LIVING WITH ME

As someone who is at the end of a 16-month process of claiming employment support allowance (ESA), Melissa Viney’s recent Cif article about draconian incapacity benefits tests, and how they are failing the sick, really spoke to me. I’ve had ME/CFS (chronic fatigue syndrome) since 2007, and in April 2009 reluctantly ceased my work as an illustrator due to increasing symptoms.

http://www.guardian.co.uk

Temperature sensitivity, changing barometric pressure, low light levels, varying routines … whatever you blame it on, it’s rare to find someone with fibromyalgia and chronic fatigue syndrome  who doesn’t see a seasonal flux in symptoms. Sometimes it’s severity that changes, while other times it’s just different symptoms for different seasons.

http://chronicfatigue.about.com

The treatment and diagnosis of myalgic encephalomyelitis (ME) could be revolutionised by the results of a recent study.

This is according to Dr Neil Abbot, operations director of ME Research UK.

ME, also known as chronic fatigue syndrome, is sometimes diagnosed as post-viral fatigue syndrome.

http://www.privatehealth.co.uk

Do Epsom-salt baths ease the pains of fibromyalgia and chronic fatigue syndrome? They’re a common home remedy, but do Epsom salts really do anything? And if so, how?

I take Epsom-salt baths frequently and I believe they’re more effective than a hot bath without them. However, that’s not something I can prove or quantitatively measure.

http://chronicfatigue.about.com

After years of research, the link between Chronic Fatigue Syndrome and exposure to a virus  may finally be solidifying. A certain retrovirus appears to be present in extremely large numbers of people diagnosed with CFS, compared with control groups. While this does not mean that the virus actually causes Chronic Fatigue Syndrome, finding a correlation is a significant step forward.

http://www.expressnightout.com

When it comes to chronic fatigue syndrome, researchers are starting to ask: What’s the role of the virus known as “X”?

One of the confounding aspects of Monday’s PNAS paper that reported finding a family of retroviruses in CFS patients was that none of the viruses appeared to be XMRV, which many scientists have shortened to simply X. (The commentary accompanying the paper inspired this post’s title.)

http://blogs.wsj.com

MONDAY, Aug. 23 (HealthDay News) — Another study has found evidence that a mouse virus may play a role in chronic fatigue syndrome, a poorly understood disorder that causes incapacitating exhaustion and malaise.

Using blood samples collected in the mid-1990s from chronic fatigue sufferers from the New England area, researchers found evidence of gene sequences for murine leukemia virus (MLV)-related virus in the blood of 32 of 37 patients, or 86.5 percent.

http://www.businessweek.com

SCIENTISTS have found further links between a virus and chronic fatigue syndrome, a study published this week says.

Researchers from the National Institutes of Health, the Food and Drug Administration and Harvard Medical School analysed blood samples that had been collected 15 years ago from 37 patients with chronic fatigue syndrome. Of the subjects, 32 – or 86.5 per cent – tested positive for the murine leukaemia virus-related virus, the researchers found. In contrast, tests on 44 healthy blood donors detected evidence of the virus in only three of the subjects, or 6.8 per cent.

http://www.smh.com.au

Despite extensive research, no reliable biological marker for chronic fatigue syndrome (CFS) has yet been identified. However, hyperactivation of melanotrophs in the pituitary gland and increased levels of plasma alpha-melanocyte-stimulating hormone (alpha-MSH) have recently been detected in an animal model of chronic stress.

http://7thspace.com

Researchers said they had identified a family of retroviruses in patients with chronic fatigue syndrome, opening up a potentially promising new avenue of treatment for a debilitating disease that afflicts as many as four million Americans and 17 million people world-wide.

The finding will likely spur patients with the condition to seek treatment with drugs used to fight HIV, the virus that causes AIDS. Although HIV and the newly identified virus group are different, they are both retroviruses.

http://online.wsj.com

Fresh evidence linking chronic fatigue syndrome to a family of mouse viruses was reported in a U.S. government study that has spurred new debate over how to treat the disease.

Almost 90 percent of patients with chronic fatigue syndrome showed signs of infection with a group of mouse leukemia viruses in the study, raising more questions about the cause of the debilitating condition. The results suggest antiviral drugs, including Merck & Co.’s Isentress and Gilead Sciences Inc.’s Viread, should be tested for the condition, French researchers said in an accompanying editorial.

http://www.businessweek.com

NEEDHAM, Mass., Aug. 20 /PRNewswire-USNewswire/ — The National CFIDS Foundation Inc., of Needham Mass, has announced its formal disease model for Chronic Fatigue Syndrome (CFS) also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) as well as Myalgic Encephalomyelitis (ME). According to the NCF, a subgroup of patients with CFS fit a unique disease profile based on a model for a radioactive toxin.

