LIVING WITH ME

Cher’s ordeal at the hands of the Epstein-Barr Virus has been well-documented over the years, and the pop diva has never kept her condition a secret.

In 1992, Cher took some time off from her career and it was widely reported that the virus was responsible. “My experience was it was really a physical illness but it does make you depressed as well,” she told the BBC. “It’s a virus you have it’s called Epstein Barr virus and the disease it gives you is chronic fatigue.”

http://www.celebrities-with-diseases.com

OK, so it makes your breath bad — that’s a small price to pay for a food that reduces inflammation, kills nasty bugs in your system, and tastes great on toast.

http://chronicfatigue.about.com

The charity Coeliac UK says there’s widespread misdiagnosis of the condition. It carried out a survey of more than 1,600 of its members and found that nearly 60% of them had previously been incorrectly diagnosed with irritable bowel syndrome (IBS) instead of being tested and diagnosed with coeliac disease.

The charity says one in 100 people in the UK have coeliac disease, an auto-immune condition caused by gluten intolerance.  Left untreated by the diet it can lead to osteoporosis, infertility and bowel cancer.

http://www.webmd.boots.com

Virtual constellations of blogs and websites revolve like satellites around the weight and gravity of Chronic Fatigue Syndrome. Each of these sites is a thing of beauty and value, representing a world unto itself.

It would be impossible to highlight all of them but I’ve selected a few for you to explore.

Some action in the Chronic Fatigue Syndrome ghetto has gotten us craning our necks on our cots these days. Or … there might be some action.

http://www.empowher.com

This study investigates the response of the underlying sleep disorder associated with Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) to treatment. We retrospectively reviewed 118 cases clinically consistent with CFS or FM, treated in a neurology practice.

http://www.prohealth.com

Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) are chronic conditions that affect every aspect of every day for the sufferer. Bruce Campbell recommends the 1% Solution.

While the 1% Solution will not cure CFS or FM, Campbell’s suggestions can become significant factors in making life more manageable. Here are a few of those suggestions.

Taking regular rest breaks can increase stability and restore energy levels somewhat. If you can be in contact with other people also dealing with Chronic Fatigue Syndrome or fibromyalgia, this can help to reduce the sense of isolation, and increase a sense of community and belonging that has been sorely lacking for many.

http://www.empowher.com

While researchers have yet to pin down the exact causes and mechanisms involved in chronic fatigue syndrome, most of them are now agree that the condition involves significant problems with the immune system, and that immune dysfunction leads to many of the characteristic symptoms.

The immune system is complex, and research can be hard to understand. To help you get a better handle on what some of the terminology means, here are definitions of 15 immunological terms related to chronic fatigue syndrome:

http://chronicfatigue.about.com

Health care is expensive. It can be hard enough to pay for the multi-pronged care those of us with fibromyalgia and chronic fatigue syndrome  typically need even if you’re able to work and have good insurance. What happens if you’re underinsured, uninsured or unemployed?  Those are questions I’m being asked more and more.

I wish there was an easy answer, but there’s just not. There are, however, ways you can save money on health care, and there are places to turn for help. I’ve compiled these resources from around the About.com Health network

http://chronicfatigue.about.com

Are you staying cool and hydrated during this hot weather? Those of us with fibromyalgia and chronic fatigue syndrome should take extra precautions to avoid dehydration and heat exhaustion/heat stroke.

Most of us have some form of temperature sensitivity, which can mean that we get overheated easily and our bodies just won’t cool down like they should.  That’s believed to be because of autonomic nervous system dysfunction, or dysautonomia.  The autonomic nervous system controls homeostasis — things like temperature regulation, heart rate, blood pressure, and physical responses to stress.  Sure seems to fit, doesn’t it?

http://chronicfatigue.about.com

Problem statement: Several investigators have indicated that case definitions for Chronic Fatigue Syndrome (CFS) are characterized by vaguely worded criteria that lack operational definitions and guidelines. The most widely used CFS case definition is the Fukuda et al. criteria, which uses polythetic criteria (i.e., patients are only required to have four out of a possible eight symptoms).

http://www.prohealth.com

Q: I’ve seen claims that people who went on a gluten-free diet have lost all symptoms of fibromyalgia and chronic fatigue syndrome. Is this possible? What’s going on?

