2011 News Coverage
CFS / CFIDS / ME - Chronic Fatigue Syndrome
FM / FMS / Fibro - Fibromyalgia Syndrome
OI / POTS / NMH / MVPS/D - Orthostatic Intolerance Dysautonomias
IBS / IC / MCS / GWI / ... - Overlapping Syndromes, Symptoms to CFS/FM/OI
Table of Contents
Related Sections on this Website
Selected Recent News (CFS, MCS, FM, ME, POTS, NMH, MVPS, OI, IBS, Lyme, sleep, etc)
Science journal retracts controversial research paper
Chicago Tribune by Trine Tsouderos -
A scientific paper embraced by many chronic fatigue syndrome patients as a ray of hope has been retracted after a tumultuous year that included allegations of data manipulation and felony charges involving stolen property against the study's lead researcher.
Laura Hillenbrand's Acclaimed Bestsellers Haven't Changed Her
The Daily Beast -
Laura Hillenbrand is the antithesis of the popular concept of a world-famous, bestselling author. No celebrity photos, awards, or elaborately framed book jackets adorn the walls of her unprepossessing, two-story, yellow-clapboard row house on a quiet side street in Washington, D.C. She doesn't travel the globe to embrace her millions of fans, nor does she appear at the social soirees of the literary circuit. Instead she relies mostly on Facebook, a landline phone and old newspapers, letters, and diaries purchased on eBay as her source of contact with the outside world.
Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale
VIROLOGY BLOG by David Tuller -
Some readers might know that I have written a number of articles on chronic fatigue syndrome as a freelance contributor to The New York Times, so I want to be clear: The Times has nothing to do with this piece. I want to thank Professor Racaniello for letting me invade his space to post this very long story.
Stony Brook’s Friedberg on $600,000 Grant for Studies in Chronic Fatigue
Stoney Brook Press by Marcela Maxfield -
The project, titled “Efficacy of Home-Based Self-Management for Chronic Fatigue”, focuses on establishing a cost effective program in which patients with CFS can apply individualized, ability-based treatments to help themselves feel and function better.
Study: Exercise may help memory of Fibromyalgia patients
USA Today by Kathleen Doheny, HealthDay -
While more study is needed, Walitt said that "overall, exercise seems to be a beneficial thing for fibromyalgia patients, in terms of overall well-being. If you can exercise and make it work for you, that's great."
However, he noted, some people with the condition can't tolerate exercise. Working out "is not going to be the answer for everybody and it's not going to fix anybody," he said.
Chronic Fatigue Syndrome -- A Treatable Autoimmune Disease
HuffPost Healthy Living by Matthew Edlund, MD -
10-20-11 (Praised as most readable about the rituximab study by a member)
Chronic fatigue syndrome wrecks people's lives. It does so physically, socially and economically. ...
I think the Bergen study will provoke many more arguments about CFS, particularly what its main manifestations really are and what to do about it
Cancer drug can help chronically exhausted
Spiegel (Germany) by Nina Weber -
The patient feels empty, suffer pain, rarely leave the bed. The chronic fatigue syndrome was considered a mysterious illness, until Norwegian doctors successfully treated with a cancer drug. Now, however, larger studies could fail - lack of interest on the manufacturer.
Chronic fatigue syndrome eased by cancer drug
New Scientist, Andy Coghlan -
An anti-cancer drug could hold the key to treating chronic fatigue syndrome (CFS). Symptoms of the disease eased in 10 of 15 patients given rituximab, an anti-lymphoma drug.
Rituximab Trial Shows Promise
Research1st by K. Kimberly McCleary -
A study published on Oct. 19, 2011, in PLoS ONE reports on results of a double-blind, placebo-controlled trial of the drug Rituximab in CFS.
Anti-cancer drug Rituximab promising for ME/CFS treatment
Cure talk, Benson -
Norwegian researchers found that Rituximab, an anti-cancer drug used to treat Hodgkin's disease, also caused remission of symptoms in a patient who had co-morbid ME/CFS.
