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

• CFIDS Association President Kim McCleary Rips CDC Management of Chronic Fatigue Syndrome Research Budget Prohealth 11/7/08
• CFIDSLink CFIDS Association 11/7/08
• Half of Doctors Routinely Prescribe Placebos NY Times 10/23/08
  The most common placebos the American doctors reported using were headache pills and vitamins, but a significant number also reported prescribing antibiotics and sedatives. Although these drugs, contrary to the usual definition of placebos, are not inert, doctors reported using them for their effect on patients’ psyches, not their bodies. In most cases, doctors who recommended placebos described them to patients as “a medicine not typically used for your condition but might benefit you,” the survey found. Only 5 percent described the treatment to patients as “a placebo.”
• FM Online Newsletter - In the Spotlight: Preparing for Winter NFA 10/17/08
• Beautiful art can ease pain China Daily- 9/19/08
  [...] subjects rated the pain as being a third less intense while they were viewing the beautiful paintings, compared with when contemplating the ugly paintings or the blank panel. While distractions, such as music, are known to reduce pain in hospital patients, Prof de Tommaso [of Italy] says this is the first result to show that beauty plays a part. The findings, reported in New Scientist, also go a long way to show that beautiful surroundings could aid the healing process.
• What a Sleep Study Can Reveal About Fibromyalgia Newswise - 9/3/08
  Research engineers and sleep medicine specialists from two Michigan universities have joined technical and clinical hands to put innovative quantitative analysis, signal-processing technology and computer algorithms to work in the sleep lab. One of their recent findings is that a new approach to analyzing sleep fragmentation appears to distinguish fibromyalgia patients from healthy controls
• Brain dysfunction tied to fibromyalgia Reuters - 8/29/08
  Levels of chemicals in hippocampus may explain symptoms, study says
• Window washers rescued after work platform fails The Suburbanite - 8/26/08
  Restricted circulation can lead to orthostatic intolerance ... says information from the Occupational Safety and Health Administration (OSHA) in the United States. Circulation can be impeded for three reasons: lack of body movement, the vertical position of the body, and restrictive pressure placed on the veins by a harness.  Light-headedness, palpitations, nausea, headache and fainting are among the common signs of orthostatic intolerance.
• An invisible illness: Chronic Fatigue Syndrome The Suburbanite - 8/8/08
  Susan isn't sure how long she had symptoms of exhaustion related to CFS before going to the doctor, but her daughter was about 5 years old at the time Susan was diagnosed. "I figured it was just because I was a new mom," she said. "And then it just never went away." That's when she had the car accident. It was just a fender bender but it was enough. "I got rear-ended and it just kind of shook up my system enough that it trigged it," Susan said. "Sometimes a traumatic event in your life, a lot of stress in your life, something like that will jar you." ... "People come to the group if they're feeling good and they can get out, and people will come if they're not feeling good and seeking comfort," Susan said. "I want to get the information out to them so they can help themselves." Susan Midcap and her friend started their own local support group in 1989 when making trips to Cleveland to attend a support group there became too difficult. It's called The Akron-Canton Chronic Fatigue Syndrome and Fibromyalgia Self-Help Group.
• May Day! The Feds and ME/CFS: Congressional Briefing, Lobby Day & CFSAC Mtg  Phoenix Rising ME/CFS Newsletter - August 2008
• The Symposium on Viruses in Chronic Fatigue Syndrome (ME/CFS) Part I 
  Phoenix Rising ME/CFS Newsletter - July 2008
• [Canadian] Supreme Court sides with Honda on chronic fatigue firing
  Globe and Mail - 6/28/08
  The Supreme Court of Canada on Friday erased a landmark wrongful-dismissal award made to an employee of Honda Canada, Kevin Keays, who was fired after years of struggling with chronic fatigue syndrome. Employers breathed a sigh of relief as an award Mr. Keays had received for punitive damages – originally $500,000, but reduced to $100,000 by the Ontario Court of Appeal – evaporated altogether in Friday's 7-2 ruling.
• Fatigue syndrome affects millions
  National photo exhibit to highlight patients’ experience Maryland Community News- 6/23/08
  Restful, sustained sleep is not possible for Willow Turansky of Frederick. While her husband slumbers beside her, Turansky naps for no more than an hour at a time and glances at the clock. She wakes up in the afternoon only to feel more tired than when she went to bed.
• Vitamin D helps with chronic pain, fatigue UPI - 6/23/08
  An analysis of 22 clinical studies of patients with varied chronic pain and fatigue syndromes found almost all patients lacked vitamin D, U.S. researchers said. Stewart B. Leavitt, editor of Pain Treatment Topics and author of the report, said when sufficient vitamin D supplementation was provided, the aches, pains, weakness and related problems in most of the patients either vanished or were at least helped to a significant extent.
• A Protein from a Common Smoldering Virus Linked to Chronic Fatigue Syndrome and Depression Earthtimes - 6/23/08
  BALTIMORE, MD -- 06/23/08 -- A study suggests that a "smoldering" central nervous system (CNS) infection may play a role in conditions that plague millions of Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein present in Chronic Fatigue Syndrome (CFS) patients but not healthy controls that may contribute to psychological symptoms often associated with that and other disorders.
• Arnold woman sidelined by exhaustion -- Chronic fatigue an 'under recognized' illness
  The Capital (Annapolis) - 6/16/08
  [CFSupport group leader] Toni Marshall remembers the days when it was easy to leave the house and go to work, but that was 15 years ago.  The Arnold resident once worked as a tax auditor, spending long hours going over invoices while staying involved in several social groups.  But her activity plunged after she developed a sinus infection. Even after it cleared up, she noticed she could get 12 to 15 hours of sleep and still wake up exhausted.
• It’s not ‘all in your head’: Examining stress key to healing The Times Leader - 6/3/08
  The starting point for these disorders may be chronic stress. While some stressors may help us to survive and thrive, stressors that we perceive as persistent, difficult and undesirable produce unhealthy changes in our immune and other body systems. Although much of our stress may be mental or emotional in nature, many other things create stress on the body, including infections, unhealthy foods, nutrient deficiencies, inadequate rest and toxins in the environment.
• Stress associated with impending storm can wreak havoc on health TambaBay.com - 6/3/08
  Not all of a hurricane's damage is obvious. Even before one blows through, it can wreak havoc, and this we may not see.  ...  "It is very clear that the autoimmune illnesses such as lupus and fibromyalgia'' will be worsened by chronic stress. ...  A hurricane warning is also a reminder to check your supply of prescription medications. If you are not getting refills at a local drugstore, the typical few days of warning won't give you time to reorder by mail.
• A ‘Creative’ way with words Vernon Morning Star - 6/1/08
  People look forward to Creative Chaos to see favourite artistans and get a look at the new work on display. Shelagh McGinn will be there for the first time with her jewelry, accessories and home decor items made from recycled materials. ... A self-confessed workaholic, she spent her career in office work and when she had to stop work because of chronic fatigue syndrome and fibromyalgia, she didn't know what to do with the slowed down lifestyle necessary for her health. "I always wanted to do something creative. I have a lot of patience for details and I'll work on something until it's perfect. It's good for me to be able to work at home on my own hours so I can stop when I'm in pain or tired," said McGinn.
  
