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FMS eNews 02/08/14

How are those of you with school-age children coping with the onset of school holidays?  I hope some of you will manage a getaway and be able to enjoy it.  Staying at home can be enjoyable too.  Give and take with your children;  get them to help you and treat them in return.  They can be an asset and not a burden. Have fun!


WORDz for the WEEK

179. The strange thing about life is that it is never so bad that it can't get worse.


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

We all know that stress makes us worse, but new research sheds light on what's actually going on in the body of someone with ME/CFS - and it could be a key to understanding, and lessening, post-exertional malaise. That's below.
Also this week, a bit about tricyclic antidepressants, and a look at some other drug classes - with a special focus on the problems they can cause. That focus will continue down in Featured Articles.
Take care of yourself!


Getting Older: A Chronic Fatigue Syndrome Patient Faces a Difficult Decision 
It’s the Bones, Stupid

The endocrinologist and gynecologist both gasped at the results of my latest bone density scan. “If you don’t do something, you’ll wind up in a nursing home soon,” warned  the endocrinologist.
They insist that I take either Prolia or Reclast, heavy duty medications known to either slow down bone loss or rebuild bones.  
But possible side effects described by the flashy brochures with the pictures of radiant aging actresses, are distressing (flu-like symptoms, weakness – thank you, I already have those) and even hair-raising (osteonecrosis of the jaw), especially for someone who already feels as if she’s suffering from the side effects of something or other. And because these medicines are administered either intravenously or intamuscularly only once or twice a year, who knows how long any side effects might last?


Diet, Drugs, Herbs and SIBO: One ME/CFS/FM Finds Relief with the Pimental Approach 
Small Intestinal Bacterial Overgrowth (SIBO)

Small Intestine Bacterial Overgrowth or SIBO is a chronic condition or infection of bacterial overgrowth in the small intestine. Normally the small intestine has low numbers of bacteria and the large intestine has high numbers of bacteria; however, in SIBO bacteria exist in large numbers in the small intestine which interferes with proper digestion and can lead to nutritional deficiencies.


Measuring Blood Volume in Chronic Fatigue Syndrome – the Daxor Way 
 “For the first time, physicians have access to technology which enables them to obtain blood volume measurement rapidly and with a high degree of precision.” – Daxor Corporation

Blood volume is often low in ME/CFS, but it was not until recently that an accurate and easy method of measuring it was possible.
Some people with Chronic Fatigue Syndrome (ME/CFS)  have been doing a bit more travel lately. It used to be that blood volume measurements were done at local hospitals, but with the advent of a more precise method some patients are traveling, sometimes hundreds of miles, to get to a medical center/research hospital that will do the test right. What do all these medical centers have in common? They have a Daxor BV-A 100  blood volume measurement machine. Blood volume measurement has never been done a lot even in ME/CFS, where blood volume is often quite low, and there’s a reason for that.  Past techniques required spending 4 to 8 hours at a hospital, and on top of that weren’t very precise.  Instead of actually measuring blood volume, they measured the  ratio of red blood cells to plasma (higher ratio indicates higher thickness of the blood).  If you were missing equal amounts plasma and red blood cells, though, as many POTS and ME/CFS patients are, the test can indicate your blood volume is normal when it’s not.


Prevalence of falls in fibromyalgia patients

Our results suggest that patients with FM have greater frequency of falls than RA patients and normal controls. In the study sample, no relationship could be demonstrated between falls and BMI, depression or pain. Patients with more frequent falls in 12 months have worse quality of life. Even though this is retrospective study with all the recall bias involved in the project, we highlight the higher prevalence of falls in FM patients and it is suggested that further studies ought to be made in order to understand the pathophysiology of falls in this population.


The fibromyalgia stigma: When law enforcement, not pain management, wins

A patient who mentions the “F” word, or fibromyalgia syndrome (FMS), to most primary care physicians, hospital residents, specialists and even pain management clinics, is liable to be labeled as a ‘drug seeker’and not a serious patient.
The truth is, those who are diagnosed as having FMS are seeking drugs, but not for recreational use. They want medication to relieve the agony that FMS brings to their health table.



