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FMS eNews 13/02/2016


Facebook keeps an eye on things!  It tells me:-
"Your wise message simply has to be shared with the entire globe! You are an inspiration to your friends and you always have great advice for them. No one speaks their mind as beautifully as you! Share your message and inspire your loved ones!"
If you have a FB account, see what your message to the world is. Go to mine and click as directed (Feb 8th).
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WORDz for the WEEK

 259. Life is pointless without love and love is pointless without life.

 How appropriate for St. Valentine's tide!  Love yourself, as well as your significant other if you have one.
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 5 "Don'ts" for a Better Relationship with a Fibromyalgia/ME/CFS Doctor
Doctor-patient relationships can be tough when you have fibromyalgia or chronic fatigue syndrome. See what can sabotage that relationship.

 How Lyrica Changes the Fibromyalgia Brain
Research uncovers what Lyrica does to the fibromyalgia brain and why it can relieve pain.

 Getting a Mammogram with Fibromyalgia & Chronic Fatigue Syndrome
Concerned that a mammogram could trigger fibromyalgia or chronic fatigue syndrome symptoms? See how to prepare in order get through it well.

 5 Fun Ways to Fight Fibromyalgia Symptoms
Discover simple ways to take the edge off of your fibromyalgia symptoms right now.

 Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
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 10 February 2016 newsletter

 Almost Half DLA To PIP Motability Cars Lost Plus Your Experience Of Capita’s PIP Assessment Centres
In this edition we reveal that Motability cars are being taken away from a shocking 45% of users who transfer from disability living allowance (DLA) to personal independence payment (PIP).
In addition, following the hundreds of comments we’ve received about Atos PIP assessment centres, we’ve now obtained a list of Capita PIP assessment centres and we’re asking for your help in making sure claimants know what problems they may encounter when sent to them.
In other news, there has been outrage at the leaked disclosure that the DWP is to appoint a senior outgoing boss from tax avoiding multinational Amazon to the post of non-executive director at the DWP.
Plus there’s the news that the DWP have lost a House of Lords vote on ESA and a court of appeal hearing on the bedroom tax. But how much difference will any of it make?
Read the whole newsletter . . .
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 Urinary Incontinence and Fibromyalgia
I struggle with urinary incontinence. There I said it. That’s a phrase that is not on the top of any woman’s (or man’s) list of things they want to say out loud (or type for the world to see). Yet, for too many of us with Fibromyalgia, urinary incontinence is just another of our struggles.
In fact, a study published in December of 2015 (Jones et al.) found that women with Fibromyalgia were much more likely to report bladder issues and pelvic pain than other women of the same age. Some 93% of 200+ women surveyed said that they experience pelvic / bladder pain and issues at least some of the time.  Unfortunately, the study didn’t break it down into actual incontinence vs pain. However, another study from 2014 (Fan et al.) found that there wasn’t a higher rate of Fibromyalgia reported among women with hypersensitive bladder.
Read on . . . 
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What those with Chronic Illness Wish Healthy People Understood
There are many things that those of us with chronic illness wish our healthy counterparts could understand. There are some things the healthy will never understand until/unless they also become chronically ill. We certainly don’t wish that on them. There are, however, other things that we believe the healthy can take the time to try to understand. Here are a few things that those of us with chronic illness wish healthy people understood.
Last year I shared 6 Things the Chronically Ill Wish the Healthy Understood, today I’ve got 10 more.
Find out what they are . . .
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Fibro Warrior recently diagnosed – Christianna McCall
I love sharing the stories of some of the amazing Fibro Warriors that are out there. This week we are getting to know Christianne McCall from Cheswick, PA (suburb of Pittsburgh). She’s married and has three daughters (Dylan is 16, Zoey is 10, and Lillian is 5) and two cats (Willow and Spaceman). She’s an Architectural Rep for a formica company and she loves yoga, reading, sewing, and bargain shopping. And, She’s a HUGE Star Wars fanatic! She was diagnosed with Fibromyalgia if July of 2015, at the age of 40.
Let’s get to know more about her Fibro story….
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ARE YOU TRYING TOO HARD TO GET BETTER?
You may remember that back in October I spoke about re-evaluating how I pace. I decided to go back to establishing my baseline, i.e. what I could do in a day without making my symptoms worse. I did this because I felt as though I had plateaued in my recovery. I had reached a stage where I felt like I was taking one step forward, then one step back and getting nowhere. I’m not going to lie, at the time I felt like I was taking a massive step backwards. However, it was definitely the right thing to do and by going through this process I actually learned something interesting about what it takes to start moving forward again.
Find out what Donna did . . .
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WEEK OF FEB. 8, 2016 FIBROMYALGIA AND ME/CFS NEWS
Top Stories
Those with ME/CFS are six times more likely to commit suicide than their healthy peers, according to The Lancet.
“Valentine’s gift ideas for a loved one with chronic illness” – and here’s my own Valentine’s gift guide for fibro and ME/CFS
These nuns grow medical marijuana…(FYI: They aren’t Catholic…)
Some of these are hilarious: “If your fibromyalgia could text you, it might look like this”
This isn’t specifically fibro/ME/CFS related, but still thought some of you might find it interesting: “The top 50 [U.S.] hospitals that gouge patients the most”
And much more besides . . .
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Why Diagnosing Fibromyalgia Takes So Long
Do you think you have fibromyalgia? Are you getting frustrated living in pain and getting no answers? The truth is, diagnosing fibromyalgia is a long and difficult process. On average, it takes over 2 years. Most people see three or more doctors before finally getting a diagnosis. Even with a doctor who is very experienced with fibromyalgia, diagnosis takes time.
Read the whole sage . . .
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 FIBROMYALGIA APRIL CONFERENCE WILL BE CANCELLED WITHOUT MORE BOOKINGS

