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FMS eNews 26/07/14

Many Happy Returns to Prince George!  Is it really a year since he was born?  Like Victor Meldrew I say "I don't believe it!"  Yet I know it's true. Also this week the commencement of the Commonwealth Games has been front line news, not to mention air disasters.  Good news, bad news, what's new??!!


WORDz for the WEEK

178.  Life is like playing cards.  If you don't have a partner, you better have a good hand.


 From  Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome

 Video games are bad, right? They make our kids obese and violent, don't they? Whether or not that's true, video games appear to be good for something: helping our brains recover from the dysfunctions of illness. See what we know, below, plus look at the pros and cons of motion-controlled video games for us.
Down in Featured Articles, you'll find a lot of information on our brains, including pain, sleep and medication-related articles.
Take care of yourself!


Seeds of Hope For Chronic Fatigue Syndrome and FM Plus OFFERS Big Move : Dr. Bateman Talks

In the last blog (see FMS eNews 19/07/14) we focused on Dr. Lucinda Bateman’s belief that Chronic Fatigue Syndrome is finally beginning to reveal its secrets.  She feels like the big picture–i.e., the cause of  this disease–is finally emerging in  a disease that has defied understanding for so many years.  ME/CFS has not been solved, by any means, but after years of work in the field, she’s excited by what she sees.
•A Mystery No Longer? The Big Picture Emerging In Chronic Fatigue Syndrome – Dr. Bateman Talks
In this talk, which took place a couple of months later, Dr. Bateman relays the same optimism, but focuses on immense and unfulfilled needs of the ME/CFS and FM populations, proposes why it’s happened, and at the end asserts that OFFER–a new and bigger OFFER–is going to be part of the solution.
Are ME/CFS and FM Real and Important?


A Muscle Brain Connection in Chronic Fatigue Syndrome Revealed 

People with Chronic Fatigue Syndrome have weakened muscles and, let’s face it, weakened brains as well. They can’t exercise worth a darn and their ability to focus, to process information quickly and to retain it, is shall we say, blunted. One would think those two problems are not  related, but a recent Belgium study suggests they are intimately related.
We recently saw Dr. Bateman incorporate a bunch of different findings into a ‘big  picture’ view of ME/CFS. This studies findings suggest that was a good thing to do.


Are You Getting Enough Sleep? 

Fibromyalgia can make it hard to get a good night's sleep. Get the facts about sleep problems, and learn habits that can help.
View Slideshow >

  • Vitamin D for Fibro Pain
  • 16 Remedies for Restless Legs Syndrome 
  • Supplements for Pain Relief  

 and more



Many people take supplements to help relieve pain and other symptoms. But talk with your doctor first -- some can cause side effects or interfere with other meds. Track any supplements you take and note which help your symptoms.
Do Your Homework
Supplements may help some people ease pain or other symptoms. However, they are not regulated by the FDA in the same way drugs are; manufacturers are not required to show their products are safe or effective. So it's important to learn all you can about a supplement before you decide to take it. Also, be sure you talk with your doctor before starting a new supplement -- some supplements can cause side effects and interact with medications.

Read more:


Are Skin Products With Wheat Based Ingredients Safe to Use?
Cosmetics Containing Gluten Are Often Touted as Safe

The consensus floating around the United States and Canada is that “the wheat protein is too large to enter your body through your skin.”  While there is some truth to this, blindly following this advice could lead to an unfortunate set of problems for humans, even if you’re not allergic to gluten at all.
Kayoko Matsunaga, M.D., Ph.D. is a professor and chair of the Department of Dermatology at the Fujita Health University School Of Medicine in Japan.  She is also the Chair of the Japanese Society Of Allergology’s Special Committee for the Safety of Protein Hydrolysates in Cosmetics and Personal Care Products.
She’s a big deal….


What Do Tree Bark and Pain Relief Have In Common?

Nature has plenty to offer those suffering from debilitating chronic pain.  Whether from the leaf of a tree or the root of a plant, nature’s remedies are often more effective than man made medicines and can provide relief without the long list of side effects that prescription medicines often carry.  Among natural painkillers, White Willow Bark has been shown to be very effective at provided lasting relief.


Dr Chris Jenner – London Fibromyalgia (FMS) Clinic Patients

Our London Specialist Fibromyalgia Clinic is led by Dr Chris Jenner, a Medical Doctor who’s been treating Chronic Pain and Fibromyalgia (FMS) and the chronic pain, stiffness and sleep problems of ME and CFS for many years.
We are using an integrated/holistic and multidisciplinary approach based upon the latest research and treatment approaches of many eminent British and American physicians. Our approach to Fibromyalgia (FMS) and Chronic Pain involves a thorough review of the patients’ symptoms and laboratory tests to rule out any other conditions that could be causing pain, stiffness or sleep problems as well as indicating types of treatment.  We know that these conditions are real and that our patients suffer from a genuine illness.


ActiPatch® Advanced Long-Lasting Pain Relief  
5x better pain relief than OTC drugs and 100% safer.