• Expert Q & A Learning Firsthand About Chronic Fatigue Syndrome NY Times - 5-30-08
  (Excellent piece!! - Thank you, Dr. Jason)
  What’s strikingly different about this illness is that the majority of people not only have to deal with a particularly debilitating health problem, they also have to deal with the stigma and societal reaction and disbelief and illegitimacy, and that is crushing, Your work colleagues say you’re malingering, medical personnel say there’s nothing they can find so they’ll refer you to a psychiatrist, and your friends begin to complain that you’re never calling them, you’ve rejected them. So this person is in the whirlwind of a terrain of disbelief that is probably in some ways unique.
  
  
• Elusive Battle: Pain — and Skepticism — Still Plague Fibromyalgia Patients
  Carolyn Cosmos The Washington Diplomat- 5-01-08
  Despite a preponderance of research backing them up, fibromyalgia patients still find themselves waging a medical and public opinion battle for recognition of their pain.
  
  
• Co-Payments Soar for Drugs With High Prices The NY Times - 4/14/08
• Insurers Faulted as Overloading Social Security The NY Times - 4/1/08
  The Social Security system is choking on paperwork and spending millions of dollars a year screening dubious applications for disability benefits, according to lawsuits filed by whistle-blowers.
  Insurance companies are the source of the problem, the lawsuits say. The insurers are forcing many people who file disability claims with them to also apply to Social Security — even people who clearly do not qualify for the government program.
• Little-known disorder sidelines young woman [POTS] Cleveland Jewish News - 3/27/08
               Announces a POTS awareness video.
• When the Disease Eludes a Diagnosis [CFS, FM, other] The NY Times - 3/25/08
• Jury orders punitive damage of $14 million The Union Tribune - 3/10/08
  Johnson, 49, who suffers from chronic fatigue, lupus, fibromyalgia and an immune system disorder, spent much of the six-week trial with her head down on the table between her attorneys. Sometimes she rested on the floor, overcome by pain and exhaustion. The Chula Vista woman was in court because her insurance company didn't believe she was sick. But a jury did. On Thursday, the jury ordered Prudential Insurance Co. to pay $14 million in punitive damages on top of $1.5 million it awarded Johnson last week in compensatory damages to cover benefits the company had refused to pay.  ... it could take three years for Johnson to receive any money.
• 'Talk Therapy' Takes on Chronic Fatigue Syndrome, Coming Soon to Canada
  The Globe and the Mail - 3/8/08
  ‘It was very much like being a dead person … I could only lie there.’ The victim of an exhausting, little-understood malady, this young woman spent six long years confined to a darkened room. Zoe Cormier describes how a new – and surprisingly simple – therapy brought her back to the light
• Tired Beyond Relief The Washington Post - 3/4/08
  While Fatigue Afflicts Many, the Cause Can Be Maddeningly Elusive and Treatment Often Limited
  
