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FMS eNews 14/03/15


May I wish all of you who are mothers a happy day tomorrow with or without your families. 
What the church has always called Mothering Sunday has been commercialized into Mothers Day.  
Whatever we call it, we honour our mothers whether they are in this world or the next.



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Fibromyalgia Awareness Day Countdown


Eight weeks to go before Fibtomyalgia Awareness Day!  Plans are being made worldwide.  Ideas abound but decisions on what to actually do are not quite as definite.
The Horsham Fibromyalgia Support Group are holding a celebratory dinner, with everyone hopefully attired in purple and yellow, the international and national colours that represent fibro.  I would like to hear what other groups are doing on May 12th.  You can use the Comments facility at the end of this blog.

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WORDz for the WEEK

212.  I sometimes give myself admirable advice, but I seem to be incapable of taking it.


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Telephone Struggles; Which Name to Use?

Is talking on the phone harder than it used to be? See what gets in the way of this kind of communication for us and what can make it easier, below.
Also this week, a note on terminology for chronic fatigue syndrome, including why I use the names I use; down under More from About.com, I've included information on some of our symptoms.
Take care of yourself!
Adrienne Dellwo
Fibromyalgia & Chronic Fatigue Syndrome Expert


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Does Your Body Lack These 7 Nutrients? – Deficiencies That Make You Sick

Do you have existing health problems that can’t seem to go away? Irregular sleep, poor immune system, hair loss, fatigue, or other serious chronic health problems?
Even though there are plenty of foods today for Americans, the CDC’s Second Nutrition Report, an assessment of diet and nutrition in the U.S. population, concludes that there are a number of specific nutrients lacking in the American diet.
These nutrient deficiencies can cause many health problems in your body and wreck your overall well-being. Below are 7 of the common nutrients that most people lack:
Iodine

  • Vitamin B12
  • Vitamin C
  • Magnesium
  • Iron
  • Zinc
  • Vitamin E

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5 Myths About Fibromyalgia That People Still Believe

You’ve probably heard them all before – you may have even believed some of them. Whether you know someone with fibromyalgia or suffer from it yourself, you’ve probably been exposed to myths about the condition. Though awareness is spreading and the medical field is gaining new insights into fibromyalgia – many of these early myths or misconceptions are still being perpetuated.
While some misconceptions may always persist, it is important to separate fact from fiction. Knowing the facts about fibromyalgia can help the sufferer understand his/her condition better and help the outside observer to be more understanding towards friends or loved ones with fibromyalgia.
Lets take a look at five of the most common myths or misconceptions about fibromyalgia:

  1. It’s All In Your Head
  2. Pain is the only symptom
  3. Only middle-aged women get fibromyalgia
  4. Fibromyalgia isn’t treatable
  5. Fibromyalgia isn’t a real diagnosis

Knowing the truth about fibromyalgia is important for furthering awareness and giving both insiders and outsiders alike an accurate perception of this often-misunderstood condition. Dispelling the myths about fibromyalgia can help improve the lives of fibromyalgia patients by removing preconceived notions that may be holding them back from getting help. It can also increase the  compassion and understanding of non-sufferers – resulting in better support from friends and loved ones.
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FMA UK & Fibro Action Merger

FibroAction and Fibromyalgia Association UK (FMA UK) will be working together more closely in the future. The trustees of each charity decided it would be in the best interests of both the charities and the people they serve to combine their expertise, experiences and resources. The trustees are now in talks regarding how to proceed with this process, which may take some time. 
Ella Vine, Chief Executive of FibroAction said: ‘This is a very exciting time for the charities and for all of us in the wider fibromyalgia field. This is a very positive step in the right direction. We are all delighted about it. The charities have a national scope, undertake very similar work, serve the same population, have the same group of supporters and the same aims. It will therefore be good to combine our resources to ensure that people affected by fibromyalgia in the UK receive the best  possible support and that our voice is stronger and heard by policy makers. We are thrilled about it.”
Pam Stewart, Chair of FMA UK said: “The trustees of FMA UK are delighted for FibroAction to be joining with the trustees of FMA UK to be able to move forward together with their support for people with fibromyalgia. This should allow for an even more proactive role in ensuring the best treatment options for fibromyalgia.”
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org


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Citadel Stamps  is helping FMA UK  by organising a stamp appeal.

