LIVING WITH ME

Playing music uses a tremendous amount of your brain.  It’s no wonder that brain fog from fibromyalgia and chronic fatigue syndrome can impair our ability to play.

http://chronicfatigue.about.com

Freezing in the morning, sweating in the afternoon — the current temperature change is playing havoc with my temperature sensitivity, which is a common symptom of fibromyalgia and chronic fatigue syndrome.

http://chronicfatigue.about.com

B.C. doctors are failing to comply with a requirement to report all cases of Lyme disease to public health authorities and are confused about diagnosing it, according to a report published in the current B.C. Medical Journal.

Humans can get Lyme disease if they are bitten by an infected tick. The blacklegged, sesame-seed-sized tick is found throughout southern B.C.

Two weeks of early treatment with antibiotics is essential to prevent potentially serious long-term disabilities such as arthritis, persistent pain, fatigue, neurological symptoms or even death.

http://www.vancouversun.com

ROCKVILLE, Md., May 9, 2011 /PRNewswire-USNewswire/ — The following is being released by MMG:

Arthur began experiencing nagging, unexplained pain when he was just 6 years old. Although he had been very active as a child, the constant pain that plagued him began to slow him down. After three years of visits to various doctors and a battery of tests, Arthur was finally diagnosed with fibromyalgia. Arthur’s mother had been recently diagnosed with fibromyalgia, leading the family physician to make the connection that Arthur had it as well.

Arthur’s diagnosis took so long because fibromyalgia is most commonly diagnosed in adults. However, fibromyalgia can develop in children and adolescents as well. Because many people are unaware that fibromyalgia can begin at a young age, teens, like Arthur, often go undiagnosed or untreated for this chronic pain condition. Misdiagnosis is common in children and adolescents because fibromyalgia can be confused with growing pains or chronic fatigue syndrome.

http://www.prnewswire.com/

Long-lasting, debilitating pain can result from everyday tasks or health conditions — and sometimes for no apparent reason. A specialist suggests chronic-pain help and how to manage pain’s fellow passenger, depression…

http://news.peacefmonline.com/

Kelley Mooneyham spends 90 percent of her life in her king-size bed.

At night, she sleeps on the side closer to the door. During the day, she lies on the opposite side, next to a large window that allows the afternoon sun to hit her face

http://www.rgj.com

(Ivanhoe Newswire) — Chronic fatigue syndrome (CFS) is characterized by unexplained and debilitating tiredness and is associated with headaches, disrupted sleep, muscle pain and difficulty in concentrating. New research shows that ethnicity, depression, lack of exercise or social support, and social difficulties are major risk factors for CFS.

http://www.redorbit.com

I know from bitter experience that ME, or chronic fatigue syndrome (CFS), is a difficult subject.

I did a TV programme to try to get to the bottom of it, and to find out what caused it. I couldn’t, and that upset a lot of people.

The situation is still the same – we don’t know what causes it, but we do know that it can be a debilitating condition.

http://www.mirror.co.uk/

The internet is a treasure trove for people living with a chronic illness. I have Chronic Fatigue Syndrome, and the internet has nourished me in ways I couldn’t have imagined.

http://www.empowher.com

As scientists race to find a biological cause for chronic fatigue syndrome, long considered by many doctors to exist in patients’ heads, the National Institutes of Health could shed new light on the debate at a major scientific workshop on the disorder.

http://online.wsj.com/

In early April, the National Institutes of Health yheld a scientific workshop on the still-mysterious chronic fatigue syndrome, attempting to suss out the potential biological causes of the disease.

As the WSJ’s Amy Dockser Marcus reports, researchers have been working to decipher CFS, also known as myalgic encephalomyelitis. Among the avenues they’re exploring: developing diagnostic tests based on proteins or other biological markers, studying other infectious diseases that seem to prompt CFS in certain patients and sussing out if the virus XMRV plays a role in the disease  — a controversial issue, as we’ve reported.

http://blogs.wsj.com

By now, many of you have heard news reports about the PACE study out of the U.K., suggesting that cognitive behavioral therapy and exercise are helpful for chronic fatigue syndrome, and misguided media reports suggesting that this shows that the illness is all in people’s minds.