Dr. Lucinda Bateman: Fighting the Fight Against Pain and Fatigue
Everyday Health -
Through her medical practice, clinics, research, and education, Lucinda Bateman, MD, is on a crusade to drive awareness about the often devastating illnesses chronic fatigue syndrome and fibromyalgia.
Sarah Kathryn Sharp is Miss Samford 2012
Samford Crimson -
harp chose to promote a cause that is near and dear to her heart, DYNA, the Dysautonomia Youth Network of America. This organization seeks to create awareness for dysautonomia, a complex condition caused by a dysfunction of the autonomic nervous system. At the end of her freshman year of high school, Sharp experienced disjointed symptoms that didn't seem to make any sense. Over a four-month period, the symptoms grew worse. Sharp lost motor function to the point where she could not even lift a glass of water to her mouth, and had chronic nausea and dizziness. Sharp was eventually bed-ridden and lost 90 pounds due to the severity of her condition. After several medical consultations, Sharp was diagnosed with dysautonomia.
Ailment Can Steal Youth From the Young
The NY Times, Jane Brody -
Instead, after his racing heart caused chest pains that felt like an impending heart attack, his mother whisked him off to the Mayo Clinic in Rochester, Minn., where in just two hours he learned he had a form of autonomic dysfunction known as POTS, short for postural orthostatic tachycardia syndrome.
Scientists Back Down From Viral Cause of Chronic Fatigue Syndrome
TIME Healthland, M. Melnick -
A new paper published online in Science on Thursday has failed to confirm a link between a mouse retrovirus called XMRV and chronic fatigue syndrome. Along with the new study, the authors of the controversial original study that first associated the virus with the illness in 2009 published a partial retraction of that work.
Twittering the IACFS/ME Conference
Phoenix Rising, Cort -
Quick hits from International ME/CFS Conference in Ottawa.
Re-inventing 'CFS'- the International Consensus Criteria for ME: the Marj Van de Sande Interview
Phoenix Rising, Cort -
The International Consensus Criteria for . . . what? Not CFS. . . not ME/CFS but ME (myalgic encephalomyelitis) - hit the internet with a bang. This wasn't just an attempt to give CFS a new and better name - it was far bolder than that; this was an attempt to introduce a 'new' disorder to the medical community - a disorder the authors feel has been subsumed under an overly broad definition for chronic fatigue syndrome for decades.
Miracle Horse Allows Woman to Give Back
Utica Observer-Dispatch, John Pitarresi -
A year ago, Andrea Piazza could barely walk.
Now, thanks to The Root Farm and horse named Stella, she’s running.
And Piazza does have a disability – Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia., which refers to diseases of the autonomic nervous system. She began having symptoms five years ago, and was diagnosed about a year ago.
“Every time I stand up, I get a little dizzy,” Piazza said. “It’s hard for me to walk. My brain couldn’t keep with my body. Sometimes I would pass out.” …
Piazza doesn’t know if she ever will be cured – “Some doctors say yes, some say no,” she said – she is grateful for the great strides she has made.
“I didn’t think the horses were going to do anything,” she said. “I did it to try it, and they definitely proved me wrong. It ended up being miraculous. I don’t think there is a word that I can choose. It’s beyond words what they’ve done for me. I had given up hope of every being able to walk again. I don’t know what I’d be doing if it wasn’t for her (Stella).”
Light on ME/CFS Pts I/II/III – the Quickie Version (The Study, the Dorsal Ganglia and the Herpesviruses)
Phoenix Rising, Cort -
In this three part series we looked at the Light’s exciting work on ME/CFS. First – we looked at the Light’s attempt to validate their gene expression findings, then we examined what they believe may be ground zero for CFS, and finally we brought their findings together with a theory paper by Shapiro which asserted that a different kind of herpesvirus is at work in ME.
Bowling event raises more than $2,000 for CFS research
Baltimore Sun -
More than 100 people showed up to help strike out chronic fatigue syndrome at the Bowl Away Chronic Fatigue Syndrome fundraiser at Brunswick Bowling Center, in Columbia, on Saturday, July 9.