It’s easy to get involved, just save your used  stamps and ask your family, friends, work colleagues, employer and local schools to help by saving their stamps too. 
Stamps should be clipped leaving a 5-10mm border around the stamp - this increases the value.
You can help increase the value of the stamps you send by using current high value commemoratives to post them to:
FMA UK Stamp Appeal
PO BOX 6107
Stromness
KW16 9AB
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org


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Resignation of Teresa White as RC for SE4

Please note that Teresa White has resigned as the Regional Coordinator for the SE(4) area with immediate effect.   Telephone calls and emails are being directed to the office in the meantime.
Groups in the SE4 region should contact the office in the first instance with any queries or issues.
Our thanks and appreciation goes to Teresa for all the hard work she has done in the post.
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org


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Weighing in on ‘Malaise’ 

So The Institute of Medicine has complicated and expanded the terminology wars with its recent report suggesting Systemic Exertion Intolerance Disease as a more accurate name.  I don’t like it much more than I don’t like Chronic Fatigue Syndrome, but I recognize the value of the report’s major findings and dare to believe that the publicity will have positive effects. What really gets me, though, is the Institute’s acceptance of the phrase  “Post Exertional Malaise” as the distinguishing symptom of whatever this disease will ultimately be called.


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Being Patient… and Excited: The Institute for Neuro Immune Medicine’s Patient Day 

The mitochondria and energy were highlighted in two talks at the conference.
Speaking from off-site at a surprise birthday party, Dr. Klimas noted that the Institute For Neuro Immune Medicine at Nova Southeastern has grown enormously in the three years it’s been in existence. Employing no less than 34 people, my guess is that it may be the largest single treatment-research effort focused on these types of diseases anywhere.


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Eyes on the Prize: NIH Spending On ME/CFS in 2014 

There is no denying or avoiding the importance of the IOM report and its associated controversies, but ME/CFS advocates must keep eyes on the prize: NIH funding for ME/CFS research. The 2014 spending numbers are out and NIH did not make headway on ME/CFS.


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Fibromyalgia: Understand the diagnosis process

[Fibromyalgia symptoms often mimic those of other conditions. Determining the true cause of your symptoms is key to receiving proper treatment.
Fibromyalgia symptoms include widespread body pain, fatigue, poor sleep and mood problems. But all of these symptoms are common to many other conditions. And because fibromyalgia symptoms can occur alone or along with other conditions, it can take time to tease out which symptom is caused by what problem. To make things even more confusing, fibromyalgia symptoms can come and go over time.


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Newsletter: March 6th 2015

It has been a very exciting week for The Optimum Health Clinic, with a major article in The Times on Tuesday from former Royal Harpist Claire Jones talking about her recovery.  Claire was interviewed by Alex on Secrets to Recovery LIVE last Monday, and the interview is now available to view at: https://www.youtube.com/watch?v=kPPSkvoTMyc


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My 2 Cents About Copper Worth About 1,000,000 Bucks

The other day I was eating lunch with a friend and colleague and he mentioned that copper can increase the risk of cancer. This was not the first time I had heard something scary about copper. Last year, another friend (a medical doctor) also entioned copper’s association with cancer, especially hormonal types. How could something so integral to our body be so bad I wondered?
I researched it. Just like I suspected, copper is essential to good health. We don’t need a lot of copper, but certain healthy amounts are vital and essential to our health and well-being. It’s all about balance! ??Copper is required for the formation of about 50 enzymes and it’s needed for our transporters, which shuttle hormones and neurotransmitters all over your body. Copper protects the lining of blood vessels and myelin. It supports energy production. Did you hear me? Energy!  I think one of the most important facts about copper is how it supports the healthy functioning of two major enzymes in your body, one is SOD and the other is DAO.


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A personal  note from Vicky

With so many lovely days I was unlucky to have chosen a day of rain and drizzle to meet with friends for a walk along the Seven Sisters near Eastbourne. Yes we got a bit wet but the National Trust do very good cake and I’m glad I went.  There are times when one just needs cake! I enjoy walking and cycling both great forms of low impact exercise.  As many of you know I am off later this month to cycle in Vietnam.
Also:
Education: Why should I exercise?
Video of the week: Exercise to release the SI joint
Success Story: Philip Smith


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Does this ring true for you?


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 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 07/03/15





This is a countdown!  There are 9 more weeks before Fibromyalgia Awareness Day.  What are YOU doing to raise awareness?  I have added the above combination of logos to my Facebook page.  The middle one is adapted from https://www.facebook.com/HiddenDisability  Can you do something similar?  Tell your FB Friends all about it.

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WORDz for the WEEK

212.  I sometimes give myself admirable advice, but I seem to be incapable of taking it.

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How to Live with Brain Fog; Taking Charge of Life


Adrienne Dellwo
The cognitive dysfunction of FMS and ME/CFS (aka brain fog or fibro fog) can be one of the hardest symptoms to live with. (More than anything, it's what made me leave my old job.) Get some help for living with the fog, below.
Also this week, we'll look at several things it pays to get on top of, including stress, how you eat, pacing, your sex life and more. That starts up top and continues under More From About.com. We've also got a couple of new glossary entries down at the bottom.
Take care of yourself!
Adrienne
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Get More Vitamin D


