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FMS eNews 20/06/15

There are lots of research reports and new ideas for you this week.  From new technology, the vagus nerve stimulation looks extremely promising as a treatment for FM, to old fashioned remedies like raw honey that can do so much good.  A plethora of information awaits you.  Don't forget that the BROWN titles are links to the relevant websites.  This blog only gives a taster of each one
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WORDz for the WEEK

225. There may be silent lips but, there are no silent minds.
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Post-Exertional Malaise; Other Symptoms

Exercise intolerance is one of the defining features of ME/CFS. Learn more about it, including what it means, why some doctors don't believe in it, and what physiological abnormalities may be behind it. (We'll look at treating/managing it next week.)
Also this week, a look at some of our other symptoms and how to deal with them.
Take care of yourself!
Adrienne Dellwo - Fibromyalgia & Chronic Fatigue Expert
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Dopamine in Fibromyalgia & Chronic Fatigue Syndrome

Low Dopamine: How It Makes You Feel & How to Fix It
Dopamine has different roles in different areas of your brain. In the thinking areas, it makes you able to focus your attention.
Low levels of dopamine in this area are linked with ADD/ADHD. In the movement areas, it helps you control how your body moves.
Extremely low levels here lead to Parkinson's disease, which is characterized by tremors and problems with balance and coordination.
People with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) generally have low dopamine levels as well.
Symptoms of both conditions include both cognitive effects as well as movement and balance problems.
Adrienne Dellwo

See also the article by Suzy Cohen "Have You Stopped Enjoying Life? Could Be Low Dopamine" 
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17 June 2015 Newsletter

ESA 8 Month Delays And Forced Psychological Testing Plus Mass DLA To PIP Migration Goes Ahead
Claiming benefits under the Conservatives involves waiting times that are, in some cases, literally illegal, even if not actually criminal. And there’s also a question mark over the legality of the increasingly common practice of forcing ESA claimants to undergo psychological testing and Neuro Linguistic Programming (NLP) training.
But none of this stops the new minister for disabled people, Justin Tomlinson, crowing about not having to pay compensation to PIP claimants waiting over a year for vital benefits.
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Publish the statistics showing how many people have died after their benefits were stopped
Ian Duncan Smith is attempting to block the publication of "death statistics" that will reveal how many people have died within six weeks of their benefits being stopped.
After a freedom of information request, The Information Commissioner’s Office has said that there is no reason not to publish these figures but Ian Duncan Smith's department - the Department of Work and Pensions - has launched an appeal to prevent the figures being made public.
I've started this petition to call on the Courts and Tribunal Service to dismiss this appeal and so prevent any further delay by the DWP in publishing these figures. Please support me.
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Amitriptyline Pain Relief and Side Effects
. . . . . Unfortunately, of course, with all good pain relief medications, there are side effects. There are a range of different side effects associated with amitriptyline and, although most people only experience a couple and they are usually fairly minor side effects, sometimes they can be extremely severe. . . . .
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Message from Beth Urmston re NI's booklet 'Fibromyalgia is Real' 

Polite Request: The second edition of the 'Fibromyalgia is Real' booklet will be out soon. Gemma Flood, who has published the booklet has said we can have 1,000 copies to send to GP's, Rheumatologists and any other medical professional you feel would benefit from it.
In order to do this we need you to e:mail the name and address of who you would like a booklet sent to. We will obviously incur postage charges and need envelopes to mail these out so if you can help out with any donations they will be gratefully received.
Usual e-mail address - fibroflaremag1@outlook.com which is also the PayPal account reference. Thanks in advance to all for helping to raise awareness and supporting us. X Beth
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Beth gets publicity in Warrington Guardian



