LIVING WITH ME

Robert Miller was working as a coal miner in Utah in 1982 when he got the flu and “it didn’t go away.” Diagnosed with chronic fatigue syndrome in 1994, he has been living ever since with symptoms that include constant pain, an inability to concentrate and exhaustion so severe, he can’t lift his arms.

Worse than his condition, Mr. Miller says, has been the humiliation and ostracism he’s suffered from the scientific establishment, which he accuses of ignoring or downplaying the existence of the disease for the past 25 years.

http://online.wsj.com

RICHLAND — High-tech protein analysis done in Richland could lead to improvements in diagnosis and treatment of the little-understood chronic fatigue syndrome.

The analysis done at the Environmental Molecular Sciences Laboratory on the campus of Pacific Northwest National Laboratory identified a subset of proteins in the spinal fluid of patients with chronic fatigue syndrome that are not present in healthy patients.

The discovery also calls into question the belief of some scientists that chronic fatigue syndrome, with its debilitating fatigue, is an umbrella category that includes other diseases, including Lyme disease, that lingers after treatment.

http://www.tri-cityherald.com

A new finding presented at a conference last week throws cold water on the impassioned debate about the link between a novel mouse retrovirus and prostate cancer and chronic fatigue syndrome in humans. Yet few believe it will end the controversy, which began in 2006. In an extensive sleuthing expedition that looked back nearly 20 years, two collaborating research teams contend that they have evidence that xenotropic murine leukemia virus–related virus (XMRV) resulted from the chance recombination of pieces of two mouse viruses in lab experiments and that the connections to human disease are spurious. But even if XMRV is not a threat to human health, the fact that a retrovirus that can readily infect human cells was apparently generated by chance in the lab raises some interesting and potentially troubling issues.

http://www.sciencemag.org

You may be wondering why I haven’t said anything before now about the “big study” on graded exercise therapy and chronic fatigue syndrome.  It’s captured a lot of headlines and created quite a stir.  The reason I haven’t mentioned it is simple: in my opinion, it’s not much of a study.

First, the 600+ participants were chosen based on the Oxford criteria, which is typical of research in the U.K.  For those of you who don’t know what that means, here’s the briefest possible explanation

http://chronicfatigue.about.com

Chronic Fatigue Syndrome aces all the definitions of an invisible illness. Symptoms not readily recognized by the casual observer?

http://www.empowher.com

In 1990, after a bout with mononucleosis, I contracted chronic fatigue syndrome. For month after month, I felt as if I had the worst case of the flu, and I had little stamina to do even the most basic life activities. I had to leave my work as a psychology professor for a year and a half.

I was lucky to have a strong support system and an understanding work setting—something many other patients don’t have—but I discovered just how mysterious and frustrating the illness is. I also realized how easy it is for people to confuse the experience of everyday tiredness with the incapacitating illness known as CFS.

http://online.wsj.com/

Headaches are more frequent in Chronic Fatigue Syndrome (CFS) than healthy control (HC) subjects. The 2004 International Headache Society (IHS) criteria were used to define CFS headache types.

http://7thspace.com/

Chronic fatigue syndrome (CFS) can make even the simplest daily activities — such as taking a shower or getting dressed — completely exhausting, the womenshealth.gov website says.

http://www.thenews.com.pk

When reports emerged 30 years ago that young gay men were suffering from rare forms of pneumonia and cancer, public health investigators scrambled to understand what appeared to be a deadly immune disorder: What were the symptoms? Who was most susceptible? What kinds of infections were markers of the disease?

http://www.nytimes.com/

[Note: This is a preview abstract in advance of publication, posted Mar 1 by ME/CFS Australia (http://sacfs.asn.au). Ability to review the article, which appears to provide important evidence that ME/CFS is a neurological disorder, may flesh out our understanding. Dr. Kwiatek's call for study volunteers back in April 2010 is posted HERE.]

To explore brain involvement in chronic fatigue syndrome (CFS), we have extended statistical parametric mapping of brain magnetic resonance (MR) images to whole-brain voxel-based regressions against clinical scores. Using SPM5 we performed voxel-based morphometry (VBM) and analysed T1- and T2-weighted spin-echo MR signal levels in 25 CFS subjects and 25 normal controls (NC).

http://www.prohealth.com

Patients struggling with chronic fatigue syndrome may be helped the most when standard treatment is coupled with cognitive behaviour therapy or exercise therapy.

