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FMS eNews 07/05/2016

May 12th is next week - in fact next Thursday.  Many events will be taking place to mark the occasion, to raise awareness and funds for research for fibromyalgia.  Some of the items here this week refer to this.  So look out for what's relevant!  I have been mentioning it over the last few weeks and I hope you have been taking note.  Last year I dedicated a whole page to Fibromyalgia Awareness Day.  You might like to take a nostalgic look here

There are several groups/organisations raising money for research.  I wish they would co-operate/amalgamate because one central fund would be more effective than several small ones.  But every little helps.  I would urge you to support at least one of them.  I have selected just four in each of the UK and the USA for your consideration.  Doubtless there are others in other countries too.
In the UK
Fibro Flare Magazine
Fibromyalgia Action UK
Folly Pogs
The Fibroduck Foundation
In the USA
Advocates for Fibromyalgia Funding, Treatment, Education and Research
American Fibromyalgia Syndrome Association
National Fibromyalgia & Chronic Pain Association
National Fibromyalgia Research Association
Would they be better together???

WORDz for the WEEK

271.  Trying to understand someone else isn't as hard as trying to understand yourself.


Notice has changed its name to so now appears nearer the end rather than at the beginning.
So you will still find Adrienne but under Verywell as I try to maintain alphabetical order of websites.


Awareness Day 2016

May is Fibromyalgia Awareness month, and May 12th is Fibromyalgia Awareness Day. This is the time of the year that people, all around the globe, raise awareness for fibromyalgia and chronic pain through fundraising events, personal stories, online campaigns, and other ways. We share our success stories, and celebrate our accomplishments over fibromyalgia and chronic pain. We honor those we have lost, but also celebrate their accomplishments as well. We stand together to raise awareness of this invisible illness, and gather resources to find a cure.
Each year here at Being Fibro Mom, various fibromyalgia organizations, chronic illness bloggers, and national online companies come together to promote awareness through personal stories, informative articles, campaigns, product awareness, and giveaways. 
See what's going on . . .  


Flare Magazine
The name has changed to FLARE and incorporates ME/CFS
Only days until International Awareness Day.  Check out pages 17, 20, 23 and don't miss our new recipes.
Your feedback and suggestions for future editions are always welcomed. Email Beth at
PDF Version

List of Towns/Cities in the UK involved in the 'Light up the Night' events on May 12th.

Norwich - Council Building
South Ayrshire - Ayr Clock
Manchester - Town Hall
Blackpool - Tower
Warrington - Town Hall
Wakefield - Town Hall
Guildford - as many buildings as they can manage
Lancaster - Ashton Memorial, Williamson Park
Newcastle - Civic Centre
Lisburn & Castlereagh - Lagan Valley Island
Glasgow - SSE Hydro 
So if one is near you, go see it!


Invitation To Fibromyalgia Action UK event in the Parliament Marking the International Fibromyalgia Awareness Day

The event will be hosted by Andrea Jenkyns MP on 11th May, 3 pm – 5 pm at Portcullis House, Boothroyd Room.
Come along to this event to mark with us the International Fibromyalgia Awareness Day and to hear from interesting speakers and experts in the field.
Jeremy Hunt will be in attendance.
Please note that to be able to attend this event you must be on the guest list. 
Please email Ella Vine by Monday 9th May to reserve a place and include your full name and surname.  So respond quickly!
You are advised to arrive minimum 30 minutes before the event to clear the security. 
For full details see:


Is Your Brain on Fire? the Younger Video Series

In this four-part series of posts we're going to cover Jarred Younger's video series and his thoughts on neuroinflammation, fibromyalgia, ME/CFS and the treatments he believes will work...
I love how Younger plants himself right in front of the camera and talks right at it.
First, he explains how increased temperature is a spot on sign of immune activation; if your temperature is up - whether in your body or brain - your immune system is on fire.
Unfortunately you can't stick a thermometer into your brain - here Younger waves a thermometer at his head - you have to use a big machine - an MRI.
This has been done before, but in contrast to past studies which have measured the temperature of one part of the brain, Younger wants to produce a temperature map of the whole shebang. If he can do that then he can pinpoint the areas of the brain, such as the hypothalamus, that might be inflamed in ME/CFS - something other techniques are not apparently good at doing.
Find out more about this study . . .

Migraine, ME/CFS and Fibromyalgia – Low Oxygen, High Lactate Disorders?