Well done Beth!
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The second edition of my booklet Fibromyalgia Is Real will be launched in the Seven Oaks, Carlow, NI, on 7th July at 7 p m. I would like to thank everyone who supported me in any way in getting this out there only six months after my other one. Special thanks to Ellen Paterson, Elaine Houlden and Beth Urmston for their never ending support and patience
xxxx Gemma
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Best and Worst Foods for Sleep
What to eat before bed, by Amanda Gardner
From early birds to night owls, we all can agree that when we finally lay our heads on the pillow we’d like to actually go to sleep, thank you.
Nothing is more annoying than insomnia, and the evidence is piling up that sleep is essential for good health. Although the research is a bit spotty when it comes to which foods help or harm sleep, anecdotal evidence does suggest that certain items consumed right before bedtime are more likely to be “sleep promoters” while others may be “sleep stealers,” says Russell Rosenberg, Ph.D., CEO of the National Sleep Foundation.
Here’s a list of potential good guys and bad guys when it comes to getting some shut-eye.
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Tipping Point? The Stanford Chronic Fatigue Initiative’s Big Year Is Here
"We are at the tipping point in our scientific pursuit to identify the biomarkers and central abnormalities of ME/CFS.  Several treatment interventions will stem from our work and that of other institutions. We believe that by applying the appropriate methodology and technology, we will be able to conquer and defeat ME/CFS within our lifetime. The Stanford ME/CFS Initiative A Big Year for the Stanford ME/CFS Initiative" 

The Stanford Chronic Fatigue Initiative’s spring newsletter indicates that the next year is going to be a critical one for Montoya’s ambitious, multifaceted program. Five years ago an anonymous donor put enough rocket fuel (reportedly $5 million) into it, to run a greatly expanded program. Montoya took advantage of the opportunity to examine multiple areas of the body (immune system, heart, brain) and to fill up a large biobank (200 patients).
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“Reborn” – Reversing Fibromyalgia with Vagus Nerve Stimulation 
“The results blew me away. I have never seen an effect as powerful as this.” Dr. Benjamin Natelson 

The ‘vagus nerve’ is actually a bundle of different sized nerves. Aptly called the “wanderer”, the tenth and longest cranial nerve enters the brain at the medulla (Look up) and extends down into the chest cavity and into the abdomen.  Eighty percent of the nerve is devoted to relaying information from the body to the brain. The “wanderer” affects the function of every organ and the immune system The autonomic nervous system’s Yin to the sympathetic nervous system’s Yang, the vagus nerve regulates the parasympathetic nervous system.  It affects everything from the swallowing to digestion to speaking to blood pressure.
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The Brain Game: The Search for Neuroinflammation in ME/CFS and Fibromyalgia 
An inflammatory process (neuroinflammation) almost certainly plays a major role in the development of many neurological diseases. Andrew Lloyd has pointed out that the symptoms in chronic fatigue syndrome (and fibromyalgia)  are “brain symptoms”‘; i.e. they are flu-like symptoms produced by the brain when we get ill.  That suggests, of course, that  neuroinflammatory processes are at work. The search for inflammation in ME/CFS and FM may strike gold in the brain The search for the inflammatory basis of fibromyalgia never really got off first base, but the search for the inflammatory component that many felt must be in chronic fatigue syndrome (ME/CFS), has never died. The tie-in between the infectious onset that many people experience and the flu-like symptoms that have dogged many for decades has simply been too strong to give up on the idea that the immune system plays a huge role in ME/CFS.
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Reborn II: Vagus Nerve Stimulation and Inflammation