Two other studies came out recently as well, which add perspective.

http://www.huffingtonpost.com

Patients Medical, a leading integrative medical center in New York City, is helping chronic fatigue sufferers to find low-cost, all-natural alternatives to pharmaceuticals. These alternatives have been shown to decrease fatigue symptoms and increase energy levels safely and effectively.

http://www.thestreet.com/

A new study shores up support for the theory of central sensitization in chronic fatigue syndrome (ME/CFS). It also connects specific types of migraines with sets of ME/CFS symptoms.

http://chronicfatigue.about.com

Globally recognized Stanford virologist Dr. Jose G Montoya* explains how we know ME/CFS is a REAL disease. He describes patient case examples, then cutting edge research by his team and other researchers that daily increases clues to the cause of ME/CFS and hope for its cure.

http://www.prohealth.com/

Despite previous evidence that both cognitive behavioral therapy (CBT) and graded exercise therapy (GET) can be effective treatments for chronic fatigue syndrome (CFS), some patients’ organizations have reported that these treatments can be harmful and instead prefer pacing and specialist medical care (SMC). The PACE trial, published Online First and in an upcoming Lancet, shows that while CBT and GET have positive effects on CFS when combined with SMC as compared to SMC alone, adaptive pacing therapy (APT) with SMC is no more effective than SMC alone.

http://www.sleepreviewmag.com

Scientists studying diseases should be motivated by patients, but not led by them.

In the furious debate over whether chronic fatigue syndrome is linked to a mysterious retrovirus called XMRV, scientists can at least agree on one thing: the whole thing is a mess.

http://www.nature.com

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

In 2009, a newly discovered human retrovirus, xenotropic murine leukemia virus (MuLV)-related virus (XMRV), was reported by Lombardi et al. in 67% of persons from the US with chronic fatigue syndrome (CFS) by PCR detection of gag sequences.

Although six subsequent studies have been negative for XMRV, CFS was defined more broadly using only the CDC or Oxford criteria and samples from the US were limited in geographic diversity, both potentially reducing the chances of identifying XMRV positive CFS cases. A seventh study recently found polytropic MuLV sequences, but not XMRV, in a high proportion of persons with CFS.

7thspace.com

Geraldine O’Sullivan-Hogan suffered agony every month for 28 years, says Joy Orpen, and she is convinced doctors would have treated her more seriously had she been a man.
Having a chronic condition is bad enough, but when the medical profession fails to take it seriously, then a grave injustice is done. This, it would seem, is quite common in an illness that is exclusively confined to women.

Endometriosis is intrinsically linked to the menstrual cycle. It occurs when the endometrium — the tissue which lines the uterus — grows elsewhere, usually within the pelvic region. It behaves in much the same way as the lining of the uterus does, thickening and then bleeding during the menstrual cycle in response to hormonal changes.

independent.ie

By Nina Sen
Mononucleosis – womancoldflu
Click to Enlarge

Mononucleosis may increase the risk of developing chronic fatigue syndrome in teenagers, according to a study.

Previous studies suggested that about one in ten adults with acute infectious mononucleosis go on to develop chronic fatigue syndrome, Dr. Ben Z. Katz, of Northwestern University Feinberg School of Medicine, Chicago, and colleagues write.

Katz and other researchers monitored more than 300 teenagers with the disease. About 13 percent of the original study developed chronic fatigue syndrome. At a 12-month follow-up visit, 7 percent had chronic fatigue syndrome, and at 24 months, chronic fatigue syndrome persisted in 4 percent.

thirdage.com

The silver statue was given pride of place on the mantelpiece and the inscription was read over and over again. Carlisle United Supporters’ Club Player of the Year 1988-89 – Nigel Saddington.

Saddington had a special place in the hearts of the Brunton Park faithful and they’d just given the Carlisle skipper the ultimate accolade as a reward for the best season of his career in which he’d clocked up his century of appearances for the club.

newsandstar.co.uk

by Elizabeth Smythe

A study by British scientists found that cognitive behavioural therapy (CBT) can help ease the symptoms of Myalgic Encephalomyelitis (ME), BBC News has reported.