International Consensus Criteria Published for Myalgic Encephalomyelitis
Research1st by K. Kimberly McCleary -
On July 20, 2011, the Journal of Internal Medicine e-published ahead of print "Myalgic Encephalomyelitis: International Consensus Criteria."
It’s Science, but Not Necessarily Right
NY Times Opinion by Carl Zimmer -
Even when follow-up studies manage to see the light of day, they still don’t
necessarily bring matters to a close. Sometimes the original authors
will declare the follow-up studies to be flawed and refuse to retract
their paper. Such a standoff is now taking place over a controversial
claim that chronic fatigue syndrome is caused by a virus.
- Rivka Solomon Acts Up, Chronic Fatigue Be Damned Ms. Blog - 6-2-11
her fellow protesters, Solomon has paid dearly for her activism, taking
weeks to recover from each action. She was in bed for three days after
last week’s San Francisco protest. But she hopes that her recent
protests, like her book, serve as role models for others to stage such
actions. She actively encourages other patients to stage protests at
one of the 20 HHS and CDC satellite and regional offices across the
U.S., even offering the concrete support of borrowing her homemade
- Maybe mother doesn’t know best Ms. Newton Daily News, Jasper Co. IA - 6-1-11
the old adage we were taught as children, usually by our mothers:
“Sticks and stones can break your bones, but words will never hurt
you?” Maybe for the first time in modern (or ancient) history, our
mothers were wrong. Shock.
Those words really do hurt, and there’s a
reason for it. New medical research indicates that the human brain does
not distinguish between physical and emotional pain. Both sensations
travel the same nerve pathways and are processed by the brain almost
This is why people with chronic pain, like
fibromyalgia, often suffer horrendously from depression. It’s not their
fault (as we may be quick to judge); it’s their brain’s coping
mechanism dealing with strife of both kinds, physical and mental.
- Chronic-Fatigue Paper Called Into Question Wall Street Journal - 5-31-11
of the journal Science have asked the co-authors of a 2009 paper that
linked chronic fatigue syndrome to a retrovirus called XMRV to
voluntarily retract the paper.
- One Woman’s Answer to Chronic Pain Management - How Therapy and Support Helped the Hurt by Fran Smith, Special to LifeScript - 5-20-11
of saying you’re worthless, you look inside and find what’s worthwhile.
It’s not just changing your thoughts but learning skills to help
yourself – how to pace yourself, how to ask for what you need, how to
look for warning signs of a flare up. " - Gwenn Herman
- Understanding “Invisible” Disorders Georgetown Univ Medical Center News - 5-16-11
Article interviews Washington DC researcher Brain Walitt, MD, and group member Nancy Ryan.
- Cause for concern Nature, Editorial - 3-17-11
Scientists studying diseases should be motivated by patients, but not led by them.
- New research rattles hopes for many patients with chronic fatigue syndrome Chicago Tribune, Trine Tsouderos - 3-17-11
Retroviral link to debilitating illness looking shaky, but critics still bank on anti-HIV drugs
- Virology: Fighting for a cause Nature, Editorial - 3-16-11
Judy Mikovits found links between chronic fatigue syndrome and a virus,
the world took notice. Now, she's caught between the patients who
believe her work and the researchers who don't.
- Studying a Fatigue Illness (1 Letter) NY Times, David Tuller responds- 3-14-11
- Amid War on a Mystery Disease, Patients Clash With Scientists Wall Street Journal (Front page!), Amy Docker Marcus - 3-12-11
clashes between patients and scientists come as science in general
becomes more polarized, according to a study published in the Journal
of Risk Research last year. Researchers found that when scientists'
conclusions conflict with a community's cultural values, people don't
accept the scientific consensus. "The phenomenon we are looking at is a
cultural war over facts," says Dan Kahan, director of the Cultural
Cognition Project at Yale Law School, who co-authored the study last
- Troubles with CFS Start With Defining It NY Times, David Tuller - 3-8-11
article describes why the selection of patients for research studies,
which depends on how the illness is defined, is so critical to research
- An Illness That's Hard to Live With - And Define Wall Street Journal, Leonard A. Jason - 3-5-11
Jason, PhD, describes his experience of the illness. Dr. Jason
has been an active CFS researcher, and led the effort to create a
diagnostic definition of CFS in children.
