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FMS eNews 04/05/13

Hello – and welcome to the new subscribers who were at the Fibromyalgia Conference at Chichester last weekend. 
I had started this eNews before I left for Fibcon.  I have added some feedback from the conference since, which I hope will be useful whether or not you attended the event.



117.  Reality isn’t the way you wish things to be, nor the way they appear to be, but the way they actually are.


Tried and Tested Group Report on a treatment that seems to be helping…..

Karen is a founder member of Tried and Tested and has had Fibromyalgia for over 20 years. Tried and Tested was started in 2007 to develop a more targeted way of spending our FM healing pound. Probably like you our members had wasted ££££ on things that did not help or made them worse! Members of the group are based in Surrey and Sussex.


Jean Luc Lafitte KST Chiropractic

There are various forms of Chiropractic adjustment, and just as a skilled mechanic uses different tools from his tool box to fix a car, I use diversified Chiropractic adjustment techniques, because no two patients are the same, and in my opinion no two adjustments can be the same.
The two techniques I use the most are called McTimoney Corley and KST (Koren Specific Technique) the advantage of this is that with McTimoney Corley and KST technique some of the spinal corrections can be done sitting or standing.


Fibro Thunderclap

Did you join in?  If not, upload this header to your Facebook and Twitter pages NOW.  Keep it there for the month of May.

Purple Law Lady says:- - - Click to find out

I think a purpled Niagara Falls for Fibromyalgia Awareness is a must see.  Looking forward to photographs.


New research: Eat grapes to reduce body-wide inflammation and organ 
Thursday, April 25, 2013 by: Sherry Baker, Health Sciences Editor

Research just presented at the Experimental Biology conference held in Boston this week reveals that grapes contain powerful health promoting properties. Specifically, natural components known as polyphenols appear to protect against organ damage associated with the progression of metabolic syndrome - a group of conditions that occurs together and includes high blood pressure, abdominal fat and elevated cholesterol levels.


11 Tips for Living With Chronic Pain

1. Learn deep breathing or meditation to help with chronic pain.
Deep breathing and meditation are techniques that help your body relax, which eases pain. Tension and tightness seep from muscles as they receive a quiet message to relax.
View the other 10.

Is your pain interfering with the good things
in life? 11 ways to put pain in its place.
Read Article ›


PatientsLikeMe Newsletter Issue 28 - April 2013
Stress. How do you handle it? 

Many of us know that stress is harmful for both our physical and mental health, but it's a product of the culture we live in and the expectations we have for ourselves. The question is not, are you experiencing stress, but how do you handle it?


Fibromyalgia Conference, Chichester, 26th  - 29th April 2013

 The Conference was attended by 140 delegates from all over the UK as well as from other countries.  There was a packed programme of speakers and other activities, so never a dull moment.  I found the conference very tiring and have spent much of this week asleep!  Next year’s conference is being planned to last even longer. I will work through the programme and give you links and brief info about each item.


Friday 3.15 – 5pm, Benefits Forum with John Stevens & Wes Wright

John and Wes who deal with both debt and benefits and offer advice on both gave a presentation explaining the changes in the UK Benefits System, both PIP (Personal Independence Payments) and ESA (Employment and Support Allowance).  Universal Credit is replacing the multitude of previous allowances.  They are based in West Sussex but there are branches in surrounding counties.  


The Fibro Element

One thing that was made clear throughout the conference is that Fibro Is Real.  This was a common denominator.  Speakers differed in their advice for treatment but all agreed it is a personal thing and each fibro sufferer/fighter/survivor has to find their own way through the maze!  Much advice was given to help this to be accomplished.  I took copious notes of all lectures, but this is not the place to report in full.  Here, I am linking you to the various websites given in the conference programme (ans some others) which will make it easier for you to find them as you won’t have to type out each URL.  I have done it for you!  Just click on each link.