The biggest ever study of ME – also known as chronic fatigue syndrome (CFS) – has found that sufferers can help alleviate their symptoms if treated with exercise, CBT, and generally encouraged to do more than they think they can.

The aim of the study was to treat the symptoms, not the cause – which remains unknown.

Read more: CBT can help chronic fatigue sydrome – Hypnotherapy News – The Therapy Lounge
Under Creative Commons License: Attribution.

thetherapylounge.com

The Daily Telegraph reported that “exercise and therapy can help ME sufferers”. Several other news sources reported on research which has shown that behavioural therapy and exercise can be effective in helping people with ME, also known as chronic fatigue syndrome (CFS).

This well-designed study used established methods and was rigorously conducted. The year-long trial randomly assigned 641 people with CFS to receive one of four treatments: specialised medical care, or specialised medical care in combination with cognitive behavioural therapy (CBT), graded exercise therapy, or what the researchers called adaptive pacing therapy (helping people adapt to their illness).

nhs.uk

By Amy Dockser Marcus

The debate over what XMRV may do to humans continues. But at least in a small group of monkeys, one thing is clear, according to a new study.

“The virus causes chronic, persistent infection,” says Robert Silverman of the Cleveland Clinic, a co-author of the paper, which was published online yesterday in the Journal of Virology. Moreover, the new research suggests that in these monkeys, at least, the virus can be difficult to detect in blood, even though it’s taken root in the body.

blogs.wsj.com

Moms Health Club’s theme for this year is “The Good Health And Wealth Of Ghana Starts With Me” this is a follow up to the theme for 2010 which was “Your Health, Your Responsibility – Take Control”. My goal is not to make readers experts in healthcare but to raise awareness and emphasize the point that we are all in a position to improve our health.

One will hardly complete a day’s work at the clinic without talking to a patient who complains of fatigue. The whole world appears to be in the “fast lane” and it is almost fashionable to complain of fatigue. Colette Bouchez refers to this whole fatigue syndrome as “a global energy crisis that has nothing to do with oil” and I totally agree with her. We all do experience fatigue once a while but when we know the likely cause(s) then we are in a position to make the right choices to correct this. Many of us may confuse fatigue with weakness and this may throw our diagnosis in a totally different direction. Always remember that the information we give our healthcare professional goes a long way to determine the conclusion he/she will draw.

businessghana.com

This is an interesting video clip from a BBC programme, which includes the medicinal use of cannabis for pain relief by someone who has ME.

http://www.meassociation.org.uk/?p=4756

Start with extreme exhaustion that doesn’t get better, even with a lot of rest. Add in muscle and joint pain, memory problems, headaches, sleep problems, sore throat and tender lymph nodes. People with Chronic Fatigue Syndrome (CFS) suffer from a complex and pervasive illness that can cause some or all of these symptoms.

Poorly understood by scientists and sufferers alike, CFS affects the brain and multiple body systems. According to the Centers for Disease Control, more than 1 million Americans have the disease. The cause of CFS, also called myalgic encephalomyelitis (ME) and chronic fatigue and immune dysfunction syndrome, remains a mystery. And without understanding a cause, it is nearly impossible to definitively diagnose or effectively treat.

Chronic Epstein Barr virus infection, Lyme disease, total allergy syndrome, multiple chemical sensitivity syndrome and bodywide yeast infection have been implicated as causative agents in the past, but research has not borne out those hypotheses. Research focusing on other infectious agents is promising but incomplete.

Researchers at Stanford University are among those looking for answers and finding some solutions.

losaltosonline.com

From PLoSone, the Public Library of Science open access journal, 23 February 2011. For weblinks to the cited references and access to the listed pdfs, read directly at the online journal.

http://www.meassociation.org.uk/?p=4737

The human brain is a complicated thing that often works against us, especially in neurological conditions like fibromyalgia and chronic fatigue syndrome.