A: This is definitely a topic that’s coming up a lot. So far, we don’t have enough research to know for sure what’s happening in these cases. I suspect we’ve got a few things happening:

http://chronicfatigue.about.com

Still reeling from the retirements of Libby Trickett and Jodie Henry, the Dolphins are now getting their head around Campbell pulling out of August’s Pan Pacs and October’s Commonwealth Games.

Campbell, 18, had been due to tune up for the year’s two biggest meets at this week’s national short course titles in Brisbane.

Instead, Campbell is unsure when she will return to full training again due to a “mild form” of chronic fatigue syndrome.

However, a stoic Campbell described it as a “hiccup” ahead of her hurriedly reassessed goal – the 2012 London Olympics.

http://news.smh.com.au

Researchers have been exploring to the depths of science possible for the last 25 years trying to find out what causes and how to treat chronic fatigue syndrome  (CFS). While many discoveries have led to identification of body-wide effects of CFS beyond fatigue, there is still no known cause or method of treatment for CFS as a whole.

http://www.empowher.com

Caffeine is such an ingrained part of most people’s daily life that we often don’t realize how much we’re getting. If you have fibromyalgia or chronic fatigue syndrome, it’s definitely something to think about.

We like caffeine because it gives us energy, and who needs energy more than we do? The problem with it, though, is that after the initial burst, it can make you feel worse. That’s true for everybody, but even more so for many of us — it artificially speeds up an energy-depleted body that may not be able to tolerate an increase in activity, and that can put you at risk for a symptom flare. It’s like an energy credit card with a really high interest rate.

http://chronicfatigue.about.com

Researchers at the National Institutes of Health and the Food and Drug Administration, citing a need to re-evaluate their data, have delayed publication of a new study believed to provide evidence of a link between chronic fatigue syndrome and a little-known retrovirus.

The study, already peer-reviewed, was supposed to appear in the prestigious Proceedings of the National Academy of Sciences. The delay has sparked an outcry on blogs and social networking sites among chronic fatigue patients, who are desperate for answers about their debilitating illness and fear that important scientific data are being suppressed.

http://www.nytimes.com

Researchers believe they’ve discovered the way herpes viruses invade cells — something that had long remained a mystery. The new study, published in Nature Structural & Molecular Biology, provides what they say is a detailed map of the herpes virus “cell-entry machinery.” Researchers believe this finding could lead to new antiviral drugs that are effective against the family of viruses.

http://chronicfatigue.about.com

When the University of Nevada, Reno’s $77 million Center for Molecular Medicine opens in September, it will house 40,000 mice and state-of-the-art laboratories to conduct research into possible cures for muscular dystrophy, breast cancer, stroke, herpes and Chronic Fatigue Syndrome and other illnesses.

The 116,500-square-feet structure will allow the university to expand its research and generate more federal grants, said Thomas Kozel, a professor of microbiology and immunology and the center’s project manager for the School of Medicine.

http://www.rgj.com

7-July-2010 — Applied Kinesiology Center is pleased to announce that Austin Chiropractor, Dr. Kieran Kuykendall, has helped hundreds of locals find relief from chronic fatigue syndrome without using drugs. Chronic fatigue syndrome is difficult to identify and even harder to determine the best method of dealing with. Modern medicine chooses to take a symptomatic approach and use a variety of medications to provide relief from symptoms. Dr. Kuykendall’s wellness approach works to provide long lasting relief from the condition without all those medications.

http://www.officialwire.com

A study that supports the controversial link between chronic fatigue syndrome and a new type of virus has been blocked from being published in a leading scientific journal even though it had been accepted for publication by its editors. The study, by virologists working for the US Government’s Food and Drug Administration (FDA), is believed to support earlier findings published last October claiming that patients with the syndrome, also known as ME, are likely to be infected with a virus called XMRV, which some scientists believe may trigger the condition.

http://www.independent.co.uk

It seems like flax is everywhere these days — it’s certainly one of those nutrition “buzz words” at the moment, as evidenced by all the grocery store labels boasting about it, in cereals, granola and a host of other products.

Not all of these nutrients du jour are worthy of the hype, but flax appears to be. What’s more, many of the things it contains are things those of us with fibromyalgia and chronic fatigue syndrome need.

http://chronicfatigue.about.com

Jennifer Hutchinson always knew she had bright children. Priscilla, now 16, needed glasses at six which enhanced her love of reading. Her brother Vinnie, 13, also excelled at a young age, but preferred sport to academics. At school he made slow progress academically. After being tested to establish the basis for his difficulties, he was diagnosed with dyslexia.