• Fybromyalgia Dealing with the Pain The Herald Journal - 2/19/08
  Jan Chambers’ goal is to help others with fibromyalgia recognize the stressors in their lives that may be creating pain and help them discover how to change their lifestyles to live more comfortably. “Our bodies are really sensitive and stressors can be anything from people, to odors or even something like a breeze on the back of the neck in a theater,” she said.  ...  Chambers often draws a comparison between the illness and a dragon that needs to be taken into control. “When you are at the tail end of the dragon, you cannot lead it or coerce it to respond to you, much less even recognize the difference between the head and the tail,” she said. “This is where support from spouses, family, friends and yes, a support group is very important.”  ... As Chambers has begun to uncover means to ease her pain, she has found herself becoming more grateful, seeking joy in the functional areas of her life. This sense of gratitude and joy is what she hopes to continue to bring through her support group to those suffering from fibromyalgia in Cache Valley. “When you lose it all and then start coming back, gratitude becomes a way of life,” she said. “You’re still living your life, just differently.”
• Creating her own hope in the CFS fight Lake Oswego Review- 2/7/08
  Mason has slept up to 20 hours in a day. She has chronic headaches. “I always feel like I have the worst case of the flu.” She walks off balance. She has constant pain in her muscles. She is clumsy and drops things. She is always sore. “But I look perfectly normal,” Mason said. “It’s hard to get any sympathy when you look healthy.”
• 'I'm afraid all the time now' KOMO TV - 2/6/08
  A veteran corrections officer says her boss sexually harassed her for years, making her terribly sick. ... over the past two years, this tough woman crumbled. "It's like going through a death - of myself." Doctors diagnosed her with post traumatic stress and fibromyalgia, a debilitating pain disorder.
  Eventually Ernsdorff's pain became so unbearable she nearly had to give up the one thing that gave her some emotional relief - riding horses. She used to be a competitive rider on an Olympic hopeful team. Her stable walls are filled with awards.
• SG Leader Shares Her Group's Awareness Day Success FAME Connection - 2/5/08
• Video: Fibromyalgia often misunderstood. Baffling Set of Symptoms ABC 7 LA - 2/1/08
• Maladies: Hormone Levels and Chronic Fatigue NY Times - 1/29/08
  Women who suffer from chronic fatigue syndrome may be starting the day at a disadvantage. A new study finds that they wake up with lower levels of a hormone that helps people deal with stress.
• New Insights Into Genital Pain in Women Jane E. Brody, NY Times - 1/29/08
  ..."A recent study financed by the National Institutes of Health and conducted by Bernard Harlow at Harvard University indicated that as many as one woman in six, or 13 million American women, may suffer from vulvodynia during their lives. As with Ms. Veasley, for 6 percent of women the symptoms begin before age 25 and are usually limited to burning pain in response to touch or pressure at the opening of the vagina."  ...
  "In addition, Dr. Ledger said, “there’s good evidence that with vulvodynia as a whole, the women have more nerve fibers in the vulva and they are firing more pain signals to the brain.” He continued: “It’s a kind of vulvar fibromyalgia. Most patients with vulvodynia have very tender glands at the entrance to the vagina.”"
• Drug used by Ledger linked to six deaths in UK [Ambien] Sunday Herald, UK - 1/27/08
• The Z's factor: Find out what causes your insomnia Portsmouth Herald News, NH - 1/25/08
  Stages 3 and 4 are called delta sleep. These are the deep sleep stages when body restoration and repair occurs. Temperature drops even further during this phase, brain waves are slow and there is decreased muscle tone. Fibromyalgia may be associated with poor delta sleep, Ostransky says. People woken during delta sleep are often groggy and disoriented. Night terrors occur during this sleep stage.
• Doctors, hospitals more accepting of acupuncture Utica Observer Dispatch - January 24, 2008
• Are you an obnoxious patient? CNN - January 23, 2008
  The doctors we interviewed agreed that getting the best care means being empowered but not obnoxious. Here are tips from a few of them, plus some from a patient.
• Allergies blamed for some cases of irritable bowel Reuters - January 23, 2008
  Overall, patients reporting allergic conditions such as hay fever, eczema, and asthma were three times more likely than other patients to have IBS, the investigators report in the Annals of Allergy, Asthma and Immunology this month.
• Pfizer 4Q Profit Falls but Beats View Houston Chronile - January 23, 2008
  Sales of fibromyalgia treatment Lyrica rose 60 percent to $564 million.
• ME was worst and best thing to happen to me ic Coventry UK - January 23, 2008
• Controversy Over Fibromyalgia Paul F Campos, Scripps- January 22, 2008
• New approaches to treating fibromyalgia The Buffalo News & USN&WR- January 22, 2008
• Naperville woman says cacao plant helped to cure her illness[FM] Daily Herald IN - 1-20-08
• RX for Big Pharma - heal thyself. Hey, try this pill. SF Gate - January 18, 2008
• National Fibromyalgia TV news segment:
     Diagnosing Fibromyalgia CBS 2 HD NY (Video) - January 17, 2008 
      Health: Fibromyalgia  CBS 3 Philadelphia (Video & Transcript) - January 25, 2008 
      FM Sufferers Have New Hope: Researchers Tackle Misunderstood Syndrome 
      The INDY Channel, IN (Transcript) - January 25, 2008
• Are You Afraid To Die? Gather.com - January 17, 2008
  Following a traumatic event in my life in 1997, I developed Chronic Fatigue Syndrome (CFS). For people with the most severe cases of CFS, just getting out of bed to go to the bathroom or to eat at a table can be either exhausting or painful or both.  ....
  I do propose that we change our attitudes toward death and the stressors of life so that we can all live more peaceful, safe and loving lives. Love is part of the equation. Those under constant stress have trouble feeling love, expressing love and accepting love.
• Picture of Antidepressants Too Rosy? Review Shows "Selective" Reporting of Studies Inflates Effectiveness of Antidepressants WebMD Medical News - January 16, 2008
• Like Chronic Pain, Fibromyalgia Debate Persists ABC News - January 15, 2008
  While Patients Maintain Pain Is Real, Debate Over Condition and Treatments Continues
  ABC News - January 15, 2008  -- Same page, see also a video: The Mystery of Fibromyalgia
• Private 'Faces' of chronic fatigue syndrom get public exposure Burlington County Times (Phillyburbs.com) - January 15, 2008
• Fibromyalgia on Diane Rehm Show NPR - January 15, 2008
  Guest host: Katty Kay of the BBC. A new drug has been approved by the F.D.A. to treat fibromyalgia, a condition characterized by chronic and widespread pain. We'll talk about some of the ongoing questions related to its diagnosis and treatment. Guests:
  Frances Bremer, spokesperson, National Fibromyalgia Association
  Dr. Nortin Hadler, Professor of Medicine and Microbiology/Immunology
                University of North Carolina at Chapel Hill Attending Rheumatologist, UNC Hospitals
  Alex Berenson, reporter, New York Times
  Dr. Patrick Wood, researcher and clinician specializing in fibromyalgia, chief medical officer of
                 Angler Biomedical Technologies
• Drug Approved. Is Disease Real? (FM) NY Times (Front Page) - January 14, 2008
            Doctors Respond to this article FM Network
• Health: Chronic Fatique Syndrome Philadelphia (CBS 3) - January 14, 2008
• Putting a face on disease (CFS) South Jersey Life- January 13, 2008
  