One way it can cause problems for us is by associating memories with physiological and emotional reactions, then making us re-live those emotions when the memory is triggered. My brain did this to me recently when I walked into a particular grocery store. I know — grocery shopping is often a nightmare for us, but this reaction was particularly strong and took me by surprise.

about.com

From The Guardian, 22 February 2011 (report by Amelia Gentleman).

Welfare reform expert Professor Paul Gregg says a rushed roll out of the work capability assessment will cause more anguish

One of the architects of the new sickness benefit system has warned it would be a mistake to start introducing it nationwide from the end of this month because of serious ongoing problems with the medical test designed to assess whether claimants are genuinely sick or disabled.

http://www.meassociation.org.uk/?p=4720

When overworked young adults hear someone mention chronic fatigue syndrome, many will think they have it.

But while chronic fatigue is a common malady, chronic fatigue syndrome is of a different magnitude all together. Patients with chronic fatigue — which lasts more than six months and is not relieved by rest — will have only that, said Dr. Dennis Ang, a rheumatologist at Indiana University School of Medicine.

indystar.com

From Retrovirology, 22 February 2011.

Serologic and PCR testing of persons with chronic fatigue syndrome in the United States shows no association with xenotropic or polytropic murine leukemia virus-related viruses

http://www.meassociation.org.uk/?p=4717

by M Hamaguchi, et al.
February 9, 2011

This study seeks to estimate the prevalence of chronic fatigue syndrome (CFS) and assess the characteristics of CFS in a community population in Japan using laboratory tests and questionnaires for lifestyle, fatigue states, and depression states. The design of this study is a cross-sectional observational study.

The setting of this study is a medical health checkup program in a general hospital. This study was conducted with 1,430 Japanese (867 men and 563 women), 20 to 78 years of age.

prohealth.com

This appeared on The Guardian letters page, 24 February 2011.

ME – the truth about exercise and therapy

Reporting on the PACE trial of treatments for ME/CFS by Professor White and colleagues, Sarah Boseley (Report, 18 February) writes that patient groups “insist it is a physical disease, which probably has a viral cause”.

Research co-funded by The Young ME Sufferers Trust and published by Dundee University last year revealed abnormalities in children’s blood consistent with persistent viral infection. The trust deals with childhood cases so severe that sufferers cannot swallow and have to be tube-fed. Too weak to walk, they need to be carried and suffer unbearable neuropathic pain.

 http://www.meassociation.org.uk

TRIAL SHOWS THAT COGNITIVE BEHAVIOURAL THERAPY AND GRADED EXERCISE THERAPY ARE SAFE AND EFFECTIVE TREATMENTS FOR CHRONIC FATIGUE SYNDROME

Despite previous evidence that both cognitive behavioural therapy (CBT) and graded exercise therapy (GET) can be effective treatments for chronic fatigue syndrome (CFS), some patients’ organisations have reported that these treatments can be harmful and instead prefer pacing and specialist medical care (SMC). The PACE trial, published *Online First* and in an upcoming /Lancet/, shows that while CBT and GET have positive effects on CFS when combined with SMC as compared to SFC alone, adaptive pacing therapy (APT) with SMC is no more effective than SMC alone. The *Article*is by Profs Peter White (Barts and The London School of Medicine, UK), Trudie Chalder (King’s College London, UK), Michael Sharpe (University of Edinburgh, UK) and colleagues. The trial is funded by the UK Medical Research Council and various departments of UK governments.

http://www.meassociation.org.uk/?p=4621

University of Hull Professor of Psychology Rhona Johnston argues against the widespread belief that ME/chronic fatigue syndrome is a psychological condition – a misconception that’s “good for creating work for psychiatrists” but not good for people with this horrible illness who are blamed for it simply because it is not understood.

prohealth.com

Ian Swales, Lib Dem MP for Redcar, tabled a question about the accuracy of the WHO classification for ME/CFS which was contained in the reply given by Minister for Health Care Services Paul Burstow to his Private Member’s Debate in Westminster Hall on 2 February 2011.

Mr Swales asked the Secretary of State for Health pursuant to the Minister of State’s contribution on 4 February 2011 [sic], Official Report, column 327WH, on Myalgic Encephalomyelitis, what recent representations his Department has received on the definition of CFS/ME.

 http://www.meassociation.org.uk

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The medical community has been aware of fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) for decades, but we have incredibly few answers. What causes these illnesses? Why do they tend to run in families? What are the underlying mechanisms and how can we correct them? Are they communicable? How can we prevent them?