 Deadline to book is Saturday February 20th 2016
With so much more information on the Web, folks learn about their condition on the Internet and some feel they do not have the need to come to Conference for education and support. We think they miss a great weekend with education, new friends and a potential life changing experience. While those who come have a great time, enjoy overseas speakers, hear about new research and enjoy make new friends, maybe what we offer is not enough.
Our booking fee is very low, a small proportion compared with what a company would charge. It is £56.25 a day for 4 days 3 meals, 2 tea breaks, comfortable accommodation, plus conference, workshops, education, entertainment and speakers - in all £225 sharing a double room. Although we are very competitive, this year we have failed to attract more than a handful of bookings. We need about 100 bookings with a £75 deposit and booked by Saturday February 20th.
Without this we will be in real trouble and we need to face facts.
Read the rest of the article . . .  Do consider attending the conference.
PDF Version
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Low Dose Naltrexone Drug Combination Proposed for Chronic Fatigue Syndrome (ME/CFS)
In 2011 the CFIDS Association (now the Solve ME/CFS Initiative) engaged a “drug repositioning” company called Biovista to search through thousands of drugs to find a new approach to ME/CFS.
Biovista’s algorithm identified “every known gene, pathway, disease, anatomical location, cell structure and other component of potential drugs, including why and how they succeeded or failed, as well as potential side effects and drug/drug interactions”. They threw that with every bit of information on ME/CFS symptoms, pathophysiology and treatment into one pot.
Biovista’s searches had previously identified two possible new drugs for progressive multiple sclerosis as well as drugs for brain cancer, thyroid cancer and melanoma. In 2012 the firm boasted a 70 percent success rate in finding drugs that turned out to be efficacious in diseases.
Read more of the report . . .
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Diagnosing Fibromyalgia The Small Nerve Fiber Way
We’re going to take a deeper look at the oh so interesting field of small fiber neuropathy fibromyalgia (FM). A debate is raging over how big of a role SFN plays in FM. The central sensitization guys are saying probably “not much” while the immune oriented doctors/researchers believe the findings are telling us something new – and key – about fibromyalgia.
Learn more . . .
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Low Dose Naltrexone at the Forefront: The LDN Trust Conference of 2016
Edging Into the Mainstream
Low dose naltrexone (LDN) is slowly edging into the mainstream. Strong patient reports plus some small studies have made LDN a hot item in many disease communities. A book is about to be published and a standardized compound is being produced for studies. The field is slowly but surely moving forward.
Recently, the SMCI's Biovista drug repurposing project gave a LDN another boost. It's massing data mining analysis of thousands of drugs gave low dose naltrexone drug combination the top score (out of thousands of drugs) in potential efficacy for chronic fatigue syndrome (ME/CFS). (Could we see an NIH sponsored LDN ME/CFS trial?)
Read full story . . .
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M.E CLINIC // MY EXPERIENCES – PART 1 OF 2 // CHRONIC ILLNESS
Today’s post is about my experiences with the NHS ME Clinic over the past 24 months or so.  I have mentioned the odd bit here and there, but thought putting it all together in one post could be a useful resource for those who are being referred themselves and would like to know what to expect.  I have split this post into two parts as it’s quite long and I know that can be hard to deal with as someone with chronic illness and brain fog! 
Part 1    Part 2 
(Lucky those who live in Leeds.  I wonder if they deal with FM as well? S.)
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Why Do People Doubt Fibromyalgia Is Real?
Dealing With People Doubting the Legitimacy of Fibromyalgia
In the last seven years, I’ve noticed a positive change in the way people respond to hearing I have fibromyalgia. Admittedly it’s a teeny tiny change, but more people have heard of it or know someone with it — even if they don’t know exactly what it is.
Unfortunately, as is often the case in life, the negative voices still outweigh the positive and they seem to shout louder. Everywhere you look you will find someone who doubts the legitimacy of fibromyalgia, or someone who knows someone who doubts its legitimacy.
Of all the challenges we face as fibromyalgia patients, I think this is the hardest cross to bear. Not only do we cope with a myriad of symptoms and a lack of any clear treatment plan, but we actually get people telling us they think we’re making it up! Really, when you think about it, it’s scandalous.
So, why do people doubt the legitimacy and how should we deal with it?
Education, Education, Education . . .
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REVEALED! THE SHOCKING TRUTH ABOUT HOW YOU AND YOUR FAMILY ARE BEING POISONED IN SLOW MOTION