Saturday 9am, Dr Kevin White - ‘Fibromyalgia - Bridging the Gap between Myth and Reality’

Dr Kevin White
Author of the award winning book, ‘Breaking Thru the Fibro Fog’ Dr Kevin is a knowledgeable and humorous speaker and writer, as well as being an accomplished musician, songwriter, performer – and dancer! 
Much of Dr Kevin’s philosophy can be found on his website  There are many videos available on the home page of the website which contain much of what he said at the conference.
One contains the limerick he delivered at the entertainment evening.  I promised to repeat it in eNews.

“There once was a woman with fibro
Whose doctor just laughed when she said so.
‘The good news’ he said ‘is it’s all in your head’
Now all they can find is his torso.”

Such might be the reaction to doctors who refuse to acknowledge fibro.

as a paperback or Kindle edition.


10am, Dr Kim Lawson ‘Are FM & CFS, a Single Condition?’ (No photo available)

Kim has done much research into Fibromyalgia.  In his talk he compared and contrasted the two conditions.  Other works of his can be found here on the Sheffield Hallam University site.

See also:- Beard, S.M., Le T.K., Zhao, Y., Coleman, A., Ang, D., Roskell, N., and Lawson, K., (2011) Cost-effectiveness of duloxetine in the treatment of fibromyalgia. J Med Econ. 14(4), 463-476

Lawson, K. (2009) Pregabalin and fibromyalgia syndrome: a treatment option. Clin. Med: Ther., 1, 809-824.

Lawson, K., Shawcross, E. and Raphael, J.H. (2008) Function of potassium channels in blood mononuclear cells of patients with fibromyalgia. J. Pain Manage., 1(3), 289-294.


11.15am, Prof Kevin Davies - ‘Overlap of FM & SLE Sjogren’s and other ‘inflammatory’ diseases.’ (including Lupus)

Prof Kevin Davies
Another set of overlapping conditions!  Unlike fibro, diagnoses are more easily made. 


12.15pm, Claudia Marek – ‘The Guaiffensin Protocol’.

Dr. St. Amand, the originator of the protocol claims that the drug guaifenesin can treat fibromyalgia symptoms by removing excess phosphate from the body, which he believes to be the cause of fibromyalgia.  This involves taking guaifenesin, and also avoiding products that contain salicylates.  Dr. St. Amand and Claudia have co-operated in writing 3 books and she has written some on her own – about fibromyalgia. (temporarily unavailable)

This is what Wikededia says about it 


2pm , Dr Patrick Wood’s film Fibromyalgia: New Insights, New Hopes
was shown.
Dr Patrick Wood

Here are the links to it on YouTube

3.15pm, Veronica Pettifer – Neck & Shoulder Massage (No photo available)

Veronica led the group in exercises sitting at a table; self massaging arms, head, shoulders and neck with breathing exercises.

Ronnie’s website is


4.15pm, Dr Clare Morrison – ‘Oxalate – the Hidden Poison.’

Dr Clare Morrison
The advice she gives was to avoid all foods containing oxalates (which includes most fruit and vegetables) and eat plenty of white flour products/carbohydrates.  Quite contrary to much other advice but she says it worked for her.
You can read her articles here

I will deal with Sunday’s events next week.


April 26th, 2013 Newsletter

April 28th, 2013 Newsletter

April 30th, 2013 Newsletter

May 1st, 2013 Newsletter

May 2nd, 2013 Newsletter
May 3rd, 2013 Newsletter


The Mystery of Pain

Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.

Emily Dickinson


Have a great Bank Holiday weekend.
Best of wishes



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N.B.   I would like to point out to you that the information in my 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 eNews is posted, please send an email to as you will be added to the emailing list.
I previously sent out emails as FMSSAS eNews.  Past issues of FMSSAS eNews can be found at and on a blog at  These ceased at the end of November 2012 when I resigned as a trustee. This blog commenced on 8th December 2012.