- The Puzzle of Chronic Fatigue Syndrome Wall Street Journal, Amy Dockser Marcus - 3-5-11
writes about the experiences of Dr. David Bell (who will be speaking at
our lecture on April 16) and his patients in the small town of
Lyndonville, N.Y. The online article has a video of Dr. Bell.
- Chronic Fatigue Syndrome and Psychotherapy John Falk, The Huffington Post - 3-1-11
this brings me back to the latest round of articles and speculation
about CFS in the news. It was all triggered by a rigorous study
exploring treatment options for CFS in Britain published in the
prestigious medical journal, The Lancet. At first glance the headlines
suggested CFS is best treated with psychotherapy -- a not so subtle
conclusion that it's all a psychological condition. Upon closer
inspection, however, the study itself says no such thing. It states
quite openly that CFS, or Myalgic Encephalomyelitis (M.E.) as it is
called in the U.K., is a syndrome of various debilitating physical
dysfunctions. The thrust of the article is that CFS is best treated by
a combination of medicinal intervention, exercise, and Cognitive
Behavioral Therapy (CBT). CBT is intended to help the patient deal with
the ugly reality that they will never get better, that they are forever
changed, and that the old you is gone and the new 'CFS you' needs to be
"The problem is good luck finding a psychiatrist or
therapist who has ever worked with someone with CFS, or even knows the
symptom profile. I've seen four therapists to find an outlet for my
frustrations. Instead, I have found each time a good-natured,
well-intended professional who -- when I tell them my textbook symptoms
of CFS -- only shake their heads and say, I never heard of that. It
must be awful. Thereafter I spend my money and more importantly my
precious energy stores educating them on CFS while they in turn
struggle to fit me into a paradigm of psychological dysfunction. In the
end the only help I've ever received from a therapist, or non-CFS
specialist doctor for that matter, was to seek one who has a loved one
who suffers from CFS. It seems in this era only they know the
devastating truth and take you at your word that you're sick, not sick
in the head, which for me is the best therapy I know of right now."
- Healing the Hurt Time - 3-4-11
is protective. Don't do that, it commands — and the command is usually
a wise one. So this sensation we seek most to avoid is in fact one of
the most essential ones for our survival.
But what happens when pain
goes rogue, when it sends off false alarms so that all the sirens keep
sounding, all the cops keep coming, all the hurts keep hurting? If even
benign stimuli get distilled down to a single, primal Ouch!, then pain
ceases to be adaptive. Rather than saving lives, it wrecks them. Rather
than helping you get well or stay safe, it becomes an illness in
itself. The result: persistent, unceasing torment. .......
rethinking chronic pain as a disease, as a normally adaptive process
gone awry instead of as a symptom, may be the key to finding safer and
more effective ways of interrupting the hurt.
- Evidence surrounding Chronic Fatigue Syndrome CBS Early Show (Video Clip 2:23) - 2-24-11
Wragge speaks with CBS News medical correspondent Dr. Jennifer Ashton
about new evidence that will help doctors treat C.F.S. more effectively.
- New study on Chronic Fatigue Syndrome CBS Evening News (Video Clip 1:39) - 2-23-11
have found protein indicators that could be a result of Chronic Fatigue
Syndrome, a disease often dismissed by some medical professionals.
Michelle Miller reports on the promising study.
- The Promise of the Proteome - Analysis of the PLoS ONE paper The CFIDS Association - 2-23-11
- A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No Significant Effects Cort, Phoenix Rising - 2-19-11
- Sluggish? Confused? Vitamin B12 May Be Low Wall Street Journal - 1-18-11
deficiency is much more common than the textbooks and journal articles
say it is," says Alan Pocinki, an internist in Washington D.C., who
routinely tests his patients who fall into those categories. He also
notes that since the Metformin connection was discovered only recently,
some physicians aren't aware of it. "They assume that if patients
complain of numbness and tingling in the feet, it's a diabetes issue
and not a B12 issue."
Selected Press Releases
In the Media Pages: Directory