We don’t have definitive, widely accepted answers to a single one. We don’t have diagnostic tests, and ME/CFS doesn’t even have any FDA-approved drugs.

about.com

The Countess of Mar, who was at the meeting of the All Party Parliamentary Group on ME at Westminster yesterday, has taken two important parliamentary initiatives in the House of Lords in relation to issues that were discussed at the meeting.

http://www.meassociation.org.uk/?p=4592

Musical star MICHAEL CRAWFORD has told how he overcame chronic fatigue syndrome to make his comeback in ANDREW LLOYD WEBBER’s WIZARD OF OZ revamp.

The British singer/actor returned to London’s West End in the new production on Monday (07Feb11) after five years away from the spotlight battling myalgic encephalopathy (ME).

contactmusic.com

From The Press, York, 14 February 2011 (story by Richard Catton in his weekly column looking at health and wellbeing issues).

UNLESS you are made of steel, it is likely that at some time in your life you have been struck down by a bad case of cold or flu or perhaps a viral infection.

Thankfully, for the majority of us, we are over the symptoms within a week or two, whether it’s with the help of drugs or by letting the illness run its course.

But what if the symptoms don’t go away; imagine if the symptoms went on for months or even years; you can’t sleep and every time you attempt to do the simplest tasks, you are left physically and mentally exhausted.

 http://www.meassociation.org.uk

The PACE Trials have recently been published and demonstrate clearly what is wrong with the present way that vested interests have manipulated the establishment view about myalgic encephalomyelitis (ME/CFS) and forced tens of thousands of patients and their families to live in a continual state where no proper research is sanctioned, good science is denied and where pointless and biased studies are funded by a system which denies human rights.

investinme.org

One of the most common complaints I hear from people with fibromyalgia and chronic fatigue syndrome,especially this time of year, is how awful cold weather can be.  The cold seems to get into our bones and make everything tighten up and ache.  The cold can make our skin hurt, and when we get chilled it can be ridiculously hard to warm back up.

chronicfatigue.about.com

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the Medical Research Council (MRC), lambasting it for wasting funds and for introducing misguided strategies for its research. 

The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. 

The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

investinme.org

This notice was issued by the UK Department for Transport, 14 February 2011

Blue Badge Reform

The Government has today made an announcement on the most significant reform to the Blue Badge scheme in forty years.

http://www.meassociation.org.uk/?p=4547

For a long time Invest in ME have been critical of the workings, decisions and policies of the Medical Research Council.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more appropriate than in relation to the PACE Trial.

investinme.org

When you’re talking about Chronic Fatigue Syndrome, the word “progress” is not often spelled with a capital “P”. That’s because any progress is excruciatingly slow.

empowher.com

DWP press release: Fitness for work assessment continues to be improved.

This new information from the DWP is particularly important for people with ME/CFS who are currently receiving Incapacity Benefit (ICB) and are going to be re-assessed for Employment and Support Allowance (ESA) eligibility this year.

Despite the reassuring statement from the DWP, some of the changes to the Working Capability Descriptors in the Statutory Instrument (= seconday legislation) will probably make it even more difficult for people with ME/CFS to successfully claim ESA.

 http://www.meassociation.org.uk

No one could tell Karen LeVier why she was not shaking the flu. Not only did her throat feel sore and her sinuses infected, she had such overwhelming fatigue she could not shower. The malaise continued for a year and a half, during which LeVier, a once healthy woman in her 30s, stopped working and sold her house.

No one could pin down a diagnosis, and over the next eight years, LeVier stumbled through months when she could make it through the day but not have enough energy to cook dinner.

indystar.com

The MRC has recently announced its intention to allocate £1.5 million for ME research

investinme.org

From The Independent, 18 February 2011 (story by health editor Jeremy Laurance).