(The first part of this blog is taken from an article called "Hacking the Nervous System" published by the Huffington Post)
Maria Vrind's superb level of fitness in the end offered her no protection against an insidious immune process taking place in her body. By her late forties, this former gymnast had to give up her athletic coaching job. By her early fifties she was in severe pain, couldn’t walk and her knees, wrists, ankles, elbows and shoulder joints felt like they were on fire. She had a severe case of rheumatoid arthritis.
It took a cocktail of powerful drugs (including methotrexate - a chemotherapy agent) to keep her functioning. One day - one moment, really - in 2011 the drugs mteriously stopped working. Unable to walk and in terrible pain she was rushed to the hospital where an IV dripped a chemotherapy agent into her veins.
The drug worked but she dreaded a life of disability and monthly chemotherapy treatments. As it turned out chemotherapy drugs were not in her future. A new treatment from an entirely different source offered her relief beyond her wildest dreams. . . . . .
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Can’t Sleep All the Way Through the Night? Try a Little Bit of This “Ideal Liver Fuel” Before Bed
Did you know that raw honey contains “an ideal ratio of fructose to glucose” – which supports the liver, an organ that works overtime on its job of breaking down fats and toxins? Much of this “work” is accomplished during the sleep cycle which explains why sleep is so important to feeling refreshed. It literally allows the body to detox.
A spoonful of raw honey has a “dual action” for sleep:
1) restoring glycogen to the liver so that your brain doesn’t activate a stress response, which often occurs when glycogen is low (this could potentially pull you out of sleep.
2) Honey also assists with the release of melatonin – a hormone produced by the body that naturally helps with sleep.
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10 Signs You May Have A Thyroid Problem (And 10 Things You Can Do About It)
The thyroid gland is a part of the endocrine system which produces and regulates hormones in the body. This small, butterfly-shaped organ can be found in the front part of the neck, only palpable when a person swallows (as the thyroid moves up and down). The thyroid produces several hormones, namely: thyroid stimulating hormones (TSH), thyroxine (T4) and triiodothyronine (T3). The hormones produced by the thyroid regulate growth, metabolism, and body temperature – which is why thyroid problems (either an underproduction or overproduction of hormones) usually affect weight, activity, and physical development. [1]
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Top 20 Natural Painkillers In Your Kitchen
Just discovered a fantastic, fascinating list of natural painkillers that are common kitchen ingredients! What’s interesting is that the list is not just a basic list – but also gives specific information as to the type of pain that researchers have found that these natural ingredients may assist with – and the way in which the food is used (not all of the remedies involve actually eating the herb / food in question!)
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26 Struggles Of Exhausted Insomniacs
Insomnia affects 48 percent of Americans occasionally and 22 percent of Americans every or almost every night, according to the National Sleep Foundation. The causes can vary from depression and anxiety disorders to the simple buildup of stress from everyday life. But what seems to remain constant is the frustration you feel when you just can't seem to drift off to dreamland and stay there for hours on end.
We reached out to HuffPost Lifestyle's Facebook community to find out what thoughts most commonly course through your mind during a typical bout of insomnia, as well as personalized ways you've tried to cope with this sleep-depriving disorder. Here are 26 thoughts and suggestions they had to share. . . . . .
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Fibromyalgia: Does exercise help or hurt?

You may be reluctant to exercise for fear that it'll aggravate your symptoms, but research shows that regular moderate exercise lessens pain and improves function.
Although pain and fatigue may make exercise and daily activities difficult, it is crucial to be physically active. Research has repeatedly shown that regular aerobic exercise improves pain, function and overall quality of life.
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Have You Stopped Enjoying Life? Could Be Low Dopamine
Some people feel so bad they want to die, but don’t follow through because they actually lack motivation. There is no pleasure. That must sound doesn’t it, but it holds true for many.
Why bother with anything, nothing brings you pleasure… this kind of depression is related to dopamine imbalances.
Does it sound like you?
You’ve been trained to equate depression with serotonin deficiency, not dopamine, but in fact people with serotonin-related depression don’t usually wish to die. They feel blue, they have no motivation, sometimes poor self esteem, but they don’t want to really die. They are commonly put on drugs such as Prozac, a very good one if you’re aiming to raise serotonin temporarily.
But Prozac might backfire, I’ll tell you why in a minute. It has to do with fluoride and iodine. My point right now is depression is NOT a Prozac deficiency (or Celexa, or Cymbalta, or Lexapro, or any of them).  They may be helpful, and you may rely on them but the point here is depression results from something other than a medication deficiency. There’s an important distinction I want to make, one that could potentially save your life, or someone you love.

For more information on dopomine see "Dopamine in Fibromyalgia & Chronic Fatigue Syndrome" by Adrienne Dellwo in AboutHealth.com

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We are extremely proud and excited to be announcing a 3 year collaboration with University of Surrey to complete a Randomised Controlled Trial (the gold standard of research) investigating the OHC approach treating ME/CFS.  To find out more about the study, and the related fundraising campaign, click play on the below video with OHC Founder Alex Howard:


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I hope you have found this eNews edition helpful.  I was delighted today to receive a medal, a FIBROMYALGIA HONOUR awarded for Helping Others.  Thank you Fibromyalgia South East Support.  I am indeed honoured.
Best wishes to all
Stella
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Contact: fmsstella@gmail.com
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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 PURPLE like the dividers.  This blog gives just a taster of each article which can be viewed in full through its link.  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 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 fmsstella@gmail.com and you will be added to the emailing list.
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