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FMS eNews 24/01/15

The laptop is restored to its former glory and functioning well except that I have lost most of my email archives.  That is inconvenient but not the end of the world.  It's back to business again with loads of information for you.


WORDz for the WEEK

206.  You will never be what you want to be if you don't decide what it is that you want to be.


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

Do naps make you feel better or worse? For me, it can go either way. Now, research looking at the timing of naps in chronic fatigue syndrome say you might be better off without them. That's below.
Also this week, we'll look at some of our sleep problems (that's down in Featured Articles) and some of our strange symptoms are over on the right.
Take care of yourself!


To exercise or not to exercise?! The great debate.

US Neuroscientist Says Exercise is a Noxious Stimulus That Worsens Symptoms of ME/CFS

A highly regarded American neuroscientist who has researched CFS for more than a decade, has decried media reports based on The Lancet Psychiatry’s recent scientific article that claims graded exercise therapy (GET) is an effective treatment for Chronic Fatigue Syndrome (CFS).
The Lancet Psychiatry report, published earlier this week, is the sixth based on the now dated PACE Trials that have been widely discredited by the international ME/CFS community.
Prof. J. Mark VanNess from the Californian University of the Pacific, referred specifically to The Lancet Psychiatry report’s claim that CFS patients have “fear avoidance beliefs” when it comes to exercise, and that this plays a role in “perpetuating fatigue and disability” in CFS.


ME/CFS Research UK Slams Lancet Psychiatry Report Advocating Exercise for Chronic Fatigue Syndrome Sufferers

ME Research UK has slammed an analytical report published in the latest The Lancet Psychiatry that claims ME/CFS patients have “fear avoidance beliefs” that exercise will exacerbate their symptoms. This, the report maintains, is a major negative factor that perpetuates both fatigue and disability in Chronic Fatigue Syndrome (CFS) sufferers.
In other words, the report is claiming that because ME/CFS patients are generally afraid to exercise, they are reducing their chances of recovery.
But the truth is:

Plus - links to a multitude of other reports.

See also on Facebook

Giving Science a Bad Name: unethical psychiatric research into ME
‘It is the duty of physicians who participate in medical research to protect the life, health, dignity, integrity, right to self-determination(…) of research subjects'[1]

In the flurry of activities sparked by another media onslaught on the chronically ill on 14th January (to be followed by a similarly, probably more loosely, orchestrated attack in Sweden on 15th January), I got caught up in collaborating with dozens of others who had written, and keep writing, brilliant, witty, intelligent, emotional, heartrending responses to journalists and science editors. 14th January 2015 was an exhausting day and on a more serious note, it was an unnecessarily painful day, too. While I was comforted by the responses from other sufferers in the UK, Sweden and elsewhere, I couldn’t help asking myself what sort of world we would live in if a serious and debilitating disease such as myalgic encephalomyelitis (ME)[2] were taken seriously and if, as a consequence, we had access to treatment worthy of the name treatment. Sadly, we are not there yet but there is no doubt in my mind that ME will eventually be given the same status as similar diseases including multiple sclerosis[3].


Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial

Cognitive behaviour therapy (CBT) added to specialist medical care (SMC), or graded exercise therapy (GET) added to SMC, are more effective in reducing fatigue and improving physical function than both adaptive pacing therapy (APT) plus SMC and SMC alone for chronic fatigue syndrome. We investigate putative treatment mechanisms.


Chronic Body Pain Articles

Michael James Hastings
A selection of articles about Fibromyalgia - celebrities, risk factors, triggers, diet advice and much more . . . .

Some featured actors who have FM are Michael James Hastings, Debbie Allen and Susan Flannery.


Wishing you all a Happy and Pain Free (as possible) 2015.
What can I say? 1400 members in just 4 months! Each and every one of you is welcome and we would dearly love to hear more from you once you feel comfortable with the way we work.
We ended 2014 on a great high, plenty of achievements. It is absolutely necessary to keep the momentum going this year.
TOGETHER – that is the only way we will be heard. If we want change we are the ones who have to make it happen. (See Julie and Jamie’s story, Pg.6 for what can happen when people pull together).
Please bear that in mind and get involved as much as you are able to each month and especially with helping to raise awareness.
I would also like to add my thanks to all the team behind the scenes, who work tirelessly as well
to help write up articles and put these magazines together. They love to receive your feedback
and questions so please keep them coming.
With much love and gentle hugs to you all.

