Thursday, November 25, 2010

Patient Safety Is Not Improving in Hospitals, Study Finds

"The study, conducted from 2002 to 2007 in 10 North Carolina hospitals, found that harm to patients was common and that the number of incidents did not decrease over time. The most common problems were complications from procedures or drugs and hospital-acquired infections."
"medical mistakes caused as many as 98,000 deaths and more than one million injuries a year in the United States"
"instead of improvements, the researchers found a high rate of problems. About 18 percent of patients were harmed by medical care, some more than once, and 63.1 percent of the injuries were judged to be preventable. Most of the problems were temporary and treatable, but some were serious, and a few — 2.4 percent — caused or contributed to a patient's death, the study found."
"For the most part, the reporting of medical errors or harm to patients is voluntary, and that "vastly underestimates the frequency of errors and injuries that occur," Dr. Landrigan said."
* * *
If most injuries are preventable, then why does medical malpractice reform focus on preventing patients from suing, rather than preventing doctors from making the mistakes that cause them to be sued?
Dr. Groopman's book "How Doctors Think" makes it clear how many of these errors occur, and a primary cause is doctors who don't listen.  As we advise every patient looking for a CFS diagnosis, once you say "fatigue" the doctor is going to tune out everything else you say because he's just leapt to the conclusion you're depressed.
Of course, not saying "the F word" isn't foolproof -- I fed the doctor every symptom that proved it was not depression, and because I was a divorced middle-aged woman, he was sure it was depression.  When confronted on the incongruity, he announced that "nothing you said made sense" -- it wasn't *his* fault for making the wrong diagnosis, it was *my* fault for not telling him that I had the symptoms that supported the misdiagnosis!  Yes, a doctor who changes a correct diagnosis to an incorrect one should be sued.  It's now a matter of public record that he doesn't listen.

Wednesday, November 24, 2010

CDC's CFS Program Leadership Criticized

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Special Edition


Dedicated to research, education,
treatment and finding a cure fot ME/CFS



10th International IACFS/ME Conference
Translating Evidence into Practice

September 22-25, 2011
Crowne Plaza Hotel, Ottawa, Canada
Hosted by the National ME/FM Action
Network of Canada

IACFS/ME will begin accepting abstracts
for (a) oral presentations (b) poster
sessions; and (c) workshop proposals on
January 2, 2011.  Further information will
follow in December.


October 13, 2010

CDC/CFS Program
Leadership Criticized in
Public Testimony
Presented to the CFS
Advisory Committee

As president of the IACFS/ME, an
organization of over 500 biomedical and
behavioral professionals, I thank the CFS
Advisory Committee for this important
opportunity to present testimony.

Several weeks ago, the Centers for Disease
Control issued a job announcement for
Chief, Chronic Viral Diseases Branch.

This includes primary responsibility for the
direction and substance of the CFS research
program. The program contains the largest
single US budget for CFS research ($5

This is a critically important position that
can influence science, practice, and health
policy related to CFS.

As such, we need a highly qualified
individual to fill the position. According to
the head of the search committee at CDC,
several candidates will be recommended for
further consideration.

A new chief will probably be appointed in
the next several weeks.

Apart from the necessary scientific
credentials, I would like to excerpt a key
job requirement from the job

----The ability [of the candidate] to deal
effectively with the scientific community,…
national and international health-related
organizations, and the public at large.

This critical dimension of leadership has
been and still is lacking at the CFS program
at CDC.

To date, the leadership of the Chronic Viral
Diseases Branch has conveyed an attitude
of dismissal bordering on arrogance toward
the external scientific and professional

This attitude has generated mistrust and
skepticism of the CFS research program – a
mistrust which has been ongoing for the
past decade.

IACFS/ME would like to see the position of
Chief filled by someone who constructively
engages with the scientific community.

This important ability would preferably
include a shared vision of the direction of
biomedical research in CFS---

particularly in the challenging new domains
of retrovirology and molecular medicine.

These emerging areas of scientific inquiry
may lead to new models of intervention
that can offer hope and help for long
suffering CFS patients.

Overall, we need open communication with
the CDC/CFS program and fresh
perspectives from their leadership--the
qualities that could elevate this position to
one that is viewed with renewed respect
and credibility.