It is not yet understood what gives rise to chronic fatigue syndrome (CFS), a complex condition characterised by profound tiredness, impaired concentration, diminished memory, sleep difficulties and muscle and joint pain. The cognitive behavioural therapy targets the building fear and avoidance of activity that can exacerbate CFS. In effect, it seeks to break a vicious cycle in which mental inhibitions actually perpetuate and aggravate the underlying chronic fatigue. Exercise therapy, also known as gradual exercise therapy (GET), tries to reduce fatigue and disability by gradually helping patients increase their activity levels to improve their overall physical fitness.

http://doctor.ndtv.com/

It’s hard to know what causes more suffering for Theda Myint – the excruciating migraines caused by her decade-long battle with a crippling illness, or the fact that a simple method that can ease her pain is being denied by authorities.

Largely bedridden for the past 10 years due to the effects of myalgic encephalomyelitis, or ME – better known as chronic fatigue syndrome – Ms Myint and her family have battled the medical establishment, bureaucrats and politicians firstly to get her condition recognised, then to try to get treatment.

http://www.watoday.com.au/

The University of Medicine and Dentistry of New Jersey (UMDNJ) collaborated with the Pacific Northwest National Laboratory (PNNL) to discover around 3,000 proteins in the spinal fluids of people who suffer from chronic fatigue syndrome and Lyme disease.

“We discovered that both diseases — chronic fatigue syndrome and post-treatment neurological Lyme disease — are central nervous system disorders,” said Steven Schutzer, professor of medicine at UMDNJ. “They have their own characteristic set of spinal fluid proteins that lets us distinguish one from the other.”

http://www.dailytargum.com/

“Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds,” read the headline in the February 17, 2011 edition of The New York Times. Within a few days Chronic Fatigue Syndrome (CFS) ranked third on Yahoo’s ‘Trending Now’ list. For the misinformed reader it’s likely these headlines translated that CFS is all in your head.

Until now, I’ve told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I’m actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.

http://www.huffingtonpost.com

Nearly all of us have heard it — “I can’t believe you’re that sick when you look just fine.”  Ignorant, dismissive attitudes like that can haunt people with invisible, poorly understood illnesses like fibromyalgia and chronic fatigue syndrome.

http://chronicfatigue.about.com/

A woman who used an alternative technique to cure her chronic fatigue syndrome has launched her own therapy business.

Louise Fennel, 37, began suffering with the symptoms of fatigue when she was a teenager, and said she tried everything to cure her illness but nothing worked until she discovered Journey Therapy.

http://www.cravenherald.co.uk/

Working with a chronic illness like fibromyalgia and chronic fatigue syndrome is hard enough, but it’s especially rough when you’re treated badly because of your illness.

Calling in sick, missing time for doctor’s appointments, and possibly not being able to perform up to expectations puts pressure on us as well as on our employers and co-workers. When I was working full time, everyone tried to be understanding. However, by the time I left, about a year after becoming really sick, I know few people were sorry to see me go. They’d gone from supportive and caring to weary from dealing with the constant instability.

http://chronicfatigue.about.com/

There have been some outrageous headlines in the media recently, following publication in the Lancet of a five-year, £4.2 million study which compared different therapies for ME (your report, 18 February).
Let’s be very clear on this: exercise and talking therapy cannot cure ME. The Pace trial does not say it can. What the study says is that some people who have fatigue as their primary symptom may gain moderate improvements in their physical functioning if they receive a cognitive behaviour or graded exercise programme in a specialist chronic fatigue syndrome/ME clinic.

Now, can the UK research community please start focusing on the biology of this illness?

Sir Peter Spencer

Action for ME
Victoria Street
Bristol

http://news.scotsman.com/

There is light at the end of the tunnel for Lyme disease sufferers according to a recent report release on the strength of a study “Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome” led by Dr. Steven E. Schutzer of the University of Medicine and Dentistry of New Jersey-New Jersey Medical School, and Dr. Thomas Angel, Dr. Tao Liu, and Dr. Richard D. Smith of the Pacific Northwest National Laboratory.

http://www.thinking-clearly.com

Strong evidence suggests that the central nervous system is involved in both conditions.

An analysis of proteins in spinal fluid can help distinguish patients with Lyme disease from those with chronic fatigue syndrome, a new study reports.

