New grandma Jody Smith shares her frustrations about not being able to visit the new baby…

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My daughter and son-in-law just had a baby last week. We are thrilled. But we won’t be able to see the baby or hold her any time soon. We won’t be able to take over little gifts or help out with housework or babysitting.

The little family lives a province away and we can’t afford to make the trip. And that includes not being able to afford the energy it would require.

People automatically — and naturally — ask if we’re going to fly out to see them, and I must repeat to one then another that, no we won’t be able to go.… Read More

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Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS …

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We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.

 It is not just a case of stigma. Yes, who wants to admit that they have ME/CFS? But then who wants to openly admit they have AIDS or hepatitis C, or that they wear a colostomy bag?

 All illnesses are stigmatised: when you get ill people prefer to stay away.… Read More

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Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but … she’s back …

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A dozen years ago I was so decimated by ME/CFS that I couldn’t read, watch TV, or flip through a magazine. My days were spent zipping back and forth along the spectrum of waking and sleeping.

I was wide awake staring at the ceiling, undulating with a seasick vertigo and parasthesia. I was fitfully in and out of sleep. I was sleeping deeply for long and irregular hours, waking sometimes in the middle of the night, in the middle of the afternoon, in the evening … interesting that rarely did I wake at a “normal” hour of the morning.… Read More

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Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS.

The focus of this article is to build upon the previous article and explore how the hypotheses surrounding ME/CFS and nitric oxide weigh up against one another. It is therefore advised to read Part 1, which can be found here, first.

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In the last article we explored what exactly nitric oxide is, how it is produced in the body and the numerous different functions it has over a variety of different bodily systems.… Read More

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Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses on what nitric oxide is, how its produced and what exactly it does …

nitric oxideOver the years there have quite a number of proposed disease mechanisms relating to nitric oxide (NO) problems of patients suffering with ME/CFS. Studies have however, over the years, proven somewhat inconclusive in the past.

Dr. Pall is historically one of the staunch believers in the hypothesis that ME/CFS is a result of abnormal functioning of the nitric oxide cycle and the downstream effects this can have.… Read More

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Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer …

Exercise testing at Dr Keller's lab

Exercise testing at Dr. Keller’s lab

Given the doubt, scepticism and even denial of benefits that often confronts ME/CFS patients, it’s not surprising that many patients crave clear-cut, objective evidence of physiological problems in the illness. Preferably something that will explain at least some of the perplexing symptoms. Something that will say: “this is real”.

And finally it seems researchers might be closing in on this.

Two-day maximal exercise tests promise to provide objective evidence for the most striking and unusual feature of the illness, the exhaustion and flare of symptoms following exercise, called post-exertional malaise.… Read More

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Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients …

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Long, lazy August afternoons. The sun is shining, the birds are singing, the garden growing, and the children are free from school. For many this time of year means holidays, family get-togethers, and a period of general relaxation.

However, for sufferers of severe ME, this time of year is rapidly becoming a time of united effort to get severe ME onto the radar of the general population.

The time has once again come for us to report upon the  Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.… Read More

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Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut …

IIMEC9logo2wThis is the second in a series of articles reporting on the 9th Invest in ME International ME Conference (IIMEC9), held as usual in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 30th, 2014.

You can view the full conference programme (with biographies of the speakers) here, and the Conference Journal is available as a PDF document here. Invest in ME have posted a conference report by Dr.Read More

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Jody Smith has been taken by surprise by the value of having a dog when dealing with ME/CFS …

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Cleo

There’s been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They’ve been fairly indifferent to my presence and we’ve shared a live-and-let-live type of relationship over the years.

Then I got a dog.

I didn’t even want this dog in the beginning, to be honest. My son Duncan had adopted Cleo, a German Shepherd-Lab mix that had ended up at the Humane Society after an injury that required amputation of her back left leg.… Read More

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Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.

Diagram showing the location of the parathyroid gland

Diagram showing location of parathyroid glands

Chronic fatigue syndrome or ME/CFS is, whether we like it or not, by current definition a diagnosis of exclusion. The biggest diagnostic task is therefore differentiating it from the plethora of other disorders that also have a fatigue component.

ME/CFS may be distinguished from other causes of fatigue on the basis of certain presenting symptoms such as cognitive dysfunction, which is not present in almost all other fatigue-producing disorders. Once a specific cause of fatigue has been diagnosed, CFS is then excluded, by definition.… Read More

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For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room … 

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I have two clocks in my living room. One clock is on the wall across from where I usually sit at my computer. The other is on the wall to my left. I guess this might be an unusual arrangement, not to be found in most homes, but it has been practical for me.

I have had long intense bouts of what I have called tendinitis over the years, affecting my neck, shoulders, arms, hands, legs and feet.… Read More

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Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity

IIMEC9logo2wThis is the first in a series of articles reporting on the 9th Invest in ME International ME Conference (IIMEC9), held as usual in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 30th, 2014.

You can view the full conference programme (with biographies of the speakers) here, and the Conference Journal is available as a PDF document here. Invest in ME have posted a conference report by Rosamund Vallings, and Phoenix Rising tweeted the conference live.… Read More

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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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