In keeping with the stated job
requirements for the Chief, Chronic
Viral Diseases Branch, IACFS/ME
recommends the following:

      1.   All candidates should be
      required to demonstrate their
      past experience and future
      potential to deal effectively with
      the external scientific community
      -- especially professional
      organizations which look to the
      CDC for enlightened leadership
      and scientific progress.

      2.   When appointed , the new
      Chief should post a statement of
      intent on the CDC website with
      the following objectives:

      -- to develop cooperative
      relationships with the external
      scientific community.

      -- to be open to external input in
      the planning and implementation
      of studies relevant to CFS.

      -- to publish detailed abstracts of
      their planned and ongoing CFS
      research in order to inform the
      scientific community and other

      3. The CFS program should
      schedule regular meetings with
      scientists and clinicians in order
      to develop productive
      relationships on research and
      clinical management issues.

      Such regular meetings were part
      of the CDC's 5 yr. research plan.
      It's now 18 months since the
      release of the 5 yr. plan and no
      such meeting has been held.

      4. Finally, the CDC should initiate
      an extramural grants program so
      that independent labs can
      generate innovative research that
      complements CDC-based studies.

These recommendations are consistent not
only with job requirements but also with
the Mission Statement of the CDC, which
first and foremost emphasizes collaboration
and partnerships to create the expertise,
information, and tools that communities
need to protect their health.

TheCDC mission also pledges to the
American people to treat all persons with
dignity, honesty, and respect.

In sum we ask that the candidate selected
to head the CFS program be prepared to act
in accordance with the CDC's own mission
statement as well as the job's
requirements: that is, to demonstrate the
important ability to deal effectively with
the scientific and professional

Thank you,

Fred Friedberg, PhD

Monday, November 22, 2010

Chocolate may ease CFS Symptoms

(Provisional) Full text (free) at:

Final full text will be at:

High cocoa polyphenol rich chocolate may reduce the burden of the symptoms
in chronic fatigue syndrome

Author: Thozhukat Sathyapalan Stephen Beckett Alan Rigby Duane Mellor
Stephen Atkin

Source: Nutrition Journal 2010, 9:55
News we can all live with!

Sunday, November 21, 2010

Want to publish a story about one person's experience with CFS?

A healthy first for crowd-sourced journalism in Australia

November 20, 2010 – 4:12 pm, by Melissa Sweet

Would your organisation or group like to publish a story about one
person's experience with chronic fatigue syndrome? It won't cost you a

Tara Peck, Project Officer of the Public Interest Journalism
Foundation, explains more.

Tara Peck writes:

As mentioned previously on Croakey, , a news
commissioning website established by the Public Interest Journalism
Foundation, has been seeking support for a number of story pitches
since its launch at Melbourne Writers Festival on 3rd September.

This week the website published its first news story fully funded by the public.

In Search of Non-Toxic Housing for Health's Sake details the
experience of Chronic Fatigue Syndrome (CFS) sufferer, Katherine
McIntosh, who battles 'Multiple Chemical Sensitivity' (MCS) as part of
her illness. The story can be found here:

This report  is the first installment in a series of ten proposed by
Journalist Toula Mantis, aimed at highlighting the plight of those
suffering from CFS in order to raise awareness of its devastating
effects. The series, 'CFS Sufferers: Living Corpses left for dead',
was pitched on YouCommNews in late August and since then seventeen
individuals have contributed a total of $878.00 for the journalism to
go ahead.

All ten stories will be made freely available for redistribution
through a Creative Commons 3.0 licence (attribution, no derivatives).

This means that unless a registered media organisation chooses to fund
more than 50 percent of a story's cost (in which case they may opt for
first publication rights), content is made freely available for
publication by anyone as long as the work remains unchanged and is
attributed to the journalist.

Community groups, organisations or individuals wishing to republish a
YouCommNews story can contact PIJ Foundation at for
more information.

YouCommNews' community-funded model provides a platform for
Katherine's story and other important investigations to be brought
into the public domain, allowing journalists and members of the public
to pitch stories which otherwise may not appear in the mainstream