  

Selected Press Releases

• FDA Alerts Health Care Providers to Risk of Suicidal Thoughts and Behavior with Antiepileptic Medications 1-31-08
  ... patients taking these drugs have about twice the risk of suicidal thoughts and behaviors (0.43 %), compared with patients receiving placebo (0.22 %). This risk corresponds to an estimated 2.1 per 1,000 more patients in the drug treatment groups who experienced suicidality than in the placebo groups.
  Antiepileptic drugs in the analyses included the following:
   Carbamazepine (marketed as Carbatrol, Equetro, Tegretol, Tegretol XR)
   Felbamate (marketed as Felbatol)
   Gabapentin (marketed as Neurontin)
   Lamotrigine (marketed as Lamictal)
   Levetiracetam (marketed as Keppra)
   Oxcarbazepine (marketed as Trileptal)
   Pregabalin (marketed as Lyrica)
   Tiagabine (marketed as Gabitril)
   Topiramate (marketed as Topamax)
   Valproate (marketed as Depakote, Depakote ER, Depakene, Depacon)
   Zonisamide (marketed as Zonegran)
• Member of NFA Leaders Against Pain Coalition Featured in Asian American Media 12-27-07
• The closing of The Fibromyalgia Association Created for Education and Self-help [FACES]. 12-07
• Healthcare Gaps: New Council to Target Barriers in Care for Patients with Fibromyalgia
  12-5-07

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