[patches] ActiPatch® is an award winning drug-free micro medical device that uses Electromagnetic Pulse Therapy to reduce pain and inflammation. This therapy is clinically proven effective and safe and has been used for decades by physicians and physiotherapists. Advances in microelectronics have made it possible to deliver clinically proven and superior extended duration therapy in a small, convenient and economical ActiPatch® device for personal use.

Get a free sample today


Joe Nielson, disabled, fibromite, independent parliamentary candidate for Brighton Kemptown

The first Sussex disabled candidate to stand as an MP under the Access to Elected Office for Disabled People Fund, Joe Neilson, an Independent who is disabled with Fibromyalgia is standing for Brighton Kemptown Constituency.
Joe has received a grant under the Access to Elected Office for Disabled People Fund. This little known new fund can give a grant up to £40,000.00 to help disabled people to stand for public office.
The rules laid down by the Access to Elected Office for Disabled People Fund is that a person receiving the grant has to stand as an Independent candidate.

Joe promises to be an advocate for CFS/ME/FM sufferers and will supply more information as his campaign progresses.


Top 10 Tips For Sleeping in the Heat

The brain needs to be a fraction of a degree cooler than the rest of the body to achieve optimal sleep. If you're too hot this can stop you getting to sleep and staying asleep.
Here are a few weird and wonderful tips to help you create this ideal temperature differential:

See them here:


Introducing Your Team!

We believe that tracking is the future of medicine, but if it's not fun, no one's gonna do it. This is why we're excited to announce HealClick's new team concept: Team up with other patients to track your health and get better together. You pick who you want on your team for mutual support and encouragement throughout the treatment process. Add users who are medically similar or just plain awesome people. Your team will give feedback and support on your tracking updates, turning tracking into a fun and social activity. Soon we'll even have team competitions.


Free Eye Test

I urge you to take advantage of this offer and get your eyes tested, even if you think your sight is OK.  There are so many things that can go wrong with your eyes without you being conscious of them as I found to my cost last year.  For those who don't know, my SpecSavers optician found a "mass" in my left eye which was diagnosed by an ophthalmologist to be ocular melanoma (eye cancer).  I had to have a life saving operation, removing the eye to prevent the cancer from invading other parts of my body.  So get your eyes checked NOW. Download the voucher.


At Least, it isn’t Cancer.

The following post appeared at; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.


Using Google to self diagnose

We have received the following media request, please contact Jennie direct and not the FMA UK office
I'm working on a story about using Google to diagnose health problems and would like to speak to people who used Google to correctly diagnose their own serious health condition.
Please email
Kind regards,
Jennie Agg
Assistant Good Health Editor, Daily Mail


The Disability Benefits Consortium (DBC) survey

In the light of the Work and Benefit Select Committee’s publication of their views on benefit assessments, it is even more vital that we provide data to support changes.  The response generally to the surveys have been poor so far.  This is not something we as an organisation can do, we need as many people as possible to tell them what their experience has been like.  Without this we cannot expect change.
The Disability Benefits Consortium (DBC) have produced a survey on the PIP assessments. This survey has had minimal responses from people with MSK conditions. Please could you share this survey widely with your members. The DBC are also producing a wider survey, ‘The Big Benefits Survey’, to understand more on disabled people’s experience of the benefits system. This survey does not cover PIP assessments. Please disseminate the survey and encourage your members to  complete it.  Closes midnight on 3rd August.
Thank you for reading this. If anyone has any questions then please email the office on


6th National Fibromyalgia Conference

 Friday April 24th to Monday 27th 2015 - Chichester Park HHotel
Letter to delegates

Posters - please hand out and display


A personal  note from Vicky

 Well the picture of the kitchen got quite a response last week, all favourable - thank you! So I thought I’d show you the other end this week.  Still a bit of making good to do and if you wonder what the hole is, it’s awaiting the chopping board.
I’m not sure about coping with all the suggestions of ‘everyone round to my place then’ for a summer function.  I may have a lovely kitchen but I’m rubbish at entertaining hence the reason my husband is putting himself through a four weeks chefs course at the moment.

  • Education: Banana for Breakfast anyone???
  • Video of the week: Pilates Exercise Video of The week: Side Lying Scissors 
  • Success Story: Yvonne Haggis


GMI Daily Newsletter: 7/19/14

GMI Daily Newsletter: 7/20/14

GMI Daily Newsletter: 7/21/14

GMI Daily Newsletter: 7/23/14

GMI Daily Newsletter: 7/24/14


GiST last week set me thinking of the things I should be grateful for.

 Did you try it?  My 5 favourites are:-

  1.  My husband, specially today because it is our wedding anniversary.
  2.  Pets, especially Missy who gives us great joy.
  3.  Home, with my 3 generation family
  4.  Knitting needles, for creative knitting
  5.  My laptop so I can communicate with my wonderful fibro friends.

My fondest wishes to you all



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 and you will be added to the emailing list.

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