LIVING WITH ME

DESPITE a decade-long struggle with chronic fatigue syndrome, Jack Fitzpatrick looms as one of the most intriguing ruck prospects at this month’s NAB AFL Draft.

Fitzpatrick’s condition was brought on by a bout of glandular fever when he was just six and he deteriorated to the point where his parents had to lift him off the couch to use the toilet.

Fast forward 10 years and, through the advice of countless doctors and herbalists, Fitzpatrick learned to manage it well enough to progress from local club Wyndhamvale to the Western Jets.

http://www.afl.com.au

In 1982, Cynthia Toussaint, a 21-year-old North Hollywood, Calif., ballerina and actress, had a hamstring injury that wouldn’t heal. Her leg pain was so severe, it was like “being doused with gasoline and lit on fire.”

A new study links the XMRV virus to chronic fatigue syndrome.

As her symptoms grew worse, the muscles spasms contracted her right arm and leg so tightly that her limbs “folded up.”

Then came the fatigue — so deep and persistent, Toussaint could barely lift her eyelids on awakening and often would fall out of a chair with sleepiness.

http://abcnews.go.com

When it comes to chronic fatigue syndrome (CFS or ME/CFS), exercise is a contentious subject. That’s because of a symptom called post-exertional malaise; exertion makes symptoms worse. Still, some doctors, researchers, and official organizations recommend graded exercise therapy (GET) as a front-line treatment for the condition — sometimes ignoring all other treatment options other than possibly cognitive behavioral therapy (CBT).When it comes to chronic fatigue syndrome (CFS or ME/CFS), exercise is a contentious subject. That’s because of a symptom called post-exertional malaise; exertion makes symptoms worse. Still, some doctors, researchers, and official organizations recommend graded exercise therapy (GET) as a front-line treatment for the condition — sometimes ignoring all other treatment options other than possibly cognitive behavioral therapy (CBT).

http://chronicfatigue.about.com/

PatientsLikeMe (www.patientslikeme.com), the leading online community for people with life-changing conditions, announces the expansion of its fibromyalgia community to welcome patients with chronic fatigue syndrome (CFS), also know as myalgic encephalomyelitis (ME). By sharing information about their experience with CFS, patients can now find others just like them, including other patients who may have the newly discovered xenotropic murine leukemia virus-related virus (XMRV). The purpose of this expansion is for PatientsLikeMe to research the impact XMRV has on CFS patients.

http://www.earthtimes.org

A lot of people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) develop bladder pain and other bladder-related symptoms that can be severe. These symptoms, though, are NOT related to FMS and ME/CFS — at least not directly.

A condition called interstitial cystitis (IC) is a common overlapping condition for us. It can cause abdominal or pelvic pain, and it can mimic a urinary tract infection. In fact, it’s so frequently misdiagnosed that most people have IC for about 4 years before they’re diagnosed correctly.

http://chronicfatigue.about.com

She suffered through years of joint pain, fatigue, thyroid issues and neurological problems in the two decades that the disease went undiagnosed and misdiagnosed. She’d been told by different doctors that the source of her symptoms was fibromyalgia, chronic fatigue syndrome or multiple sclerosis. One physician even told her to see a psychiatrist because the pain she was experiencing was a mental problem.

http://www.visaliatimesdelta.com/

As part of a national public awareness campaign for chronic fatigue syndrome, the Chronic Fatigue and Immune Dysfunction Association of America has created a traveling photo exhibit in an effort to put a face on the elusive illness.

http://www.sdnn.com

Top Ten Things Not to Say to Someone with Chronic Fatigue Syndrome

http://www.empowher.com

The recent discovery of retrovirus XMRV raises more questions than answers for me. Not surprising, this is very new research. Speculation and theories explode as people wonder how, or if, this will impact their lives.

First theory. XMRV causes Chronic Fatigue Syndrome. A good anti-viral is all that’s needed and we’ll all be cured. We all like that one.

http://www.empowher.com

How do you rate fatigue, or the myriad other symptoms that come with chronic fatigue syndrome (CFS or ME/CFS)? How do you rate your overall functionality (or lack thereof) in a way that doctors can understand with just a glance at your chart?