It was judged not severe enough to justify further help from school. The future seemed bleak with no obvious solutions available from the education sector.

When Priscilla reached intermediate level, she began to complain of tiredness.

“I felt like I had sand bags tied to me, and everything was an effort.”

She was diagnosed with Chronic Fatigue Syndrome (CFS) and became so ill she could no longer attend school. She started correspondence from home. Then she too began having issues with reading, such as headaches, blurriness and words appearing to `move’.

http://www.stuff.co.nz

Researchers say they’ve discovered a key factor in the body’s production of T cells, white blood cells that are important to immune function. Some studies show people with chronic fatigue syndrome have reduced T cell response to certain infectious agents.

The new research, which is about to be published in the prestigious journal Science, suggests that manipulating a newly discovered genetic regulator, called Ctip2, can influence some types of immune function.

http://chronicfatigue.about.com

How many medications are you on for fibromyalgia and chronic fatigue syndrome? How many of them have similar effects on your brain chemistry? If it’s more than 1, you could be at risk of developing serotonin syndrome — a potentially fatal complication of serotonin-boosting drugs.

http://chronicfatigue.about.com

The highly publicized Reno study of chronic fatigue syndrome (CFS) at the Whittemore Peterson Institute in Reno has been challenged again—but has also apparently received its first high-level support.

http://www.newsreview.com

The alpha-EEG sleep  anomaly was first described by researchers who used the term alpha-delta sleep to characterize a mixture of alpha and delta waves in a small group of psychiatric patients described as having generalized feelings of chronic somatic malaise and fatigue. Other researchers found that fibromyalgia  patients had an excess of alpha-EEG not just in slow wave sleep, but in all NREM (non-rapid-eye-movement) sleep stages. Further, these same researchers discovered that the alpha-EEG sleep anomaly could be reproduced experimentally in healthy individuals by disrupting stage 4 NREM sleep. Alpha-EEG has been correlated to overnight increases in pain and decreases in energy; and the alpha-EEG anomaly may lead to more arousability during sleep, with resultant unrefreshed sleep.

http://www.psychologytoday.com

Two groups of researchers studying a potential link between chronic-fatigue syndrome and a virus called XMRV have reached contradictory conclusions, according to people familiar with the findings.

One group found a link, and the other didn’t.

Their reports were held from publication after being accepted by two science journals—a rare move that has caused a stir among scientists in the field.

http://online.wsj.com/article

Despite the misunderstandings that often arise from the name Chronic Fatigue Syndrome, the truth is many people with this illness have trouble falling asleep and staying asleep, and what sleep patterns they do have are not refreshing.

Many people with ME/CFS have multiple sleep problems. Since serious illnesses such as ME/CFS require extra sleep as the body and brain attempt to heal, this lack of restful sleep compounds an already damaging situation.

http://www.empowher.com

Even in the drug-centered Western health care system, doctors recommend ginger to help with nausea, vomiting and digestion. In Eastern medicine, it’s believed to help treat many problems common in those of us with fibromyalgia and chronic fatigue syndrome: flu-like symptoms, headaches and painful periods.  Some studies suggest it may also be effective against heart disease and cancer.

http://chronicfatigue.about.com

More XMRV Mysteries: Up to now the evidence surrounding a possible link between the XMRV virus and chronic fatigue syndrome has been contradictory — and that confusion isn’t likely to lift with the latest, as-yet-unpublished research, the WSJ reports. Two groups of researchers, one from the CDC and one from the FDA and NIH, have also come to different conclusions about whether XMRV is more commonly found in the blood of CFS patients. Papers submitted by the groups to different journals have gone through the peer review process but are being held at the government’s request until their differences can be explained, the WSJ says.

http://blogs.wsj.com

Two of the most common overlapping complaints in people with fibromyalgia and chronic fatigue syndrome are irritable bowel syndrome (IBS) and food sensitivities. Now, research is beginning to identify a sub-type of IBS that’s actually linked to food intolerance.

http://chronicfatigue.about.com

Objectives: Until now, there has been a lack of fundamental research into the pain experienced in chronic fatigue syndrome [CFS]. The aims of this study were to:

1. Investigate the pain experiences of people with CFS with a range of disability, and

2. Identify specific pain characteristics of people with CFS.

http://www.prohealth.com