Since starting its formal research grant program, the NCF has provided one million dollars in grant funding to pursue its own directed research to study ciguatera toxicology; a critical immune protein known as STAT-1; and myelodysplasia as well as myeloid leukemia — all of which have been identified in the patient subgroup.

http://www.prnewswire.com

The Scottish Good Practice Statement on ME-CFS (SGPS) was published on Wednesday September 1 on the Scottish Health Department’s website, Scottish Health On the Web as three downloadable documents.

http://www.meassociation.org.uk

CHARLOTTE, N.C., Aug 19, 2010 (GlobeNewswire via COMTEX) — Chelsea Therapeutics International, Ltd. /quotes/comstock/15*!chtp/quotes/nls/chtp  (CHTP  3.99, -0.08, -1.97%)  announced that a new investigator-led phase II clinical study of Droxidopa, an oral synthetic precursor of norepinephrine, has been initiated in chronic fatigue syndrome (CFS).

CFS is a complex and crippling disorder characterized by extreme fatigue that is not improved by rest. In addition to fatigue, patients with CFS experience symptoms, similar to that of fibromyalgia including, weakness, muscle pain, impaired memory and concentration. Droxidopa has been shown to improve symptoms of fatigue, weakness and concentration in neurogenic orthostatic hypotension associated with a variety of conditions including Parkinson’s disease, multiple system atrophy and pure autonomic failure. Droxidopa is also being studied in an ongoing Phase II trial in fibromyalgia where, during an interim analysis, an independent data monitoring committee saw meaningful efficacy in multiple treatment arms.

http://www.marketwatch.com

This is a new short documentary  film (in two parts) about Laura Fursland, a promising young music student who developed ME following an episode of glandular fever, with complications, at the age of 18.

http://www.meassociation.org.uk

XMRV NEWSBRIEF: Whittemore Peterson Institute (WPI) scientists, who were behind the first study linking the retrovirus XMRV to chronic fatigue syndrome, now say they’ll be publishing new findings by the end of the year.

In an interview with The Reno Gazette-Journal, Dr. Judy Mikovitz said her team can now tell what damage XMRV is doing to an immune system. “So we could have a diagnostic test to follow clinical treatment,” she said, “and show that people’s immune systems go back to normal. That’s the latest data that’s really amazing. That’s what we’re after.”

http://chronicfatigue.about.com/

On 4 August 2010 The ME Association and The Young ME Sufferers Trust (Tymes Trust) issued a joint statement that expressed a number of concerns about the proposal to carry out a feasibility study, involving children and adolescents with ME/CFS, into the use of the Lightning Process.

http://www.meassociation.org.uk

Is the science of diagnosing pain causing a number of pain sufferers to defend their honor? Research out of the University of Cincinnati is examining the diagnosis of pain that evades scientific testing, and the additional emotional suffering that can result for the patient.

http://www.physorg.com

The number of youngsters diagnosed with chronic fatigue syndrome in Cambridgeshire has almost doubled in five years, new figures reveal.

Ninety children between the age of 5 and 17 are currently receiving treatment and support for the debilitating illness compared to just 50 in 2004, when a special unit was set up to help young sufferers.

http://www.cambridge-news.co.uk

Former Olympian Roger Black now runs a successful motivational speaking and consultancy company from his base in Guildford, Surrey.

But looking back on his glittering career, it’s extraordinary to learn that right at its peak he suffered from a common and debilitating condition – the Epstein-Barr virus.

http://www.dailymail.co.uk

RESEARCH is proving the old saying “you are what you eat” to be true.

A FEW years ago, James Colquhoun’s father Roy was in a very bad place, physically and mentally.

Suffering from chronic fatigue syndrome, anxiety, depression and persistent flu-like symptoms, Roy Colquhoun was on a cocktail of prescription drugs, eating poorly and mostly couldn’t get out of bed.

