Selected Recent News (CFS, MCS, FM, ME, POTS, NMH, MVPS, OI, IBS, Lyme, sleep, etc)

• Hidden Sensory System Discovered in the Skin Science Daily -  12-14-09
  The answer appeared to be in the presence of sensory nerve endings on the small blood vessels and sweat glands embedded in the skin. "For many years, my colleagues and I have detected different types of nerve endings on tiny blood vessels and sweat glands, which we assumed were simply regulating blood flow and sweating. We didn't think they could contribute to conscious sensation. However, while all the other sensory endings were missing in this unusual skin, the blood vessels and sweat glands still had the normal types of nerve endings. Apparently, these unique individuals are able to 'feel things' through these remaining nerve endings," said Dr. Rice. "What we learned from these unusual individuals is that there's another level of sensory feedback that can give us conscious tactile information. Problems with these nerve endings may contribute to mysterious pain conditions such as migraine headaches and fibromyalgia, the sources of which are still unknown, making them very difficult to treat." 
  
• Discovery sheds light on a medical mystery  The Daily News Online -  12-12-09
  Twenty-five years ago, more than 200 people in rural Western New York came down with a mysterious
  ailment with symptoms such as achy joints, muscle weakness, digestive upset, insomnia, clouded
  thinking and exhaustion.The practice of Dr. David S. Bell of Lyndonville was inundated with patients who were all ill in the same way. "Just a lot of my patients came in with mono that didn't get better," he said.   ... [XMRV's discovery]'s one of the main reasons Bell is trying to find all 61 of his former patients.
• CFS - Dr Oz Tv Show You Tube -  12-3-09
• Problems With Time & Math in Fibromyalgia & Chronic Fatigue Syndrome About.com Fibromyalgia & CFS Blog -  11-24-09
  Dyscalculia not only impairs math and number abilities (forgetting concepts, transposing numbers), it also involves:
  • Difficulties with time: inability to remember schedules, keep track of time, or remember a sequence of events.
  • Spacial problems: impaired direction sense and memory of how things are laid out, leading to frequently getting lost or becoming disoriented.
  • Difficulty sight-reading music or learning instrument fingerings.
  • Bad memory for names.
  When I read those things, a light went on. It's incredibly common for us to get lost, or forget how to get where we're going. Who among us hasn't lost their car in a parking lot? I used to have a pretty good ability to sight-read and learn new music, but now I really struggle with it.
• Expert Answers on Chronic Fatigue Syndrome NY Times -  11-24-09
• Chronic Fatigue Patients fight 'Lazy' Label, support awareness San Diego News Network -  11-14-09
  “People laugh and say, ‘Yeah, I’m tired, too,’” said Deering, who has learned to be discreet about revealing his illness. “I think people who don’t have experience with chronic illness or invisible illness don’t really get it,” Gordon said. Even a simple task like running errands warrants comments and looks from those who happen to notice her handicap parking permit as she walks into a store, she said. “I may not be tired going into the store, but when I come out carrying groceries, I will be,” she explained. It even took some time for her own family to believe the diagnosis. “I went from having a job to being on disability. Why would someone like me want to live like this?” While silently hoping for remission, to wake up refreshed and able again, Deering said that until there is a cure, he plans to keep his nose above water. “You give up an awful lot when you lose your energy,” he said. “But it could be a lot worse. Count your blessings when you do feel better.”
• Sufferers of chronic fatigue see life as a balancing act PennLive.com -  11-8-09
  “Life for us is different. We have to constantly balance what we can do, and people don’t understand that. That’s why a lot of relationships and friendships break up,” said Krause, 58, who suffered from the disorder for at least 15 years before receiving a diagnosis. .... Krause, who began having symptoms in her 20s, has suffered from skin rashes, breathing trouble, sinus problems, chemical sensitivity, migraines, sore throats, eye focus problems, arthritic pain and crushing fatigue. She also has fibromyalgia, a similar condition that some experts think is another variant of CFS. Generally, CFS patients experience severe fatigue, while fibromyalgia patients experience more pain.... . Join the CFIDS Support Group of Lebanon County by calling Janet Krause at (717) 273-9036. The group meets the second Thursday of every month from 3 to 5 p.m. at Philhaven, 283 S. Butler Road in Mount Gretna. South-central PA.
• Stained-glass artist sees new life for church The Wausau Daily Herald -  11-6-09
  97-year-old building to be transformed into gallery.
  Chambers suffers from fibromyalgia, a chronic muscle condition that causes him constant pain and fatigue. As a result, he's only able to work about four hours a day on the church, which will make the renovation -- which he is doing mostly on his own -- a labor of love. He's hoping that the artists he brings in and teaches will someday take over the business, because he's concerned his condition will get worse. "This is my last hurrah," he said.
• Painful sex: A common female health problem ABCNews7 San Fransisco -  11-4-09
  Pain with sex is a major health problem for women. The incidence is about 8 percent (anywhere between 3 percent and 15 percent depending on the study). This about the same incidence of asthma, so it is a common problem. It affects sexual fulfilment, can contribute to relationship issues, and affect a woman's self-esteem. Painful sex? What you should know if it hurts, and how to fire your doctor if he says, "it's all in your head."
• CFSAC Meeting Day 2 Video CFSAC -  10-30-09
  Includes more committee discussion, more Patient Testimon
• CFSAC Meeting Day 1 Video CFSAC -  10-29-09
  Includes Dr. Peterson on XMRV, Dr. Bell on some problems for children and families with school districts about CFS, Patient Testimony including a CFSupport member
• David Bell, MD, on XMRV - "Now We Can Get Down to Business"ProHealth - 10-21-09
• A Case of Chronic Denial The New York Times Op Ed - Hillary Johnson -  10-20-09
• Interview with Laura Hillenbrand The New Yorker -  10-15-09
• Behavioral Treatments for Chronic Fatigue Syndrome The New York Times -  10-14-09
  Questioning the mind-body view of chronic fatigue syndrome and EMDR. Dr. Friedberg’s response.
  
