other groups (all voluntary), we are working endlessly on campaigns to help as many people with this condition as we can. . . . . . . . I thank every one that gives even a small donation because it will make a difference. 
See the whole story 


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Novel Fibromyalgia Sleep/Pain Drug Moves Forward


Four drugs may be approved for FM in the coming years. One of them just passed a big hurdle. A novel formulation, this drug has improved sleep, pain and fatigue in FM patients - and final (Phase Three) trials are underway across the U.S.
Is the fourth drug about to be approved for FM? Find out more about a new drug that may be coming to your doctor's office, and how you can enroll in the study.


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Fibromyalgia Tops Lists of Conditions Improved In Medical Marijuana Survey

A medical marijuana (MM) provider surveyed how effective medical marijuana was at reducing pain, improving energy, etc. in a wide variety of medical conditions. The survey was rudimentary but sitting there at the top of the list of conditions improved was none other than fibromyalgia.
This is the second survey to suggest that MM can work pretty darn well at reducing pain. The survey also suggested which preparations of medical marijuana might work better. 
Find out more 


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With the stress of modern life, burnout is becoming a growing epidemic. Here is the best definition of burnout I’ve found: When your soul grows too big for the role you’re playing. - By Jacob Teitelbaum, MD

As people continue to spend more energy than they have, the problems can become more severe. When their “energy crisis” reaches a critical stage, the person will actually “blow a fuse” (called the hypothalamus) and develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or its painful cousin fibromyalgia. In most people, these two conditions are the same process, by two different names. ME/CFS was previously known simply as chronic fatigue syndrome. Recently, a committee of seven medical professionals agreed to change the name to ME/CFS to more accurately describe the disease. Many patients and doctors familiar with ME/CFS felt the name “chronic fatigue syndrome” belittled those that suffered from the disease and gave a false impression of laziness. The CDC has yet to follow suit.
Read on . . .


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Clinical Trial - Participants required

Study Name: Fibromyalgia
Clinics: Lancashire, Manchester, Staffordshire, Yorkshire
Therapy Area: Fibromyalgia
Gender and Age: Male and Female ages > 18
Description:
The defining symptoms of fibromyalgia are chronic widespread pain, fatigue, sleep disturbance, and heightened pain in response to tactile pressure (allodynia).
MAC Clinical Research would like to hear from anyone diagnosed with this condition that may wish to participate in a clinical trial to assess a potential new treatment.
The study will involve up to 12 visits and 3 telephone calls over a period of approximately 21 weeks to our Manchester, Cannock, Leeds or Blackpool clinics.
There is no cost involved and eligible patients will receive a comprehensive health screen and extended medical care including a 52 week Open Label extension which will allow participants to have on-going access to an effective but otherwise unobtainable medication.
Study participation will be in collaboration with the patient’s treating physician.


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Fibromyalgia 

Definition
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Read on . . .
Also
Symptoms
Causes
Risk factors
Complications
Preparing for your appointment
Tests and diagnosis
Treatments and drugs
Lifestyle and home remedies
Alternative medicine
Coping and support


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The Search Engine for Medicine


Cutting out the noise
Our Machine Learning algorithms utilize quantitative and qualitative metrics to vet the clinical impact and relevance of new research. We want to cut out the noise and the pseudo-science.
Comprehensive
Looking for basic information? Check out our Health Topics pages. Need evidence-based answers to your questions? Search our Articles and Reviews. We even point you to relevant discussions on Patient Forums.
See more . . .


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What is Fibromyalgia?

Fibromyalgia syndrome is a common and chronic disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms.
Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues. Like arthritis, however, fibromyalgia can cause significant pain and fatigue, and it can interfere with a person's ability to carry on daily activities.
See also 

  •   Fibromyalgia Diagnosis
  •   Fibromyalgia Treatment
  •   Fibromyalgia Management
  •   Factors

See more . . .