Got ME? Just get out and exercise, say scientists

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 yesterday, saying they were “surprised and disappointed” by the “simplistic” results.

 http://www.meassociation.org.uk

On Monday,  Belgian endocrinologist Francis Coucke appeared before the ‘Orde van Geneesheren’, a national body responsible for enforcing standards within the medical profession. Dr Coucke risks a two year suspension from the profession because his treatment (gamma globulines and home TPN) of patients with the chronic fatigue syndrome (CFS) has been deemed non-scientific: it has not been proven to work in large studies. Last year, he and a neuropsychiatrist colleague were required to pay a 635,000 euro fine for prescribing medicines not licensed for CFS to CFS patients. The fine was imposed even though special authorization for the prescriptions had been granted by the medical advisor to the national healthcare service.

CFS is a controversial condition. Internationally accepted criteria for CFS are: chronic, disabling fatigue for six months or more, where the fatigue is not the result of excessive ongoing activity, is unresponsive to rest, is associated with other symptoms (such as sleep changes, poor concentration, muscle and joint pains) and is not caused by any detectable underlying medical or severe psychiatric condition.[1] There is, however, little agreement about the nature of CFS, its etiology, or even its existence. One rather widely accepted view is that it is caused through stress but can be triggered by an infection, a difficult delivery, or a whiplash. Others, like Dr. Coucke, think it has physical causes, most of which could be addressed if looked for and found. But many think it is a purely psychosomatic condition. In a recent Belgian newspaper article about the Dr Coucke case, a Belgian internist from the University of Leuven calls doctors who think CFS has physical causes ‘quacks’.

blog.practicalethics.ox.ac.uk

At the 5th Invest in ME International ME/CFS Conference in London in May Invest in ME announced that we had entered into discussions with the University of East Anglia to instigate a research facility for ME.

Discussions have continued since the conference and we have decided to publicise our attempt to set up this facility.

investinme.org

No Xenotropic Murine Leukemia Virus–related Virus Detected in Fibromyalgia Patients

Joanna Luczkowiak, Olalla Sierra, Jorge Juan González-Martín, Gabriel Herrero-Beaumont, and Rafael Delgado

http://www.meassociation.org.uk/?p=4510

Laura Hillenbrand, the best-selling author of “Seabiscuit: An American Legend,” is known for her exuberant storytelling and dynamic characters. Her newest book, “Unbroken: A World War II Story of Survival, Resilience and Redemption,” is a riveting tale of the life of an athlete and war hero, Louis Zamperini.
Laure HillenbrandWashington Post/Getty Images Laura Hillenbrand

Ms. Hillenbrand’s ability to transport her readers to another time and place is all the more remarkable in light of the fact that she is largely homebound, debilitated by chronic fatigue syndrome, or C.F.S.

nytimes.com

The journal Retrovirology has recently published (20 Dec 2010) results from four different groups (Hue et al., Sato et al., Oakes et al. and Robinson et al.) [1] which dispute the association of XMRV with ME/CFS or prostate cancer and suggest evidence of possible mouse contamination of PCR evidence. Hue et al. go as far as to say that XMRV might not be a genuine human pathogen.
investinme.org

MORE than 54,000 children are suffering with the debilitating condition ME.

One in 100 under-18s, including infants and toddlers, are affected by the problem, which causes chronic fatigue, a study by specialists at Bristol University reveals.

Separate research shows the condition is the biggest medical cause of long-term school absence. Researcher Dr Esther Crawley said: “Until recently we have not known the scale of the problem. There are areas of the country where parents are desperate to get treatment yet their primary care trust refuses to fund it.”

 http://www.meassociation.org.uk

Do you have trouble recognizing people’s faces?  It wasn’t a problem I’d ever heard about in connection with fibromyalgia and chronic fatigue syndrome, but when a reader left a comment about it I had an “ah-ha” moment.

About.com

This will be the sixth annual Invest in ME international biomedical conference on ME/CFS.

The conference will be held on 20th May 2011 in Westminster, London and builds on the successful biomedical research conferences organised by Invest in ME in previous years.

