If you’re ever at Jody Smith‘s house, don’t bother asking anybody if they are hungry …

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One of the most ridiculous questions you can ask in my house is “Are you hungry?”

There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.

Or rather, we knew we should have eaten something about twenty minutes ago and saved ourselves this distress.

For me, this realization hit after I started eating low carb.… Read More

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Simon McGrath looks at theories that microglia, the brain’s immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.

In Part 1, he described how the body reacts to infection or wounding with a “sickness response” that partly resembles ME/CFS, and how the microglia are the last step in the physiological mechanisms that lead to sickness response.

Could microglia be behind the symptoms of ME/CFS?                   Artist’s image of a microglia.  © 2012 Hagop Kaneboughazian

Sickness response is a good thing, helping us survive by resting to fight off infection. But it evolved as a short-term response, and may be harmful if it sets in for the long-term, perhaps playing a role in ME/CFS.… Read More

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Simon McGrath looks at theories that microglia, the brain’s immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.

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‘Sickness Behaviour’: the immune system releases cytokines in response to infection, which activates microglia in the brain and creates symptoms including fatigue, pain and cognitive problems.

Your dog can’t tell you when she’s feeling sick, but even so, you know. She moves slowly, she doesn’t eat, she sleeps a lot, she curls up in a corner by herself. “Sickness behavior” is shared by all mammals, and in humans it’s been shown to include fatigue, cognitive problems, body aches and pains and disturbed sleep.… Read More

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Andrew Gladman muses upon what lessons he has taken from two years of ME/CFS.

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If you’re aware of my previous articles here at Phoenix Rising  then it’s pretty clear that I don’t generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write about it.

Every now and then, however, I like to dip my toes in and test the waters per say at the other end of the spectrum.

Recently I’ve been musing upon what my illness has taught me about myself and the greater world we live in.… Read More

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Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS … pixabay-alice-wonderland-2

If you’re not a fan of hallucinatory drugs you’re gonna hate ME/CFS.

When I first became ill in March of 1992, the feeling of altered reality inside my head, the shaking which could not be seen in my arms and hands and which later spread to the rest of my body, the uncertainty with which I navigated, never quite sure I could physically accomplish a walk across the floor without falling or bumping into things … these things were bizarre and alarming.… Read More

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After having lived for years with ME/CFS, Jody Smith learned there’s more to this beast of an illness than she realized, and that what might help one person may not help others …

pixabay-question-markWhen I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS.

I guess I thought that whatever it was that I had was what you had … what they had … what that person laying on their face over there had …

Turns out I couldn’t have been more wrong.

I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.… Read More

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Graham, Janelle and Bob, have once again excelled themselves with their latest take on the ‘poisoned apple’ that was the PACE Trial…

PACE Recovery Song Video 6Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….

Whoops, sorry there! I got confused for a moment. Wrong fantasy tale…

Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.

A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled diligently and bravely to produce an analysis of the faults of the trial and, hosted by Phoenix Rising, published their report.… Read More

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Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS …

A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.

Neuroinflammation may lead to ME/CFS symptoms.  credit: Canstock

Neuroinflammation may be behind ME/CFS symptoms
Photo credit: Canstock, www.canstock.com

Back to the future

What makes this study so fascinating is that it provides tantalising evidence supporting not only of current views that inflammation in the brain is central to understanding the disease, but also of Melvin Ramsay’s original name of ‘myalgic encephalomyelitis‘.… Read More

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Jody Smith finds that even with ME/CFS, new life as symbolized by the mighty egg, can still spring forth …pixabay-eggs
 
The egg has been a symbol of new life since ancient times. Recently, this symbolism has struck home for me in my own life.
 
I’ve eaten a lot of eggs in my life. Particularly in my vegetarian years, I leaned heavily on eggs. Fried, boiled, on their own and in omelets … And I confess in retrospect that I took them for granted. They were a mainstay that I perhaps didn’t fully appreciate till I could no longer eat them.
 
In February of 2012 I was vaguely aware of a queasiness that didn’t go away, which over a few more days turned into sharp pain in my stomach that also didn’t go away.

Read More

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In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, ‘searcher’ delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results …

CFI LogoMembers of the Chronic Fatigue Initiative (CFI) and Scott Carlson, the executive director of the Hutchins Family Foundation, gave a talk at lunch-time on the second day of IACFS/ME to share their research thus far and their future plans.

This presentation was one of the highlights of the conference to me because of the high quality research CFI is doing. Read More

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Leptin

April 16, 2014

Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.