• Cancer-Causing Virus Linked to Chronic Fatigue Wall Street Journal -  10-12-09
  Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications. An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, and the Centers for Disease Control and Prevention puts the U.S. figure at between one million and four million. CFS is characterized by debilitating fatigue and chronic pain, but there are no specific treatments, and the diagnosis is often made by ruling out other diseases. Thus there is disagreement in the medical community as to whether CFS ...
• The Mystery of Chronic Fatigue Syndrome A New York Times Blog -  10-9-09
  This week, Fred Friedberg, assistant professor at Stony Brook University Hospital in New York, joins the Consults blog to answer readers’ questions about chronic fatigue syndrome, or CFS.
• The Virus That Links Prostate Cancer & Chronic Fatigue Syndrome Wall Street Journal Health Blog -  10-8-09
• Virus Linked To Chronic Fatigue Syndrome NPR, All Things Considered -  10-8-09
• Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome Cancer.gov -  10-8-09
• Chronic fatigue syndrome linked to 'cancer virus'  New Scientist -  10-8-09
• Study isolates virus in chronic fatigue sufferers  Reuters -  10-8-09
• Drug Found to Reduce Severity of Mono Baltimore Sun -  10-2-09
  
• Balanced performance Sheffield Telegraph -  10-1-09
  UNICYCLIST Alistair Farr cracked a major challenge on Sunday by completing an egg-and-spoon ride from Endcliffe Park to Forge Dam Café, raising more than £1,000 to help people with chronic fatigue syndrome.
• Women MayAdapt to Pain Faster Than Men ABC News - Reuters - ‎Sep 30, 2009‎
  
• Fibromyalgia - I've Learned to Live Each Day One at a Time Blog / Shelbyville TN Times-Gazette -  9-23-09
  I hope that by sharing my story someone out there will feel a little less alone and a little less afraid. Remember, just put one foot in front of the other, one day at a time.
• Alternative Therapies for Fibromyalgia NY Times -  9-23-09
  ... One exciting area of research in the past decade has been in the realm of complementary and alternative medicine, or CAM, treatments for fibromyalgia. These range from well recognized therapies like acupuncture and massage to more novel treatments like d-ribose and qi-gong. As this research grows, it is increasingly possible to identify CAM therapies that have some evidence of efficacy and minimal risk that can be incorporated right along with the more conventional treatment recommendations. This blending of the best of evidence-based alternative medicine with the best of conventional medicine is typically referred to as “integrative medicine” – since it is an integration of both for the benefit of the individual patient. In fibromyalgia, this might mean taking your prescribed medication while adding in a massage once a week or pursuing a gentle, graded exercise program while you also receive acupuncture treatments. By working with your care team, you may be able to find a new combination of approaches that fit your lifestyle while addressing your unique needs. ...
• Artist reaches for the stars with new book West Island Chronicle -  9-23-09
  Despite formidable odds, artist and author Sonya Kleinsteuber is struggling to overcome a series of daunting physical challenges in her young life. [Her] career as an academic was destroyed by health problems while she was still doing graduate studies, and when she was in her early 30s she was incapacitated by a major stroke, followed by three comas. “I also suffer from a lot of rare illnesses, for which there are no cure, such as Chronic Pain Syndrome and fibromyalgia. It’s been a hard journey,” she said. Unable to continue on her chosen path, she turned to art and literature. “Painting and writing give me joy. They help me forget my pain and disability, and give me courage to go on,” said Kleinsteuber, ...  Her faith has also helped her to survive, she reflected. ...“I paint from my memories of the European countryside, and the beauty of the Canadian wilderness, " ...
• Chronic Fatigue Syndrome: Cardiovascular System and Orthostatic Intolerance empoweHer -  9-22-09
  Most people with Chronic Fatigue Syndrome experience irregularities in their cardiovascular systems. Some become light-headed and dizzy, with heavy legs and a pounding heart, after standing for a few minutes. Some are unable to sit up at all. The culprit? A dysregulation of blood pressure and blood volume.
• Neurologic Signs Common in Fibromyalgia ABC News -  9-22-09
  Fibromyalgia isn't all in your head, new research suggests.
  In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms. Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real. The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.  ...
• The Spiritual Anatomy of Emotion: An Interview with Michael Jawer BeliefNet.com -  9-22-09
  Q. You have so many insights on highly sensitive people. Could you summarize your points and come up with a few ways HSPs can live and cope in an insensitive world?
  Michael: First and foremost, highly sensitive people (or, as another author has referred to them, "sensory defensive" people) should resist the temptation to feel marginalized or embarrassed. Estimates are that 15-20% of children, for example, are high reactors or sensory defensives. Often they grow up into highly sensitive adults.
  