As in previous years Invest in ME aim to raise awareness of the neurological illness myalgic encephalomyelitis (ME/CFS). This conference will highlight the need for a national strategy for biomedical research which will lead to treatment and a cure for this devastating illness – an illness which is 5 times more common in the UK than HIV/AIDS – yet which has had comparatively little funding spent on biomedical research.

http://www.investinme.org/IiME%20Conference%202011/IiME%202011%20International%20ME%20Conference.htm

Following publication of Professor Malcolm Harrington’s review of the Working Capability Assessment (WCA) in November 2010, Chris Grayling, Minister for Employment, asked Professor Harrington to assess the two groups of WCA descriptors that currently relate to (a) mental, intellectual and cognitive functioning and (b) fluctuating conditions such as ME/CFS.

 http://www.meassociation.org.uk/

The memory and concentration problems frequently known as “fibro fog” or “brain fog” are common in fibromyalgia and chronic fatigue syndrome, and new research shows that they’re also common in people with chronic spinal pain.

In the study, more than 17% of participants with pain said they had trouble with concentration, while just over 20% said they had problems remembering information. They did worse than healthy people in tests gauging memory, attention, mental flexibility and dealing with numbers and letters.

About.com

The first Government programme to reassess people on incapacity benefit showed that a “substantial number” of claimants have the potential to return to work, ministers have announced.

Provisional figures of 1,347 reassessments in Burnley and Aberdeen showed that 399 (29.6%) were found to be fit for work, 422 (31.3%) will receive unconditional support and 526 (39%) could look for work “with the right help and support”.

 http://www.meassociation.org.uk

In 2001, I had the next couple of decades of my life mapped out. I’d be teaching law, visiting my children, and attending Buddhist meditation retreats.

Suddenly, everything changed. I got sick with flu-like symptoms. A doctor said it appeared to be an acute viral infection.

I have yet to recover. The infection has left me mostly house-bound and often bed-bound.

For the first few years of being sick, I lived in what I can only describe as a state of shock. I couldn’t believe I wasn’t getting better. When I didn’t recover, I blamed myself. I fell into alternating states of anger, denial and despair.

http://www.npr.org/2011/01/31/132675079/learning-to-live-a-full-life-with-chronic-illness

The Department for Work and Pensions have just announced that they are extending their consultation on changes to the Disability Living Allowance (DLA) from 14 February  to 18 February.

No reason has been given for the extension but it may be related to reported crashes at the relevant DWP website or Government may just be listening to the views of people who have not yet managed to complete the questionnaire.

 http://www.meassociation.org.uk

Action for M.E. CEO, Sir Peter Spencer, has appeared live on lunchtime TV to discuss recent clarifications in the law on assisted suicide.
The BBC South East Today programme was aired after Director of Public Prosecutions, Keir Starmer, issued new guidelines on whether people should face prosecution for helping a person to commit suicide.

 http://www.afme.org.uk

From Public Service Review: Central Government, Issue No 21, 6 January 2011 (article by Rhona Johnston, professor of psychology, University of Hull).

University of Hull Professor of Psychology Rhona Johnston argues against the widespread belief that ME/chronic fatigue is a psychological condition…

 http://www.meassociation.org.uk

Consultation results on Pathways

Following a workshop in January, the Department for Work and Pensions (DWP) asked Action for M.E. and others who had participated for ideas about how their Pathways to Work scheme could be improved. Action for M.E. consulted people with M.E. for their views and experiences and have sent their response to the DWP today.

 http://www.afme.org.uk

Analysis of cerebrospinal fluid in chronic fatigue patients for multiple ubiquitous viruses and XMRV

 http://www.meassociation.org.uk

All three main political parties have answered calls by Action for M.E. and the Association of Young People with M.E. (AYME) to outline their election pledges for people with M.E.
Responses to our Election manifesto for M.E. have now been received from Labour, the Conservatives and Liberal Democrats.

http://www.afme.org.uk/news.asp?newsid=757

This afternoon, we received a further letter from the NHS National Research Ethics Service about the pilot study which aims to compare the Lightning Process with specialist medical care for children with ME/CFS. It contains an apology to Mr Phil Parker for any embarrassment or difficulties caused by previous publication of inaccurate information about his business.

 http://www.meassociation.org.uk