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FMS eNews 30/08/14

The Sutton Fibromyalgia Pop In Club are holding a stall at Asda, Sutton on 14th September, with challenges!  Any other plans for Fibroyalgia Awareness week besides  this and Horsham's which I outlined last week?  Let me know.


WORDz for the WEEK

183.  Before giving a piece of your mind make sure you have enough to spare.


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

The suicide of Robin Williams has thrown a spotlight on not only the tragedy of suicide, but depression and chronic illness, as well. See what we need to learn, and get resources for helping you and your loved ones identify the signs of a serious problem.
That's below.
Also this week, a look at being a parent when these illnesses sap your ability to ... well, do much of anything. Plus, remember those format changes I've talked about? They're about to become a reality for this page, so I've include the guide to them again to refresh your memory. I know how confusing it can be when something no longer looks familiar!
Down in Featured Articles, I've focused on things that can make your life better, bit by bit, because it's the sum total of the steps we take that define our journey.
Take care of yourself!


The ‘Insulted Midbrain’ in Chronic Fatigue Syndrome 

Recently Dr. Lucinda Bateman proposed that neuroinflammation in the middle part of the brain could explain many, if not all, of the symptoms found in Chronic Fatigue Syndrome. With that intriguing hypothesis in mind we take a look back at a fascinating MRI study by Dr. Leighton Barnden of the Department of Nuclear Medicine, The Queen Elizabeth Hospital, Adelaide, that came to a similar conclusion two years ago.


From Mono To Giardia To Orthostatic Intolerance to … Chronic Fatigue Syndrome and Dr. Cheney: the First Visit 

My ME/CFS History
1989 – The First Flu-like Illness
I was always a high energy burn the candle at both ends type-A person. In my early twenties (1989) I came down with a flu-like illness that did not go away. I had gone from a person who would play sports 4-6 hours a day, to one who would get worn out walking around the block. The doctors said I had mono or Epstein-Barr Virus (EBV), but the condition did not resolve.

Read more:


The Cheney Chronicles #2: His Protocol For Chronic Fatigue Syndrome 

I have a confession to make -  I am treating myself.
I just finished listening/reading Dr. Horowitz’s book, “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” in which he discusses MSIDS – Multiple Systemic Infectious Disease Syndrome.  I learned from that book that we all deserve a doctor that tries to diagnose our health problems and who wants to reduce his patients suffering.  I learned some various other things from his book that could also be useful, especially if you suspect you have Lyme disease.
My current host of doctors include Dr. Rey, who is a member of Dr. Klimas’ clinic at Nova Southeastern University, and Dr. Paul Cheney. I feel they are very narrowly focused. Therefore, I am trying to treat myself making use of each of their different perspectives in the hopes that the combination of treatments will prove to be the catalyst that reduces and preferably eliminates my relentless fatigue.

Read more:


FM HealthWatch
Where Fibromyalgia and Chronic Fatigue Syndrome Part Ways (and Where They Don't) 

Fibromyalgia and ME/CFS have many similarities but they also have some distinct differences. Learn what the research teaches us about where they shake hands and where they go their separate ways.


And other articles:


What You Should Know About Fibro 

Pain, tenderness, and fatigue are just a few of its possible symptoms. Find out how your brain and nerves may play a role.
Watch Video › 

   • With Exercise, Take It Slowly
  • Tips to Find a Fibro Specialist
  • Why Gut Bacteria Matter


Do You Have Insomnia? 

How do you tell if you're simply having a few rough nights, or if you have a bigger sleep problem? Find out.
Read Article ›

  • Natural Sleep Aids
  • What to Do After a Bad Night's Sleep
  • 11 Tips to Help You Sleep Better Tonight


How many marbles do YOU have? 
An easy fun way for children to understand the physical limitations of someone with CFIDS and Fibromyalgia using marbles and a jar.

I have written a children's book to help them understand the physical limitations of someone with Chronic Fatigue Syndrome and Fibromyalgia.. I've written a fun story but give a practical fun analogy that anyone can use.   The cool thing is the analogy would work well for other chronic illnesses such as rheumatoid arthritis, pulomary disease and other physically limiting conditions.  I plan on using Xlibris which is listed as one of the top 10 self publishing companies.. I have a contract ready and waiting and all I need are the funds to proceed with the publishing.. The publishing package includes illustration, marketing, registering the book with the federal government, obtaining a Unique Identifier number.  This book is necessary and will help children and families with CFS and Fibromyalgia.  I have already had friends who have CFS and or Fibro read it to their children and many of them have already assembled the jar and marbles.  It's so much fun for the kids and the adults..



FM Joe's Election Campaign

Joe Neilson, Independent Parliamentaary candidate for Brighton Kemptown visited the newly opened Brighton TV Studios.  He met a girl working there who has had ME since she was seven.
Photo 1. 
Photo 2. 

Joe has had an article published in The Fibromyalgia Magazine.
Page from magazine. 
Article about Joe.


List of FMSSES Trustees & Group Leaders

If you are looking for a FM Support group in SE England, look here:


A personal  note from Vicky
It wasn't meant to be!

For those who haven't  seen me in the past week you'll know that I was unsuccessful in my bid to take part in the next series of 'The Island'.  Many of you thought I was crazy to even contemplate it and maybe I was.  It was though an interesting experience to go through the selection for a reality TV show.  Lots of us there, were interested in seeing how far we could push ourselves but of course the television company had  another agenda.  They want a diverse range of people, the more extreme the better judging from the people from my group that went through to the next round. I enjoyed the last series and will certainly watch the next series with extra interest.

Read more:-
Also included:
Education: How to be happy.
Video of the week: The Diamond Press
Success Story: Doreen Coughlin


GMI Daily Newsletter: 8/22/14

GMI Daily Newsletter: 8/23/14

GMI Daily Newsletter: 8/24/14

GMI Daily Newsletter: 8/25/14 

GMI Daily Newsletter: 8/26/14

GMI Daily Newsletter: 8/27/14

GMI Daily Newsletter: 8/28/14


Yesterday I returned to St Barts for a review on my eye situation.


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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