It also appears that both diseases, which can cause similar symptoms, involve the central nervous system and that protein abnormalities in the central nervous system are causes and/or effects of both conditions, said the research team, which was led by Dr. Steven E. Schutzer, of the University of Medicine and Dentistry of New Jersey—New Jersey Medical School, and Richard D. Smith, of Pacific Northwest National Laboratory.

http://www.hispanicallyspeakingnews.com/

Neurologic post-treatment Lyme disease and chronic fatigue syndrome can be differentiated by group-specific and individual cerebrospinal fluid protein complements, according to a study published online Feb. 23 in PLoS ONE.

http://www.doctorslounge.com/

ANYONE whose family has been affected by ME (Myalgic Encephalomyelitis) or chronic fatigue syndrome will not be surprised to read in the Lancet and other national media that current treatments have been found to be, at best, only moderately effective. But they will be stunned to discover that graded exercise, the therapy which patients tell us has a greater risk of causing them harm, has been rated more effective than pacing, the therapy which patients say carries least risk and does most good!

http://www.andoveradvertiser.co.uk

The protein “fingerprint” of the spinal fluids of people with Chronic Fatigue Syndrome (CFS) is distinct to that of people with Neurologic Post Treatment Lyme disease (nPTLS), and both fingerprints are also distinct to that of healthy people, according to a new study published in the journal PLoS ONE this week.

http://www.medicalnewstoday.com

Dr. Charles Raison, CNNHealth’s Mental Health expert and an associate professor of psychiatry and behavioral sciences at Emory University, writes regularly on the mind-body connection for better health.

Every Wednesday afternoon for the last 10 years I’ve slung a government ID badge around my neck and walked up to the Centers for Disease Control and Prevention, where I set aside my identity as a psychiatrist who studies meditation and take on the role of guest researcher in a group of scientists charged by Congress with studying chronic fatigue syndrome, or CFS.

http://thechart.blogs.cnn.com

The UK’s largest study of treatments for chronic fatigue syndrome has provided the first definitive evidence of what helps those who suffer from the disabling condition that affects 250,000 people in the UK.

The best therapies are those which help patients test the limits of their capacity, such as by gradually increasing the amount of exercise they take, the research shows. Therapy aimed at helping patients live within the limits of their capacity, by balancing rest and activity, is much less effective.

But patients’ support groups angrily rejected the findings, saying they were “surprised and disappointed” by the “simplistic” results.

http://www.iol.co.za/

The WSJ’s Amy Dockser Marcus has been covering chronic fatigue syndrome and its associated controversies — including whether the syndrome is associated with a retrovirus called XMRV — for a while now.

Her latest story for the WSJ took her to Lyndonville, a small farming town in upstate New York. Some 26 years ago, children fell ill after taking a sledding excursion together. The story chronicles what happened to those kids, and to research into the possible causes of chronic fatigue syndrome, which is what the children were eventually diagnosed with.

http://blogs.wsj.com/

Too many of us awaken in the morning time and still feel tired. You do not have to continue awakening like this. Start your day off properly with a healthy shot of breakfast.

Breakfast is the most crucial meal of the day. After all, you’ve been slumbering for several hours. You ate dinner a few hours before bedtime. That’s about 10 hours without food. Your body demands some fuel to get rolling for the coming day’s activities.

http://www.opposingviews.com

Last week, we told the heartbreaking story of how  KAY GILDERDALE was arrested for helping her daughter end her life after 17 years living with ME — chronic fatigue syndrome. Here, in a moving account from her new book, she describes her ordeal in court . . . and its dramatic conclusion

http://www.dailymail.co.uk/

FOR Cheltenham woman Gabrielle Thomas, being alive to enjoy this Easter is a miracle in itself.

The 37-year-old came close to death after battling against chronic fatigue syndrome ME for more than a decade.

Formerly a lively and energetic young woman, she was reduced to a skeleton of her former self – her weight dropping to just five-and-a-half stone – when the illness reached a critical stage.

http://www.thisisgloucestershire.co.uk/

An article published online Apr 18 by Pediatrics (“Adolescent Chronic Fatigue Syndrome: Prevalence, Incidence, and Morbidity,” by Dr. Sanne L Nijhof, et al.) reports on a survey of pediatricians and general practitioners to scope out the diagnosis and prevalence of adolescent CFS (ME/CFS) in the Netherlands.

While the resulting statistics have their limitations, the insights gained are valuable.

Pro Health