Harmful Chemicals And Toxic Pollutants Are THE Single Biggest Health Threat We Face Today.
The Food Companies Know It - Yet Astonishingly They Still Put Them In The Food Products We Eat…

  •   Toiletries And Cosmetics Companies Know It - But They Continue To Use These Cheap Poisons To Make Huge Profits For Their Investors…
  •   ...And Even Our Own Government And Health Watchdogs Approve Their Use!
  •   So What's Going On?
  •    In This Special Health Exposé, We Give You The Lowdown On All The Shabby Practices They Hope You NEVER Find Out About. . . 
Including . . .

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 The Myths, Lies & True Causes of Fibromyalgia

 The problem with fibromyalgia is that it is used when doctors can’t identify a clear medical problem. They know something is wrong, but they just can’t get a bead on it.
Because of this “murky” diagnosis, it is tough separate the fact from the fiction when it comes to Fibromyalgia.
But one of the biggest lies is that fibromyalgia can be fixed with prescriptions for anti-depressants and anti-inflammatory drugs.
Do these drugs address the problem? No. On the contrary, they make the true causes of fibromyalgia a deeper issue.
True Causes of Fibromyalgia . . .   Maybe?!
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 Whether or not you get flowers tomorrow, whether or not love is in th air, have a nice St Valentine's day tomorrow.  And I hope pain levels are low and you can keep fatigue at bay.

 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 GREEN 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 judgments, 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 although I do work in conjunction with other bloggers and Facebook groups.
If you don’t already get reminders when each new FMS eNews is posted, please send an email to fmsstella@gmail.com and you will be added to the emailing list.
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