See Fibro Flare's Facebook Page

You can print this and use it as a car sticker.

Download Fibromyalgia Awareness Poster


10 Surefire Signs That You Have Fibromyalgia

For many suffering from fibromyalgia, the symptoms can go undiagnosed for years before finally being properly attributed to this chronic condition. Since fibromyalgia is still a relatively unknown and misunderstood condition – many who suffer from it may not even realize their condition has a name.
To help increase awareness about fibromyalgia and its symptoms, we’ve put together a list of 10 signs that you may be suffering it. Of course, if you are experiencing any of these symptoms, consult your doctor to get a proper diagnosis and to explore treatment options best suited to your situation.


Gut Infection Could Underlie Symptoms in Chronic Fatigue Syndrome

Over the past couple of years the Whittemore-Peterson Institute has been quietly digging into the human gut.  They found that the duodenum –  the first section of the small intestine –  of  many people with ME/CFS is inflamed and has become infiltrated with lymphocytes (disease-fighting white blood cells) – a clear sign that the immune system is on the attack.
Further investigations indicated that innate immune cells called plasmacytoid dendritic cells (pDCs) were present in higher than normal levels.  The first part of the immune system on the scene of a pathogen attack, the innate immune system initiates a kind of a broad inflammatory attack against pathogens. It’s the innate immune system that’s behind those flu-like symptoms you experience when you get a cold.


Can Heat Therapy Reduce Fibromyalgia Pain?

Alternative Medicine Meets Fibromyalgia Thisi treatment resistant group of fibromyalgiia patients was in a lot of pain It was a tough group of fibromyalgia patients that a team of alternative medicine and mind/body practitioners took on. They had not responded well to other therapies and had so many co-morbid disorders (over 700 diagnoses in total) that the authors stated they would “not be presented due to their complexity and scope.” The average visual analogue pain scale scores averaged out at about 7.0 which meant they were in severe pain.
They had responded so poorly to treatments that they were picked to participate in an extended in-hospital stay where the Austrians threw the alternative medicine book at them.  Over their approximately two week stay everyone received phytotherapy/mind-body therapies, hydrotherapy, lifestyle regulative therapy and movement therapies.  In addition some people received detoxification, neural therapies, homeopathy and diet advice.  One group received heat treatments (plus the other other therapies) while the other didn’t.


2014 in ME/CFS and Fibromyalgia: The Biggest, Best, Least, Most and Strangest Events

2014 turned out to be quite a year.  Major, major studies were launched, the P2P report turned out to be surprisingly helpful, two conferences provided positive news, Stanford University came into its own as an ME/CFS research center and much more. All in all it was a year of progress. We have a long way to go but more progress occurred in 2014 than in any year I can remember. It’s a year to build on…. Check out the biggest, most, least and best of 2014 below…


Chronic Fatigue Syndrome Articles Making Waves in the Medical Community 

Wrong Name  – Real Illness 
“… for the scientists and clinicians in the field, the phenomenon (chronic fatigue syndrome) is as real as diabetes or atherosclerosis” – Miriam Tucker 

Think physicians aren’t interested in chronic fatigue syndrome? They may not be good at treating it and many may not know much about it, but a recent article suggests physicians who are committed to keeping up with the news are definitely  interested. Almost two weeks after Medscape published an article on chronic fatigue syndrome (ME/CFS) titled “Wrong Name Real Illness” it was still – according to the physicians on Medscape (not patients)  – the most popular article on the huge Medscape website.