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The 15 Minutes of having fibromyalgia  - by Shayne E Town

  1. The minute you're diagnosed, is the minute your whole life changes.
  2. The minute you're asleep, is the minute you're awake.
  3. The minute you feel relaxed, is the minute you feel tense.
  4. The minute you feel warm, is the minute you sweat buckets.
  5. The minute you move, is the minute you ache.
  6. The minute you stand, is the minute you can't move.
  7. The minute you feel ok, is the minute you feel you could cry for no reason.
  8. The minute you ache, is the minute you're in pain!
  9. The minute you explain to friends, is the minute they disappear
10. The minute you have to leave your job, is the minute the stress starts.
11. The minute you need help, is the minute the outside world doesn't give a s@&t
12. The minute you take medication, is the minute the weight piles on.
13. The minute the pain starts, is the minute you feel you're in hell.
14. The minute you dream, is the minute the nightmares begin.
15. The minute we get the cure, is the minute we get our lives back
There is always a minute where fibromyalgia never leaves you alone!


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I will not be producing a blog next week, but I hope to be back the following week - in 2016.
All that remains for me to say now is A HAPPY CHRISTMAS, and to send you best wishes for the NEW YEAR.

Stella


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or leave your comments below under Post a Comment


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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 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.

FMS eNews 12/12/15

Some of the articles this week are looking forward towards Christmas with advice on how to cope, lots of hints and tips as well as ideas for pressies for poorly people.  Next week's will be the last blog before Christmas.  I think I will take some time off after that and give myself some breathing space.  So don't expect a blog on Boxing Day!


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WORDz for the WEEK

251.  The best lessons of life come in small daily packages ... called experiences!


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Inflammation: What's It Doing to You?

Inflammation is a tricky subject when it comes to fibromyalgia and ME/CFS. We're learning a lot more about the roles they play, though, and that new information is changing the way we think of these illnesses.
Today, we explore the role inflammation plays and why, along with some treatments for inflammation and comorbid inflammatory conditions.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert

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A Look at Fibromyalgia

This webpage would not allow copying so I can't quote but it is a comprehensive article about all aspects of Fibromyalgia and worth perusing.

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Fibromyalgia and Loneliness (A study)

As I was reading for my Personality Psych class I came across a section on loneliness, and how there is a correlation between loneliness and illness (simple things like colds and flus). In one study that had people opt to be exposed to a virus and found that those who reported stronger bonds with friends and family (and less loneliness) were less likely to get sick. Whereas those who were lonely were much more likely to get sick.  As I read that study I had to wonder if anyone had done a similar study correlating Fibromyalgia and loneliness, and sure enough I found a 2014 study from Wolf & Davis that did just that.
Read on . . .

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9 Gift Ideas for #Spoonies

Christmas is coming, Christmas is coming! (And, my is just a few days away, in case anyone wondered.) With Christmas just around the corner I wanted to share a few last-minute gift ideas for spoonies in our lives. So, if you are a spoonie you can send this post to the people who love you, and if you aren’t a spoonie but love one here’s a few ideas for Christmas, birthdays, and beyond. Each of these ideas is a product I use and enjoy so I know it will benefit others.

Find out what they are.  Want to put them on your Xmas list?

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FEDUPWITHFATIGUE.COM’S FIBROMYALGIA GIFT GUIDE

How did this happen? It seems like it was just yesterday that I was walking around in shorts and flipflops, swatting away the mosquitoes and complaining about the humidity. Somehow, someway, “the most wonderful time of the year” is here! With Christmas just a few days away, I thought it would be fun to create a fibromyalgia gift guide with some of my favorite products just in case you or your loved ones are looking for some holiday shopping inspiration.
So, here are my top picks this year

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FIBCON XMAS 2015 NEWSLETTER

We are sending a warm Christmas greeting to yourself and all of your Members. We are hoping 2016 might be the year of a cure – but we have a feeling that pigs might fly before they find a cure.
Nevertheless we will continue to fight for research funds for Folly Pogs Fibromyalgia Research UK if we are to make any headway at all. As a Christmas appeal we are asking all groups and members to consider doing some carol singing among friends and neighbours in the hope we will raise some money to our next step on the research ladder.
Read on about next year's Fibromyalgia Conference (FibCon)

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Fibro Flare Magazine New Year's Honours

Voting is now open to non members.  You can still vote TODAY ONLY.  This is the second round and the winner will be chosen from this short-list of 7.
These are the nominees

  •  Gemma Flood
  •  Shayne Town
  •  Tracey Napper
  •  Joan McParland
  •  Stella Bernardi
  •  Angela Bentley
  •  Larry Power

You can read about the candidates here 

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Save your stamps

Will you please save your used stamps from Christmas cards (as well as from letters and parcels) and send them to Citadel Stamps to help raise funds for FMA UK.