When it comes to other major health issues, we have scales. Any oncologist can look at any cancer patient’s chart and see exactly what disease stage they’re in. As flawed as the standard pain scale may be, at least it’s something. Yet with millions of people’s lives derailed by chronic, debilitating symptoms we have no universally recognized way to describe where an ME/CFS patient “is” in terms of disease severity or recovery.

http://chronicfatigue.about.com

Among the many questions surrounding the recently discovered XMRV retrovirus link to chronic fatigue syndrome and possibly fibromyalgia is: how is XMRV transmitted?

http://chronicfatigue.about.com

A new study conducted in Germany contradicts at least two earlier studies by finding no link between prostate tumors and a virus that had been found in some tumors. University of Utah researchers recently reported that they found traces of a virus called xenotropic murine leukemia virus-related virus, or XMRV, in more than quarter of human prostate tumors, particularly those that are most aggressive.

http://latimesblogs.latimes.com/

A decision on Hemispherx BioPharma’s new drug application for Ampligen, twice delayed by the FDA earlier this year, is still in limbo.

William A. Carter, CEO of the Center City biotech company, said last week the company is responding to issues raised by the Food and Drug Administration during its review of Ampligen, an experimental treatment for chronic fatigue syndrome.

http://philadelphia.bizjournals.com/

By Zachary Sklar

Special to The Washington Post

So maybe we’re not all slackers. Maybe it’s not all in our heads, as many employers, psychiatrists, friends and even family members have implied over the years. Maybe the debilitating set of symptoms known as chronic fatigue immune dysfunction syndrome is a legitimate illness, such as pneumonia or tuberculosis. And maybe, according to a study published recently in the prestigious journal Science, it’s actually caused by a virus.

http://www.mailtribune.com

The researchers monitored 301 adolescents with the infection. Six months after the mononucleosis diagnosis, 70 patients (24 percent) had not made a full recovery.

Thirty-nine of these subjects were diagnosed with chronic fatigue syndrome, reflecting 13 percent of the original group of 301.

Six months later, at a 12-month follow-up visit, 7 percent had chronic fatigue syndrome, and at 24 months, chronic fatigue syndrome persisted in 4 percent. That is about 20 times higher than in the general teenage population.

All 13 patients who still had chronic fatigue syndrome at 24 months were female and, on average, they reported worse fatigue at 12 months.

http://www.calgaryherald.com

Chronic fatigue syndrome (CFS), or myalgic encephalitis (ME), affects over 17 million people worldwide and has been debated as to whether it is a real condition or a physiological issue. Its origins have been difficult to trace but scientists now believe that a virus, xenotropic murine leukemia virus-related virus or XMRV may be a cause. AMRV has also been implicated in an aggressive form of prostate cancer

http://www.efitnessnow.com/

Millions of people worldwide have the prolonged and severe fatigue and body aches of chronic fatigue syndrome, a poorly understood ailment sometimes blamed on psychological problems. Now, in “Virus Is Found in Many With Chronic Fatigue Syndrome,” the New York Times science writer Denise Grady reports on a little known retrovirus called XMRV that may cause or at least contribute to the condition.

http://consults.blogs.nytimes.com/

Chronic fatigue syndrome (CFS) is a disease that afflicts people with extreme and debilitating tiredness that lasts for many years and isn’t relieved by rest. Some estimates suggest that it affects up to 1% of the world’s population. We don’t know what causes it. Prostate cancer is one of the most common cancers in the world and kills around 221,000 people every year. Its causes too are largely unknown. What do these two diseases have in common? They have both been recently linked to a virus called XMRV (or xenotropic MulV-related virus in full).

http://scienceblogs.com/

Quality sleep is often only a dream when you have fibromyalgia or chronic fatigue syndrome. According to a British researcher, just about everyone would sleep better alone rather than sharing a bed with someone.

http://chronicfatigue.about.com

Sir Peter Spencer, CEO, Action for M.E. and other M.E. charity representatives will attend a multi-disciplinary workshop for researchers, organised by the Medical Research Council (MRC), 19-20 November.