  Consider that one especially acute form of sensitivity, Chronic Fatigue Syndrome (CFS), was put down as the "Yuppie Flu" a mere decade ago and yet, the more it's studied by reputable organizations, the more it seems to be a bona fide susceptibility that some people are born with. (Whether it's triggered has to do with accumulated stress in some cases, childhood trauma in others.) Same with synesthesia or overlapping senses: until brain imaging showed that certain people really do "hear a flavor" or " smell a color," their reports were regarded as metaphorical at best. So HSPs needn't deny the validity of her own perceptions.
  
  Likewise, a sensitive person should recognize his/her particular needs and be willing to speak up for them. It's a matter more of education than agitation: recognize that most people aren't highly sensitive and don't have share the same perspective, don't have the identical feelings. They can understand how another person lives, though, if that other person is patient and instructive, yet ultimately insistent. Realize that no one else can be counted to speak up for you, but do so with the same respect that you'd want for yourself.
• ME: Proof that it isn't all in the mind? The Telegraph -  6-1-09
  Belgian doctors, Professor Kenny De Meirleir and Dr Chris Roelant, have developed a simple test that, they claim, solves the mystery of 'yuppie flu'.
• 'Every step is a battle’ BendBulletin.com - 5/31/09
  The disease: Postural Orthostatic Tachycardia Syndrome, or POTS
  Table with common symptoms of POTS and recommended treatments.
• Diagnosing Chronic Fatigue Syndrome NY Prrebyterian  -  5-15-09
  Study Finds Link Between Chronic Fatigue Syndrome and High Lactate Levels in Brain
• What's wrong with you? It depends where you live The Independent -  4-28-09
  Jeremy Laurance looks at how different countries treat the same symptoms
• Dr. Cheney to speak in Northern VA Prohealth-  4-23-09
• What Is Fibromyalgia? What Causes Fibromyalgia?  Medical News Today, MA-  4-22-09
• A Second Shot at Life After Experiencing Years of Chronic Fatigue Syndrome empoweHer-  4-20-09
• Controversy over Chronic Lyme Disease Diane Rehm NPR 4-20-09
  Guests: Dr. Samuel Shor, Internist in private practice and Associate Clinical Professor at George Washington University. Pamela Weintraub, A senior editor at "Discover" Magazine and author of "Cure Unknown." Phillip Baker, Executive Director of the American Lyme Disease Foundation and microbiologist, former Project Officer of Lyme Disease studies at the National Institute of Allergies and Infectious Diseases.
• Fibromyalgia: Linked to Joint Hypermobility Syndrome? FM & CFS Blog, About-  4-20-09
• Paws-ability: Dogs' assistance immeasurable Star Tribune, MN-  4-18-09
  Comment to article: I myself have fibromyalgia,arthritis and chronic severe migraines, but at this point I am doing fairly well and my companion animal is more for keeping me moving and for pain relief. It was recommended by my Dr to get a dog which I had no objection to having always had one but with my Dr's recommendation I was allowed to have my fur friend in an apt bldg!
• Always tired, wondering why The Star Phoenix, Canada.com 4-18-09
  The $125,000 US recently awarded to Gordon Broderick, a University of Alberta researcher, to study CFS at a molecular level comes from the American-based Chronic Fatigue and Immune Dysfunction Syndrome Association of America, the largest patient-advocacy group for CFS sufferers.
  "They are a population of very sick people that are so frustrated, that they decided to take this into their own hands. Every nickel of this money comes from patients and their families, so if ever there was a sacred trust this is it," he says.
• Ischemia: Cause of Fibromyalgia Pain? FM & CFS Blog, About-  4-18-09
  Did you know that some fibromyalgia (FMS) pain may be caused by low blood flow to our muscles? The medical name for that is ischemia (ih-SKEE-mee-ah). We've had some limited evidence of ischemia in FMS for a few years, and it's an area that researchers are pursuing. Basically, muscles hurt and can't work right when they don't get enough blood and the oxygen it carries - think of how hard it is to walk after your foot has fallen asleep!
