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

• Humboldt County blood banks warn against chronic fatigue patients donating The Time-Standard (CA), D. Tam - 12-9-10
  Concern over the possibility a viral infection can be passed through blood transfusions has prompted blood banks and the American Red Cross to ban patients with chronic fatigue syndrome from donating.
  ... ”Originally, we didn't want chronic fatigue syndrome patients donating because it wasn't good for them,” he said.  ....  Additionally, donors are supposed to be asked, “Do you feel well today?” before they give blood in order to deter patients who shouldn't be donating.
  ”It's rare that a fatigue patient is going to say, 'Yes, I feel well and healthy today,'” Schallert said.
• Use “Powerful Rest” to Improve Your Life Bottom Line Health, Carole Jackson - 12-6-10
  In Dr. Edlund’s view, lying around on the couch or sleeping are classic examples of passive rest — which has value, of course. However, Dr. Edlund’s primary focus is something else — the pursuit of active rest. This includes activities and exercises that he describes as “restorative in that they rebuild and rewire body and mind… let you retune and reset… and consciously direct your body and brain to be more capable of doing whatever you want to do.”
• Chronic Fatigue Syndrome: A Celebrated Author's Untold Tale Elle, Aaron Gell - 12-2-10
  Laura Hillenbrand spins irresistible accounts of heroic figures undaunted by long odds. But she’s frequently so unwell that she scarcely leaves home.
• Triple That Vitamin D Intake, Panel Prescribes Wall Street Journal, Melinda Beck - 11-30-10 
• Validation in a Virus? Newsweek Claudia Kalb - 11-28-10 
  For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
• Laura Hillenbrand releases new book while fighting chronic fatigue syndrome Washington Post, Monica Hesse - 11-28-10 
  "I have to detach myself completely from aspirations," Hillenbrand says, discussing how she has learned to cope with her illness. "I hardly ever listen to music anymore because it arouses all of this yearning in me." She numbs herself to the things she cannot have.
  Journalists have liked pointing out the irony of Hillenbrand's work: A woman for whom walking around the block constitutes a marathon writes about the finest specimens of physical endurance.
  It's not irony, she says. It's escape. "I'm looking for a way out of here. I can't have it physically, so I'm going to have it intellectually. It was a beautiful thing to ride Seabiscuit in my imagination. And it's just fantastic to be there alongside Louie as he's breaking the NCAA mile record. People at these vigorous moments in their lives - it's my way of living vicariously."
  