Women with Fibromyalgia Have a Real Pathology Among Nerve Endings to Blood Vessels in the Skin.
A rational biological source of pain in the skin of patients with fibromyalgia

What the team uncovered was an enormous increase in sensory nerve fibers at specific sites within the blood vessels of the skin in the palms of the hands. These critical sites are tiny muscular valves, called arteriole- venule (AV) shunts, which form a direct connection between arterioles and venules. The discovered pathology involving the nerve endings to the shunts provides a logical explanation not only for extreme tenderness in the hands, but also for the widespread deep pain and fatigue symptomatic of fibromyalgia.


The Chrysalis Effect News

Dear Chrysalis Effect Community
Did you hear me having a hissy fit?
This week we had some very frustrating things happen with the system that runs the emails, webinar bookings and payment pages in the business. I won't bore you with it all but I had a moment, you know one of those moments, of sheer frustration and got quite angry.
'Why does this system not do what I want it to do at the speed I need it to do it and why does it always cost money to sort out the problems!
[I ranted quite a bit actually, but I will spare you]
Then I had a call from a recoverer who has just started the programme and could really feel how sad she was at where her life is right now. She was frustrated that her body would no longer do what she wanted it to do and how long everything takes and worrying about what recovery will cost.

Read rest of newsletter:


 A personal  note from Vicky

 One goes though phases in ones life and I feel we have ended a chapter.  My daughter moved (with a lot of help from Mummy and Daddy) into her own property - a two bedroomed flat in Battersea and the picture is a view from her road.  She can walk to work a real bonus in these days of high train fares.  We are so very proud of her.


  • COMPETITION TIME!!! The competition winner is going to be announced next week. 
  • Education: Holiday tips for back pain suffers.
  • Video of the week: Pilates Exercise Video of The week: Dead Bugs
  • Success Story: Cathy Martin


It's not too late to book into this month's Girls Nights In
The Black Horse,  Mountain Range Restaurant & Bar in Findon near Worthing
Wednesday 6th August, 7pm-10pm 

Book in on line here 

Read more:


What do patients and carers WANT from health apps?

The survey is being conducted by PatientView in collaboration with Health 2.0, with the input of relevant healthcare stakeholders (policy-makers, suppliers of apps and mobile services, and healthcare professionals).
The results of the survey will be made public on November 10th-11th 2014 at the Health 2.0 conference in London, which attracts about 500 delegates. The 2014 conference is focusing on engaging the entrepreneurs who are behind the development of health apps.
So, the results of this survey should go some way to providing valuable information to app developers about how to improve their apps to meet your needs.

To participate go here:


The unexpected knock at the door is the DWP rule, not the exception

An unexpected knock at the door. Someone standing there with an ID card claiming they have come to check if you are getting the correct benefits and could they please come in?
What do you do?
You don’t have to be guilty of anything to find the possibility of such a visit very alarming – especially if you have a mental health condition made worse by stress and anxiety.

Read more:-

For previous newsletters go to


The Disability Benefits Consortium (DBC) is a national coalition of over 50 different charities and other organisations committed to working towards a fair benefits system.
This survey is about the new Personal Independence Payment (PIP). 
We want to find out more about disabled people’s experiences of applying for and getting this benefit. 
The survey has seven parts and should take about 20 minutes to complete. In order for us to understand your experience of the whole process of applying for PIP, this survey is best completed once you have gone through your application for PIP and know the outcome.
Your views are incredibly important and will help us to tell the government about any problems or issues with the process that need to change.


Register for this Free International Event!  The Detox Summit

GMI Daily Newsletter: 7/31/14


I've been counting blessings again.  

Things that keep me happy.

  1. Sudoku puzzles
  2. Crossword puzzles
  3. Talking Books (Playaway, available at public libraries; and if you have a sight problem, they're free.)
  4. Magnesium, the great relaxer!
  5. My bed that welcomes me each night, and sometimes during the day!!
What keeps you happy?
Fondest wishes



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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