• Coping with chronic fatigue syndrome MedBroadcaset.com-  4-9-09
• Massachusetts doctor accused of fabricating pain studies Whistler Question, MA-  3-10-09
  SPRINGFIELD, Mass. - A Massachusetts anesthesiologist has been accused of fabricating results in nearly two dozen published studies that claimed to show after-surgery benefits from painkillers including Vioxx and Celebrex.
• Life slows to a halt for those with debilitating weakness Reno Gazette-  March 10, 2009
  Kelley Mooneyham spends 90 percent of her life in her king-size bed. Mooneyham has had chronic fatigue syndrome, a debilitating neuroimmune disease, since she was 17. "I got plucked out of life with this disease," she said. "It's a bone-crushing weakness."
• How Far Would You Go to Find a Cure Los Angeles Chronicle -  March 1, 2009
  How far would you go to find a cure for your child´s chronic fatigue syndrome (CFS)?
  Annette Whittemore went $5,000,000 far.
• 8 Steps to Conquer the Beast Within Oprah.com-  February 2009
  By Martha Beck
  Fibromyalgia is my bête noire, a French term for "black beast" that has come to mean something to be avoided because it frightens us or can cause us harm. Many of us have bêtes noires: dark moods (Winston Churchill called depression his "black dog"), addiction, self-loathing, a tendency to lurk in the shrubbery near former lovers' homes holding a machete in one hand and The Complete Works of Keats in the other. Whatever your bête noire might be, you may think it will ruin your life. I beg to differ. Like other wild animals, your bête can be studied, understood—even tamed. If you want to be the handler of your beast, instead of its prey, grab a pencil and prepare to learn a bête noire tracking exercise that I call the Lifeline.
• Finding Effective Treatement for your Pain US News and World Report - February 10, 2009
  Studies are underway to look into the effectiveness of alternative ways of delivering pain medications
  by January Payne
• Revolutionary Evidence: Cognitive training can alter the biochemistry of the brain ProHealth.com- Feb 7, 2009
• New UNR center raises hopes for CFS patients RGJ.com - Feb 5, 2009
  The $86 million Center for Molecular Medicine will expand the university's research capabilities into cancer and other diseases and house the headquarters of the Whittemore Peterson Institute, which offers hope in the form of clinical trials and treatment for people who suffer from such diseases as Chronic Fatigue Syndrome, fibromyalgia and atypical multiple sclerosis.
• CFIDSLink—e-News CFIDS Association - February 2009
• Life of constant pain is strain for many The Sun (OK) - Jan 26, 2009
• Acurian is Increasing Clinical Trial Information Virally BioIT World .com- Jan 26, 2009
• NEWS FLASH - A Test for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) ProHealth.com- Jan 24, 2009
• Model-Based Therapeutic Correction of Hypothalamic-Pituitary-Adrenal Axis Dysfunction  PloS Computational Biology (Full Article) - 1-23-09
• Chronic fatigue syndrome & child abuse: Disordered patients or disordered research? Emerging Diseases & Psychology Today.com - Jan 13, 2009
  Somehow the news that the majority of people with chronic fatigue syndrome had been subject to child abuse struck me as outrageous --could this really be? Having come through the Lyme wars, where patients are routinely mislabeled "psychiatric," this kind of assertion is always a red flag to me. For some perspective, I contacted Hillary Johnson...
• CFIDSLink—e-News CFIDS Association - January 2009
  
  

Selected Press Releases

• Majority of Surveyed Physicians Prescribe CYMBALTA and LYRICA for Treatment of FIBROMYALGIA but neither agent has the majority of its uses in first line - Decision Resources, October 2009
• Family of diagnostic tests for the Xenotropic Murine Leukemia Virus-like Virus for XMRV associated neurological disease (XAND) - Redlabs USA October 2009
• Advances in Science and Treatment of Pain Presented at 25th Annual American Academy of Pain Medicine Meeting January 28 - 31, 2009
  
  

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