  In the carefully calibrated world of Laura Hillenbrand, every reaction has an equal and opposite reaction. On one day, she might agree to an interview but skip a shower. Energy is finite, and she typically has enough for one activity a day. She is constantly measuring herself, monitoring herself. She might write a bestseller - she might write two - but the ensuing fame will touch her only tangentially. She will not see her books in Barnes & Noble. She will not move into a bigger house; too much more space would be overwhelming.
  People ask, sometimes, whether she would consider writing a book about chronic fatigue syndrome. She doesn't plan on it. She already knows what that life is like.
• Chronic Fatigue Symptoms Could Indicate 'Functional Weakness' Huffington Post, Pillay - 11-8-10
  This study concluded that denial was more likely than secondary gain -- that is, that people with functional weakness were not likely to be missing work because it suited them, or seeking attention because they wanted it. There seemed to be other factors at play.
  One important factor was the greater panic disorder in people with functional weakness. This group of patients appeared to have non-fearful panic -- that is, their anxiety may have been largely unconscious. Several studies have now shown quite convincingly that fear can be registered outside of conscious awareness in the brain [2] and I have dedicated a chapter to this phenomenon in my book "Life Unlocked: 7 Revolutionary Lessons To Overcome Fear".
  Thus, if you have weakness, fatigue and pain with no identifiable physical or psychological cause, your unconscious brain may be wreaking havoc on your insight due to the anxiety that you cannot feel as anxiety, but which nonetheless impacts your brain in very significant ways.
• Invoke soul power Times of India - 11-9-10
• Chronic Fatigue Syndrome: What's There To Be Thankful For? empowher - 11-9-10
• Chronic Fatigue Symptoms Could Indicate 'Functional Weakness' HuffingtonPost - 11-8-10
• XMRV at the Tipping Point - A Tale of Two Conferences  PhoenixRising - 10-22-10
• CFS Panel Wants Name Change for Disorder MedPage Today - 10-14-10 
  "A federal advisory committee unanimously endorsed a recommendation Thursday to change the name of chronic fatigue syndrome (CFS) to CFS-ME, citing a need to make the disease sound more serious.
  The ME can stand for either myalgic encephalomyelitis or myalgic encephalopathy, the panel said."
• 'People have no idea how painful this is' Fredericksburg.com - 10-10-10 
  Several members of our CFSupport group were interviewed for this article.
• Blog article: CFS: To Suffering, Add Anger White House Chronicles - 10-8-10 
  "I’ve been walking on the sad side. My mailbox is jammed with dozens of heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS); a terrible disease that is little understood, little researched and hard to diagnose.... I’m not a medical writer. Writing about medicine has never interested me. But in a career of writing for newspapers, spanning more than 50 years, I’ve never received so much mail that has so consumed the thought process and torn at the heart. There is a ghastly disease out there that cries out to be taken seriously, to get proper attention in the medical world, and to be prioritized along with the other big diseases claiming research dollars."
• Buyers with hypersensitivity disorder should raise their concerns early Washington Post 9-18-10 
  "For people who are seriously allergic or sensitive to common household chemicals, buying the right home is fraught with difficulty. But with a cooperative seller -- and some important protections written into the purchase contract -- the hazards can be manageable."
• F.D.A. Backtracks and Returns Drug to Market NY Times 9-4-10 
  "Two weeks ago, the Food and Drug Administration announced that it would remove the drug midodrine from the market because the drug’s maker never confirmed that the medicine — approved in 1996 under an abbreviated process — actually worked against dizzinessand fainting.
        But 100,000 patients take midodrine for conditions many say would otherwise be disabling, and many flooded the agency with complaints. So on Friday morning, top F.D.A. officials announced that they had backtracked and would continue to allow midodrine to be sold. The announcement came after inquiries by The New York Times.
• Excessive Sweating in Fibromyalgia & Chronic Fatigue Syndrome About.com Blog-  8-31-10
• Chronic fatigue study points to retrovirus Washington Post, Nation -  8-24-10
• New Hope in Fatigue Fight Wall Street Journal -  8-24-10
• Controversy Surrounds Link Between CFS and HIV  Foodconsumer-  8-24-10
• Chronic Fatigue Link to Mouse Virus Renews Debate Over Illness  Bloomberg Businessweek -  8-24-10
• Mouse virus link to chronic fatigue studied Charlotte Observer, AP 8-23-10
• Study Links Chronic Fatigue to Virus Class  NY Times 8-23-10 
• Another Turn of the Retrovirus Kaleidoscope CFIDS Association 8-23-10
• MRV Renamed To HGRV?  Veterans Today-  8-21-10
  From an aesthetic standpoint it only gets worse…the disorders associated with HGRV are HGRADS (Human gamma retrovirus associated disease).
• Shire To Take ProAmatine Off The Market, No Trials Planned Wall Street Journal-  8-17-10
  Shire notified the FDA in November 2009 of the plan to withdraw its NDA for ProAmatine [midodrine hydrochloride], the spokesman said, adding: "Monday's communique was the first response we received from the FDA on this after that submission back in November."
• Findings by Reno scientists confirmed by U.S. government Reno Gazette-Journal -  8-16-10
  Two Reno scientists, who last year discovered a new infectious human retrovirus they linked to Chronic Fatigue Syndrome, said Monday that their findings have been replicated and confirmed by the U.S. Food and Drug Administration. ...
  “There has been an issue over whether anybody could replicate our study, and it will not only confirm our findings but extend our findings, which is really exciting for us,” she [Mikovits] said.
• Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome About.com Blog-  8-16-10
• Delay in Release of Study on Chronic Fatigue Syndrome Prompts an Outcry NY Times -  7-14-2010
• 'Mind-body' therapy shows promise for fibromyalgia  Reuters -  7-2-10
  The study, of 45 women with fibromyalgia, found that those who learned a technique called "affective self-awareness" were more likely to show a significant reduction in their pain over six months.
• The CDC XMRV Study: How Not to Find XMRV? Cort Johnson, Phoenix Rising -  7-2-10
• CDC Team’s XMRV-Chronic Fatigue Syndrome Paper Is Out Health Blog, WSJ -  7-1-10
• July 2010 CFIDSLink—e-News CFIDS Association of America -  7-1-2010
• Chronic-Fatigue Link to Virus Disputed Wall Street Journal -  6-30-10
  One Research Group Finds Virus XMRV in the Blood of Syndrome Sufferers, One Does Not; Papers Held From Publication
• Health Restoration Fibromyalgia Is No Joke Savanah Tribune, GA- 6-30-10
• Dr. Nancy Klimas on Her New Clinic and More Blog Interview, About ME/CFS -  6-17-10
• The push and pull over a chronic fatigue syndrome study Chicago Tribune,- 6-14-10
  A paper that linked a retrovirus to the disease brought a rush of hope from patients, then a second wave of skepticism.
• Have Unexplained Pain? These Questions Could Lead to a Fibromyalgia Diagnosis US News & World Report, by January Payne - 6-3-2010
  New method for diagnosing fibromyalgia allows doctors to bypass tender point exam
• Living with a potentially deadly condition  Malta Today -  5-30-2010
  Myalgic Encephalomyelitis is a rare condition which is not at all well known, although in the UK there are over a quarter of a million sufferers. GERALD FENECH spoke to Nicola Reiss, who lives in Malta and who was diagnosed with the condition some years ago
• Origin of Chronic Pelvic Pain in Women Can Be Elusive US News & World Report - 3-8-10
  Many women never get a diagnosis, though persistence can really pay off
• Migraines, memory loss: Was it all in his head? Medical Mystery, Washington Post -  2-16-10
  By 2007 Adam began complaining of intermittent dizziness and a headache, particularly when he got out of bed in the morning. The neurologist thought he might be showing signs of a condition called POTS -- postural orthostatic tachycardia syndrome -- an imbalance of the autonomic nervous system, which controls blood flow to various parts of the body. POTS patients have impaired circulation, and the disorder is characterized by a rapid rise in heart rate and a drop in blood pressure upon standing.
  