Send your stamps to:
      Citadel Stamps
      In aid of FMA UK Stamp Appeal
      PO Box 6107
      Stromness, KW16 9AB
Thank you

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Have A Healthy Holiday!

To create the ultimate holiday eating guide, we tapped three nutritionists for their best and worst picks. Check out which foods are worth skipping, and which you should enjoy to the fullest.

Read more here. . .

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Getting Grounded: Could Earthing Work for Fibromyalgia and ME/CFS?

Earthing advocates proclaim that we've lost our connection to Mother earth - not in some spiritual way - but to the negatively charged electrons the earth provides. They assert that when we lost our connection to our natural ground (the earth) we lost an important inflammation fighter at the same time.
Could they be right? Or is this just more new-agey hype?
Check it out and let us know what you think


Clint Oder on Earthing​


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Our nutritionists' favourite nourishing meals

Winter is well and truly here and Christmas is just around the corner; this time of year often results in poor food choices and ‘comfort’ eating. Whilst it’s not always possible to be virtuous (Christmas parties and get togethers with friends and family are particular problems…) we can make sure we eat well the rest of the time.
It’s particularly important to opt for nutritious meals at this time of year to keep your immune system strong and energy levels up – we all need extra energy for Christmas! With that in mind, we’ve complied a list of our nutritionists’ favourite ‘comfort’ meals along with a recipe for you to try them out yourself!
There are four to tempt you

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5 Herbs That Improve Memory

Memories contain the story of our lives. We like to reminisce about the wonderful moments we share with our loved ones, the exciting milestones that define us and our unique achievements. Memory and learning go hand-in-hand to assist us in our professional lives where we need to recall our knowledge to get crucial tasks done.
Nowadays, the stresses of modern living seem to come together as a conspiracy to impair our memory functions. High blood pressure, poor thyroid function, drug interactions and occasional bouts of forgetfulness cause our minds to go blank when we need to recall stored memories the most. We just have too much to deal with at any given time.
Nature infuses us with life in so many ways, and we can turn to the following five herbs to help us in revitalizing our minds to take back those memories and make them vivid as they always were:
  1. Gotu Kola
  2. Gingko Biloba
  3. Bacopin
  4. Blessed Thistle
  5. Rosemary
Read all about them

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How Fibromyalgia Impacts Your Family

We Are Not the Only Ones Who Are Suffering
When you are suffering, when you are in pain, when you walk around exhausted all the time, it is very easy to get wrapped up in yourself and your own suffering.
It is easy to center your thinking on how your life has been affected by fibromyalgia – this is completely normal human behavior. But I feel it is important to remember that we are not the only ones who are suffering.
Our family and our loved ones are also very much affected by this terrible illness. They often have to make sacrifices to help us. They suffer because we suffer. It would be unhealthy for our relationships with them to become consumed with our own suffering, and not recognize theirs.
Read more . . .

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Fatigue & Brain Fog: Could You Have a B-12 Deficiency? 

A feeling of being tired all the time. Problems with memory and concentration. Trouble sleeping. Diarrhea and/or constipation. These can all be important signs of the body's need for more vitamin B-12.
Vitamin B-12 (cobalamin) is an essential nutrient, meaning it is required for normal body functioning but cannot be produced by the body. Therefore, it is necessary to obtain the B-12 our bodies need through the food we eat and/or dietary supplements.
A vitamin B-12 deficiency is relatively common - thought to affect approximately 15% of the general population. That percentage goes much higher among people with chronic illness.
Because so many people are deficient in B-12 - particularly people with fibromyalgia and ME/CFS - and because a number of FM and ME/CFS specialists recommend high doses of B-12 for their patients, ProHealth's founder, Rich Carson, set out to develop the most potent B-12 supplement available.
Read on . . . .

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The Ancient Egyptian secret health weapon that’s in your cupboard

 You’ve probably got these two health remedies in your kitchen.
They’re the stuff of legend – used and trusted since Ancient Egyptian times.
Combined, these remedies are nature’s secret weapon against ulcers, colds, sore throats, stomach aches and infections
Find out what they are

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To end on a personal note: I recently had a health M.O.T. with Horsham Wellbeing.  I discovered that my metabolic age is 65!!  Not bad for an eighty year old!
See you next week
As ever
Stella

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Contact: fmsstella@gmail.com
or leave your comments below under Post a Comment

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N.B. The links on this my FMS eNews blog are in 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 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.