So James, a Sunshine Coast filmmaker, decided to launch an intervention, virtually forcing his father to begin exercising, start eating mostly raw fruits and vegetables and take vitamin supplements.

http://www.news.com.au/

To the common person, a lot of noise can possibly cause a headache and irritability. When you have fibromyalgia and chronic fatigue syndrome, loud, repetitive, grating or otherwise annoying sounds can cause a whole host of symptoms.

http://chronicfatigue.about.com

The ME Association has issued the following commentary on the latest paper to be published on retroviral links with ME/CFS:

http://www.meassociation.org.uk

Having Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) can be a very isolating and lonely experience. ME/CFS Victoria is able to link people with ME/CFS into support groups that run throughout Victoria.

Support groups people with ME/CFS operate across metropolitan Melbourne and country Victoria. Some support groups offer an annual program of guest speakers for participants, while others have a more social focus.

http://www.healthnews.infoxchange.net.au

When you have fibromyalgia and chronic fatigue syndrome, pain can hit anywhere, at any intensity, for any length of time. Sometimes you can foresee that a certain thing will trigger a certain pain, but it’s largely unpredictable.

http://chronicfatigue.about.com

In response to the announcement that an independent review of the WCA (a key part of the Employment and Support Allowance) was to take place, The ME Association has prepared this submission.

http://www.meassociation.org.uk

The ME Association and WAMES (the Welsh Association for ME and CFS Support) will be teaming up at an ‘ME Question Time’ in Cardiff on Saturday, October 23.

http://www.meassociation.org.uk

YORKSHIRE batsman Joe Sayers is suffering from an illness that left him so tired he could barely walk up a flight of stairs.Sayers has been diagnosed with Post-Viral Fatigue Syndrome (PVFS) – a condition linked with Chronic Fatigue Syndrome (CFS) and ME.

http://www.meassociation.org.uk

Fatigue has today become a major part of everyone’s stressful life. Whether one suffers from a common cold, or a severe cancer, fatigue is accompanied with all kinds of physical and mental ailments. For instance, disorders like hepatitis, diabetes, heart disease, tuberculosis, thyroid problems, anemia, anxiety, and depression, have an unavoidable symptom of fatigue. Plus, it can also be seen as a side-effect of many drugs.

http://topnews.co.uk/

In this age of high-speed and high-stress lifestyles, fatigue is a common complaint. Fatigue is a symptom of everything from the common cold to cancer. It’s a symptom of hepatitis, diabetes, heart disease, tuberculosis, thyroid problems, anemia, anxiety, depression, and many others. And it could be a side effect of some of the medications used to treat these conditions.

http://www.mb.com.ph

One of the many things that’s blamed for symptoms of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS), especially pain and mood symptoms, is an over-excited brain. In studies, FMS and ME/CFS brain scans light up like crazy in the areas that deal with pain and emotion. It’s a bit ironic that those of us with the least energy are actually hyperactive in certain small areas.

http://chronicfatigue.about.com

It’s pretty common to see the “syndrome” left off of chronic fatigue syndrome  — it’s a long term, so that’s understandable — but it’s important to watch out for websites that intentionally use the confusion between “chronic fatigue” and “chronic fatigue syndrome” to take advantage of you.

Chronic fatigue, the symptom, is a really common thing.  Its causes include cancer, multiple sclerosis, just about any other disease, sleep disorders, high stress levels, shift work, a lumpy mattress or staying up too late on a regular basis.  These people may be tired all the time, but they don’t have the wide-ranging symptoms and dysfunctions of chronic fatigue syndrome. “I’m tired all the time” is one of the most common complaints doctors get, from sick and healthy patients alike.

http://chronicfatigue.about.com

We all know that carrots are good for our eyes, but they’ve got a lot more going on than that. Carrots can do a lot of the things those of us with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) need.

Carrots contain substances called carotenoids — in fact, they’re the single best source of them. Carotenoids fight cancer and reduce your risk of heart disease, and while this is controversial, some doctors believe ME/CFS increases your risk of both. It’s also worth noting that XMRV, the retrovirus tentatively linked to ME/CFS, may be tied to a particularly aggressive form of prostate cancer.

http://chronicfatigue.about.com

The American Association of Blood Banks  (AABB), an international, not-for-profit association representing individuals and institutions involved in the field of transfusion medicine and cellular therapies, is recommending that blood collectors discourage donors who have been diagnosed with chronic fatigue syndrome (CFS) from giving blood.

http://www.sleepreviewmag.com

A MAN was sacked from his factory job after he refused an eight-week back to work plan, an employment tribunal has heard.

William David Astbury, 52, of Connah’s Quay, is suing Flint-based Nice-Pak International for unfair dismissal and disability discrimination after he contracted chronic fatigue syndrome in April 2008.

http://www.leaderlive.co.uk