5 Ways You're Not 'Living' With Chronic Illness

 A fine line, ladies and gentleman, its what stands between living with chronic illness and being alive with chronic illness. I've straddled it a few times, but I've figured out some of what on the other side and here's what I know:
1. You're not living with a chronic illness if you're hunting for the why full time.
Read on


The pitfalls of modern medicine: what you need to know

Before diving head first into a very controversial topic, I shall wet my feet by pacifying all those staunch defenders of modern medicine: . . . . 
“It’s not a miracle, but a simple naturopathic approach that opens new doors when modern medicine slams them shut in your face.”
“[in western medicine] the body is seen as a machine with different mechanical parts that work independently and can be treated independently, instead of seeing all bodily systems as a whole.”


Fatigue & Brain Fog: Could You Have a B-12 Deficiency?

A feeling of being tired all the time. Problems with memory and concentration. Trouble sleeping. Diarrhea and/or constipation. These can all be important signs of the body's need for more vitamin B-12. 
Vitamin B-12 (cobalamin) is an essential nutrient, meaning it is required for normal body functioning but cannot be produced by the body. Therefore, it is necessary to obtain the B-12 our bodies need through the food we eat and/or dietary supplements. 
A vitamin B-12 deficiency is relatively common - thought to affect approximately 15% of the general population. That percentage goes much higher among people with chronic illness. 
Because so many people are deficient in B-12 - particularly people with fibromyalgia and ME/CFS - and because a number of FM and ME/CFS specialists recommend high doses of B-12 for their patients, ProHealth's founder, Rich Carson, set out to develop the most potent B-12 supplement available.


Symptoms of Vitamin B 12 Deficiency

Vitamin B-12 deficiency is linked to several health issues. Anemia, depression, nerve damage, memory issues, and much more. The two most common symptoms linked to B-12 deficiency are depression and fatigue. 
Serum vitamin B-12 levels is not a good indicator for vitamin B12 deficiency. Functional medicine doctors typically evaluate vitamin B-12 using more advanced lab testing.


The Biggest Chronic Fatigue Syndrome Treatment Trial Begins: Fluge/Mella On Rituximab

Doctor’s Fluge and Mella shocked the ME/CFS world with their 2009 case series and the 29-person 2011 study which found that about 2/3rds  of ME/CFS patients had a significant and positive response to the chemotherapy  and autoimmune drug Rituximab. With some patients achieving near miraculous recoveries, the results from Norway had the ME/CFS world buzzing.rituximab-chronic-fatigue
The big question is – what percentage of ME/CFS patients will respond?
As encouraging as the results were, however, they were but a prelude to the big study ahead – the one that will definitively tell us how effective Rituximab is in this disorder.


What Works Better than Antidepressants?

You’ve been programmed to believe that serotonin deficiency causes depression. If SSRI antidepressants actually cured people, we would not see escalating rates of suicide, agitation, anxiety, depression, bipolar disorder and PTSD (post traumatic stress disorder).
The secret sadness that people carry is not always apparent to the rest of the world. For example, I went to lunch with a new friend who has a picture perfect life by most standards. She confided to me that she has tried to kill herself three times and suffers with chronic depression. More than 2 decades has passed and not one psychiatrist or physician has ever suggested magnesium to this lovely lady. Not one! Unbelievable considering the studies that suggest magnesium plays some role in depression, even with suicidal tendencies.



Sign the petition to protect Joe Neilson


Campaign created by Matt Taylor  
Please sign this petition as a show of support for Joe and for Sussex Police to realise Joe needs protection NOW. 

Save the life of Joe Neilson.
Why is this important?
Joe Neilson is the UK's only independent disabled parliamentary candidate standing in the 2015 General election.

He stands for integrity and honesty in office and is the only witness in the Katrina Taylor murder cover-up of 1996.


A personal  note from Vicky

I had an interesting day in Hove with Simon Anderson and Russell Milton refining our Be Activated skills last week.  Simon is very highly regarded in this field and works with athletes to improve their performances.  The picture shows him working on Russell who I know some of you see for treatment. Russell specialises in sports injuries although if you are not sporty he can still help you!

Education: 5 Habits that can cause belly fat
Video of the week: An exercise to release the sacroiliac joint
Success Story: Yvonne Haggis 



After a series of cold and frosty mornings we have sunshine again.  Let's hope it's an omen for a good week for us all.
Keep well and be good.
Luv to all


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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