Migraine effects 12% of the population (!) or about 40 million people.  Two studies suggest as many as 75% of people with chronic fatigue syndrome experience migraines and that most migraines in ME/CFS are undiagnosed.  A  recent large fibromyalgia study suggested that 55% of FM patients may meet the criteria for migraines.  WebMD, which has very little to say otherwise about chronic fatigue syndrome, states ME/CFS is one of five disorders with high migraine rates.
If those studies are accurate, ME/CFS and FM may have more in common with migraine than with each other. That’s an astonishing possibility given that migraines were hardly talked about with respect to either disease five or ten years ago.
Learn more from this study . . .


Every year we fibromites make an effort to commemorate Fibromyalgia on May 12, ‘Florence’ Day ‘ also known as ‘International Chronic Fatigue Syndrome and Fibromyalgia Awareness Day’. 
We remember our patron, a pioneer, Florence Nightingale.  But this year there is excitement with a new bid to change the Fibromyalgia name to NIGHTINGALE’S DISEASE. 
I recently learned about the ravages of Nightingale’s Disease that have been highlighted by Dr. Kevin White MD, PhD, an FM researcher, an American who has visited to UK conferences and written a ‘Fibromyalgia book called Breaking Thru the Fibro Fog - Scientific Proof Fibromyalgia is Real’.
Read the rest of Jeanne's article . . .

See other videos by Dr Kevin White available on this page

National ME Awareness Week Conference
Saturday 14 May 2016, 2 pm
Sheldrake Suite, The Martlets Hall Burgess Hill, RH15 9NN
Presentations by
Doctor Amolak Bansal, Clinical Lead of the Surrey CFS/ME
Doctor Charles Shepherd, Medical Adviser to the ME Association
Tickets cost £3, please send a stamped addressed envelope with your cheque to  reMEmber, PO Box 1647, Hassocks, West Sussex, BN6 9GQ
 For more information about the important and ground breaking work of reMEmber contact     Janice Kent telephone 01273 831733 or email



26 People With Fibromyalgia Give Advice to Those Newly Diagnosed

Fibromyalgia may affect an estimated 10 million people in the United States, but because of its complicated and varying symptoms, many doctors don’t even understand what it’s like. Can you imagine getting a diagnosis for something your own physician can’t even explain to you?
In addition to fatigue, pain and problems with cognitive functioning, the uncertainty for those just learning they have the chronic condition can be both isolating and frustrating. Thankfully, there are plenty of people out there willing to help, and the online communities for the chronic condition are incredible resources for support.
The Mighty teamed up with the National Fibromyalgia Association and Fibro Today‘s Fibromyalgia Awareness page to ask their Facebook communities to share advice to those newly diagnosed with the chronic condition.
See what they said . . .


It is the dream of our patient community to erase the stigma and finally be taken seriously by friends, family, researchers, government and people in our local communities. May 12th Awareness Day is a chance for the millions of patients worldwide suffering from Myalgic Encephalomyelitis(ME), Chronic Fatigue Syndrome (CFS), Multiple Chemical Sensitivity (MCS) and Fibromyalgia (FM) to be seen and heard! These illnesses are real; the people are real; and they need help NOW!
If you haven't yet joined the May 12th Thunderclap, do it NOW!


Fibromyalgia Awareness Campaign on Facebook and Twitter

Add a ribbon supporting fibro to your Facebook pic. Follow all the instructions and it will be done for you. 
You can choose for how long you wish it to stay as an alternative to your usual pic and it will revert automatically.
Share with your friends and spread the word.
Fibromyalgia is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities. 
For more info . . .


Bizarre Symptoms -- You're Not Alone - By Adrienne Dellwo

One thing you have to get used to with fibromyalgia and ME/CFS is that some of our symptoms are just weird. You might think that you're the only one who gets some of them or that they're not related to your illness. A few prime examples are below.
Also, I want to welcome you to, which is the new name of Health. This change represents the company's commitment to accurate, comprehensive medical content that can help you live better with your illnesses. I encourage you to take a look around our new home.
Take care of yourself!

Adrienne's articles
Extreme Itch in Fibromyalgia & Chronic Fatigue Syndrome

Muscle Spasms in Fibromyalgia

Foot Pain in Fibromyalgia & Chronic Fatigue Syndrome

Temperature Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome


This section is included because it provides general health education, but not necessarily fibro related.

Many thanks to those of you who sent me 'get well' wishes.  I am pleased to say that I am feeling much better.  Most of my cold's symptoms have gone except that I am feeling a bit 'washed out'!  I have spent some time in the garden enjoying the glorious sunshine this week, hopefully absorbing some vitamin D.  My daughter and her husband are on holiday in Menorca.  I doubt the weather is better there!

Well wishes

or leave your comments below under 'Post a Comment'


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.  The sites included are in alphabetical order.  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 any way 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 and you will be added to the emailing list.

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