The meeting, chaired by Professor Stephen Holgate, MRC Professor of Immunopharmacology from Southampton University, aims to encourage new research into M.E./CFS, harnessing the latest technologies and scientific thinking to develop a proper understanding of the underlying disease mechanisms.

http://www.afme.org.uk

Chronic fatigue syndrome (CFS) can leave you feeling unmotivated and devoid of energy. However, there are several steps you can take in everyday life to combat your fatigue and regain your energy.

http://health.ivillage.com

By Kate Lahive
A SHEFFIELD specialist in Colon Hydrotherapy says that people with a range of health problems – including candidiasis can benefit from the water based therapy.
Last week a feature in Healthy Living claimed that people with the yeast infection were not recommended to have Colonic Irrigation to clear their system of an overgrowth.

But Jay Judge who has over 18 years experience and runs a successful practice, The Sheffield Colon Hydrotherapy in Netheredge says this is not the case – as she has helped hundreds of people with the condition over the years.

http://www.thestar.co.uk

A special meeting of the Scottish Parliament’s Cross Party Group on ME  was held on 6 May to discuss the Scottish Good Practice Statement on ME-CFS. Dr Gregor Purdie agreed to significant changes. A proof copy of the revised version was made for the event in the Scottish Parliament on 14 May, on the understanding that the document would need to go through a further stage of peer review by healthcare professionals.

http://www.meassociation.org.uk

The ME Association wrote to Sir Liam Donaldson, Chief Medical Officer at the Department of Health, in October in relation to XMRV research – in particular the situation regarding blood donation and blood transfusion services here in the UK.

http://www.meassociation.org.uk

From the Eastern Daily Press, 13 November 2009 (story by Hayley Mace)

Hundreds of people who suffer from a debilitating condition have been promised they will have access to care from a consultant from early next year.

http://www.meassociation.org.uk

Examples of good practice where the health service has been involved in providing care in the home or local community to people with ME/CFS are being requested by Richmond and Kingston ME Group in south London – to be used in a local health care campaign.

http://www.meassociation.org.uk

Parliamentary questions about making ME/CFS a notifiable illness in schools and the level of Government funding for biomedical research into illness in the 2008-9 financial year were answered in the form of written replies yesterday (5 November 2009).

http://www.meassociation.org.uk

Version 3 clarifies some of the points and queries raised in the previous two summaries.  It also updates the situation on XMRV research in the UK, testing for XMRV and refers to our letter to the Chief Medical Officer regarding blood supplies and blood donation.

http://www.meassociation.org.uk

The ME Association wrote to Sir Liam Donaldson, Chief Medical Officer at the Department of Health, on Tuesday 27 October about XMRV research.  In particular, we raised the situation regarding people with ME/CFS and blood donation.

http://www.meassociation.org.uk/

There’s one main public event listed in our Events Calendar for this month – an ME Derbyshire event being held on Saturday November 28 at which Professor Tony Pinching will be the main speaker.

http://www.meassociation.org.uk

From the Weston and Somerset Mercury, 30 October 2009.

We’ve all had those mornings on which we would choose to stay in bed. But imagine being so tired for every hour of every day that staying awake becomes a struggle, and you may just get an idea of what life is like for Stephanie Spearing.

At nine-years-old she should be enjoying all the things normal children that age do.

But a chronic fatigue syndrome called myalgic encephalomyelitis, more commonly known as ME, means that instead of swimming, ballet and tap, the Nailsea youngster spends much of every day asleep, or when she is awake, in pain.From the Weston and Somerset Mercury, 30 October 2009.

http://www.meassociation.org.uk

Quality sleep is often only a dream when you have fibromyalgia or chronic fatigue syndrome. According to a British researcher, just about everyone would sleep better alone rather than sharing a bed with someone.

Dr. Neil Stanley points to a study that showed couples had 50% more sleep disturbances when they shared a bed. That could lead to problems for anyone, but for us, sleep disturbances are especially damaging — they make everything about our conditions worse.

http://chronicfatigue.about.com/

You see it on just about every list of treatment/management options for fibromyalgia and chronic fatigue syndrome — “Lifestyle changes.” It’s one of those simple phrases that is so broad that it becomes almost meaningless; what kind of lifestyle changes do you need to make? How many? To what part(s) of your life?

We’re an easy group to overwhelm, so I’m certain I’m not the only one who’s stared at that phrase and though, “I’m sure I DO need to change my life, but where do I start?”

http://chronicfatigue.about.com/