Shereen Lehman
Your body makes vitamin D when your skin is exposed to UV light from the sun. But, it's tough to get enough sun exposure in the winter in the northern latitudes so it's a good idea to up your intake of vitamin D foods or take a supplement.
So this week, I've got some information on food sources of vitamin D. Take a look, then come let me know what you think on Twitter or Facebook.
Shereen Lehman, MS -Nutrition Expert


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How to Diagnose Fibromyalgia




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A MEMORABLE APRIL WEEKEND WITH FUN, LAUGHTER & FM NEWS


If you have not booked for our 6th international Fibromyalgia Conference on April 24/27015, it is not too late. Once again the cost is as low as we can make it to enable folks to enjoy the education, research news, make new friends, as well as entertainment, fun and laughter. You will have a chance to talk to the speakers personally 1-2-1 - almost a private consultation as part of the conference weekend and you will be among folk who understand your aches and pains. It has been said, “Conference is a great educational
and social experience”. We aim to please.


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Fibro Flare Magazine February/March 2015, Issues 10 & 11




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Living Well with Fibromyalgia
March Edition - Invisible Tears


I’ve been sad. I’ve been very sad. I was sad and cynical and bitter. I know you know exactly what I’m talking about: the lock-yourself-away, pray-for-never-ending-sleep, wonder-why-you-bother-to-wake-up type sadness or, when you try to think positively and tell yourself that there are always people who are worse off, you wonder if you are THE worse off (some-one has to be, right?)
I know that most, if not all, of us suffer from these feelings; at the time it felt like no-one could ever have felt the sadness that I was feeling. So my way of reminding all of us that we are not alone is to choose a theme for this issue that resonates so completely with us: Invisible Tears.

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 How Broken Are You?











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FIF

 Fibromyalgia is a common disorder, affecting about 5% of all women.
It is characterized by widespread pain and many other symptoms
                     
                               Fibromyalgia is not a psychiatric disorder.
                               It can now be confidently diagnosed and treated.
                               For more information see this website.


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5 Tricks for Reducing Fibro Pain with Pressure Points


When pain afflicts the body it can disrupt – and in some cases completely dishevel – our lives. For those with chronic pain conditions such as fibromyalgia – the pain is often constant and widespread. It can be difficult to describe to someone who hasn’t experienced it – but some have equated it to having flu-like symptoms that simply won’t go away. Symptoms can include tender muscles, aching joints, constant fatigue or exhaustion, digestive problems, difficulty sleeping, trouble thinking clearly and much more. . . . . So where are the most effective pressure points for relieving pain? Lets take a look at 6 common relief points for people in pain:

Shoulder or Neck Pain
     #1 – Neck
     #2 – Shoulders
Lower Back Pain
     #3 – Lower Back
     #4 – Ankle Point
Headache
     #5 – Forehead


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ENFA Pan European Survey 2015

Please find below information regarding a survey being carried out by ENFA (European Network of Fibromyalgia Associations).

Please share this message with your group members, and on your facebook pages etc .  We need  to get as many people completing the survey as possible.
Collecting information for Fibromyalgia international Awareness Day 12th May 2015 ENFA has produced a survey to discover how fibromyalgia is treated throughout Europe. This will enable us to give evidence to the decision makers about any differences, expenses incurred and the widespread nature of the condition.
To do this we need as many people from as many different countries in Europe as possible. It will not be affective with only a few hundred responses, we need thousands!!!

Start Survey

Survey closes 14th April 2015
Thank you for reading this. If anyone has any questions then please email the office on head.office@fmauk.org.


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The Clock Was (Is) Ticking: Major Study Suggests ME/CFS is Hit and Run Disorder 


It’s a major study indeed – the first, I believe, to come out of the Hutchins Foundation’s Chronic Fatigue Initiative and the media is picking it up quickly. The Hutchins Foundation doesn’t mess around. They’re putting $10 million into researching chronic fatigue syndrome. They do big rigorous studies with top researchers. This study with its carefully selected patients from across the country was loaded with ME/CFS expertise. Besides Mady Hornig and Ian Lipkin of Columbia, Dr. Montoya, Dr. Peterson, Dr. Klimas, Dr. Bateman, Dr. Levine and Dr. Komaroff were listed as co-authors.


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Gaining Ground: Influential Magazine Touts Seriousness of Chronic Fatigue Syndrome 
“The fatigue that affects ME/CFS patients is as different from regular, end-of-the-day tiredness as Ebola is from the common cold.” O’Rourke 


Getting published in the New Yorker is the holy grail for many writers.  It’s legendary commitment to rigorous and well-formed journalism has made it the elite journal of American letters for over eighty years. One of the “pre-eminent forum(s) for serious fiction literature and journalism,” the New Yorker was one of the few magazines to survive the assault on print journalism virtually intact. It’s that good. Laura Hillenbrand’s  2003 essay “A Sudden Illness” – the first chronic fatigue
syndrome piece to appear in the New Yorker  that I know  of – won the National Magazine Award.