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Leptin Molecule. Image by I, Vossman via Wikimedia Commons.

It’s safe to say that the past couple of weeks, following the IACFS/ME 2014 conference, have been something of a whirlwind in terms of new ME/CFS research being unveiled.

Now that the dust has had a chance to settle let’s take a step back and discuss a topic that many consider to be one of the most promising findings discussed at the conference.

Leptin seemed to be the word on many researcher lips. During the first day of the conference Anthony L.Read More

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In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course…

Bronllys 3My name is Maya, I’m 42 and live in Mid- Wales. I have had ME for 8 years, am mostly housebound and use a wheelchair outside.

In April 2012, I underwent a three week residential ME/CFS management programme at Bronllys Pain and Fatigue Management Centre, based in Brecon, Mid-Wales.

My GP has been very supportive since my diagnosis but had run out of ideas so, when she suggested pain management, I felt I had to give it a go.… Read More

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The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014…

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Dutch group ME/cvs Vereniging present their latest video followed by a chat session with Dr Charles Shepherd from the UK ME Association

ME/cvs Vereniging launched a series of broadcasts from expert clinicians and researchers in January 2013, as part of a government subsidized project called, “Science to Patients”.

Each expert has also taken part in Q & A sessions, enabling patients to ask questions on both theoretical and practical aspects of ME/CFS.… Read More

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Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks … 

pixabay-clockWhere I live, we recently went through a time change, compliments of Daylight Savings Time. Having ME/CFS, I don’t need to travel anywhere to get jet lag. I just need the clock to be turned ahead, or backward by one hour.

I know that not everyone lives according to Daylight Savings Time but it happens twice a year in much of the world. Do you experience a crash that happens to occur after one of the time changes of the year?… Read More

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The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point …

Diagram showing the location of the adrenal glands, above the kidneys.

Diagram showing the location of the adrenal glands, above the kidneys

While the frequent topics of conversation relating to ME/CFS appear to now be infectious agents, autoimmunity and often a dysfunctional nervous system, many patients and researchers still turn their attention to problems within the endocrine system, namely the adrenal gland.

As the gland within the body centred around stress responses, it is initially quite a logical place to look for problems.… Read More

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W. Ian Lipkin

Dr. W. Ian Lipkin.
Image courtesy of the Columbia University Center for Infection and Immunity

An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it!​

This week sees the launch of a major new crowdfunding campaign: the Microbe Discovery Project. The campaign aims to raise $1.27 million (£760,000; €910,000) by 31 December 2014 to fund world-famous virus-hunter Dr. Ian Lipkin’s ground-breaking study of ME/CFS and the gut microbiome – our intestinal ecosystem of bacteria, viruses and fungi.

The study

The study is spectacular, because of the series of crucial, cumulative steps that it makes to identify what might be driving our immune problems and hence our symptoms.… Read More

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It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the conference with a terrific summary from Dr. Antony Komaroff

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The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Four, the finale, March 23, 2014.

A very warm welcome to our final review from Day Four (March, 23, 2014), of the IACFS/ME four-day conference. It has been a marathon series of presentations and a real team effort to keep up the momentum.… Read More

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Day Three, and Searcher continued to deliver the goods. We hear about the PANDORA national survey results, a very big familial case study from Spain, results from the Canadian Community Health Survey, more results from epidemiological studies (and a look at treatments and comorbidities), then perhaps the key section of the day: the science of exercise testing and post-exertional malaise

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The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Three, Science Papers, March 22, 2014.

It’s Day Three (March, 22, 2014), of the IACFS/ME four-day conference and another packed research presentation agenda. Our summation continues from mid-morning after Searcher took a well-deserved break to try and recover some lost energy.… Read More

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Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who presents on enteroviruses and we close with Nancy Kimas and Dan Peterson discussing diagnosis and treatments…

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The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Two, Science Papers, March 21, 2014.

We really are getting stuck into some serious science from our top researchers. Day Two (March 21, 2014), of the IACFS/ME four-day conference featured the presentation of new scientific papers.… Read More

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The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to submit a solid review of some of the highlights…

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The 11th biennial IACFS/ME conference is being held in San Francisco from March 20-23, 2014

Conference objectives from Dr Fred Friedberg, IACFS/ME President: 

“The conference will a provide a number of fresh updated perspectives on CFS/ME, including new innovative professional workshops on management of the severely ill patient, pediatric CFS/ME, and an immunology primer for clinicians.… Read More

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