  The cause of POTS, which is not well understood, is unknown. The condition typically occurs in females between 15 and 50, sometimes after a pregnancy, trauma or viral illness, according to the National Institutes of Health. POTS patients often faint, but Adam did not. And a key diagnostic test for POTS called a tilt-table test -- it involves strapping a patient to a table that is tilted while blood pressure and heart rate are monitored -- was negative, Karen Hammerman was told, because Adam's blood pressure did not fluctuate.
  
  Another neurologist told Karen Hammerman that some of his symptoms could be caused by POTS but that he had never seen a POTS patient with memory loss. "He said we should dial down the dialogue: 'If you stop talking about it, he'll stop paying attention to it.' " Said Hammerman, "We ignored it for two weeks, and he got worse."
  
  Adam remembers little from those months. "I remember I was scared, but I wasn't freaking out every single day," he said. "I did get a little sick of going to all the doctors, but I kept hoping one would figure it out."
  
  She kept coming back to one episode: For a year Adam had been counting down the days until he was old enough to get his learner's permit. But over the summer he told his mother he needed to stop driving because something was really wrong with him. Why would a 16-year-old boy sabotage that, she wondered.
  
  "These kids are so badly affected because everyone thinks they're lying. Some go from doctor to doctor and become depressed and isolated," he said. "And parents suffer along with their kids."
• XMRV not found in 170 additional UK chronic fatigue syndrome patients  Virology Blog -  2-15-10
• How Bad Is Your Pain? US News & World Report, January Payne  2-10-2010
  Ask yourself these questions to help evaluate whether you need treatment for chronic pain
• Mother cleared of ME daughter's attempted murder  BBC News -  1-15-10
  A mother has been found not guilty of the attempted murder of her severely ill daughter who suffered from ME.
• Doctors, school, friends thought I was faking chronic fatigue syndrome  Times Online, UK - ‎1-25-10‎
  As the trial of Kay Gilderdale puts ME back in the spotlight, we ask why more is not being done to help sufferers.
  
• Seconds out - A fight over the cause of a mysterious disease  The Economist -  1-7-10
  The new year, though, has brought new complications, in the form of a study that has been unable to replicate Dr Mikovits’s work. Writing in the Public Library of Science, Otto Erlwein of Imperial College, London, and his colleagues report that they are unable to find XMRV in any of almost 200 CFS patients in Britain.
  One possible explanation is that one of the two groups of scientists made a mistake in their testing, something that both are adamant is not the case. As scientific punch-ups go, this is shaping up to be a good one, with blows (albeit polite ones) being thrown across the Atlantic.
• Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?  Discover Magazine -  1-6-2010
• Chronic Fatigue Syndrome Attacked Again Science Magazine -  1-6-2010
• Woman finds relief from fibromyalgia pain   Suburban Chicagonews.com -  1-6-2010
  Quest inspires Cherie Stechly to write book
  With the assistance of a supportive physician -- Dr. R.W. Schubert of Joliet, who also wrote a forward to Stechly's book -- Stechly reviewed her life history of illnesses, her environment and her lifestyle practices. She then overcame her symptoms through researching possible antidotes, which included dietary changes, stress reduction, practicing a positive attitude, applying spiritual principles, adding vitamins and herbal remedies. Stechly said her fibromyalgia is now in full remission.
  "I took full responsibility for my illness and it was not easy," Stechly said. "I was relentless in searching for a cure for me. I did not take a single day off. I have five shelves at home full of books and I learned about how every part of my body worked."
• 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
  
  

Selected Press Releases

• National Fibromyalgia Association Co-Founder Personally Endorses ‘Goodnighties’ as an Effective, Affordable Solution for Better Sleep! - July 2010
• A FM Drug that improves SLEEP QUALITY more PFIZER’S LYRICA would earn sizable PATIENT SHARE in the U.S. AND EUROPE - Decision Resources, Jan 2010
• CFIDS Association of America Expresses Concerns About UK XMRV Replication Study - Additional and More Rigorous Research Needed - January 2010

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