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Calming Currents: One Fibromyalgia Patient’s Recovery/Recovering Story 


(We embrace recovery/recovering stories with the acknowledgement that fibromyalgia and chronic fatigue syndrome are heterogeneous conditions and what works for one person may not (or may :) work for another.) Someone with a success story who has financial ties to the product or technique they used to improve or recover obviously throws another factor into the equation.   We’ve chosen to include those stories  for two reasons: (1) a surprising number of people who have recovered or improved greatly do end being associated with whatever helped them and (2) we want to provide information on all legitimate options.  Thanks to Linda for sharing her story. )


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Is Fibromyalgia A Mitochondrial Disorder? 


We tend to think of fibromyalgia as a central nervous system disease but that focus has tended to obscure the growing evidence of problems in the body. We don’t tend to think of fibromyalgia as an inflammatory disorder. It’s true that overt signs of inflammation are rarely found in people with FM but some studies suggest inflammatory factors may play a role.
Then there are the mitochondria. Mitochondrial dysfunction is thought of as a real possibility in chronic fatigue syndrome, but I’ve rarely associated it with fibromyalgia or pain.  It turns out, however, that multiple studies – most of them small – suggest that mitochondrial dysfunction could indeed play a significant role in fibromyalgia. Could fibromyalgia, whatever else it is – also be a mitochondrial disorder?


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Latest Story


What were the steps leading up to your diagnosis?

It started with the Epstein-Barr virus in 2005. When it wouldn’t go into remission my doctor called it chronic fatigue syndrome. Two years later I started to have severe muscle pain. When I finally saw a rheumatologist in 2007 I got the diagnosis of fibromyalgia.


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Lesser Known Fibro Symptoms


Most people who suffer from fibromyalgia are familiar with the condition’s many common symptoms. These include pain, fatigue, fibro fog, depression, anxiety, stiffness and irritable bowel syndrome. It’s likely that if you suffer from fibromyalgia, you will suffer from most – if not all – of these symptoms.
However, unfortunately, the list of symptoms doesn’t stop there. There are many other effects – mental and physical – that fibromyalgia patients experience, some more common than others.
Which of these less common fibromyalgia symptoms do you suffer from? How do you cope?


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Finding the Best Fibromyalgia Resources
Top Websites, Videos, and Books for Fibromyalgia Sufferers


Chronic pain is a very personal challenge, and every sufferer has to fight fibromyalgia in their own way. However, that doesn’t mean you’re on your own all the time, and while it’s up to you to reach out and investigate resources, there are plenty of helping hands at the ready.
The best way to stay in physical and emotional control of your illness is with a range of resources – fibro news, social support, and tips for daily management – that are both convenient and accurate.


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Email Campaign Archive

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Focal Point Round Up (February 28th 2015) N.I.


Section on ME/Fibromyalgia begins at about 22:45 and ends at about 29:00 (6:55 minutes!)

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Innovative Nutrient Helps Repair Damaged Mitochondria & Reduce Fatigue up to 45% 

Clinical trials have shown that NT Factor® can actually support the repair of damaged cell membranes - in effect reducing the cells' biological age and restoring mitochondrial ability to generate energy.
This is true whether the reduced energy/fatigue is from an illness like ME/CFS or fibromyalgia, a side effect of chemotherapy, or simply a result of aging. Studies done with severely fatigued patients in each of these populations demonstrated that NT Factor can support reduction of fatigue levels by as much as 45 percent.(1-3)
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Welcome to the March 2015 UK Fibromyalgia Research  Newsletter

Every month we collect all the relevant fibromyalgia research from around the world so that you can keep informed about your condition.
Back Issues of these email newsletters available here


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A personal  note from Vicky


The picture shows the amazing view we had from the Shard.  My son gave me two tickets as an extra birthday present back in November and we choose a good day to use them as it was clear.  The 17.30 slot enabled us to enjoy the view in daylight and watch the sunset and the lights comes on.  Well worth a visit.
I had a Reiki session with Sue Fishbourne the other day from Hollytree Healing Centre.  I have seen Sue on and off for years now and find I always feel better after seeing her for a session. I was sceptical at first about Reiki but have found it has rebalanced my energies and often helped with emotional and physical traumas for me. Sue has kindly offered a £5 discount to anyone mentioning Fitness Function when booking. In addition to this Sue does various workshops and runs a monthly meditation group.
Her website is http://www.hollytreehealingcentre.co.uk
Have a great week!
Vicky x
Also:
Education: Are you wasting time?
Video of the week: How to do a spinal twist.
Success Story: Barbara Hope


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Next week I hope to tell you how the Joint Project team has decided to mark Fibromyalgia Awareness.  Meanwhile, enjoy the spring-like weather that is with us at the moment.


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 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.