New Definition Will Emphasize Five Defining Symptoms

  NEW NAME:    SEID CHOSEN AS NEW NAME BY IOM  

Ellis:   "Not Perfect", But "Progress"


  Lipkin/Columbia Univ.:   "Unequivocal Evidence"

Wall Street Journal:  Immune Profiles in CFS Distinct, Disabling

  New York Times:  Findings May
Lead to Diagnostic/Research Tool

 Chronic Fatigue Syndrome
(CFS) News
 Features
  KITEA:    IOM DELIVERS POSITIVE REPORT

Author Tompkins:  "Ticks the Boxes"

Washington Post:   CFS Definitions Muddy The Water, As New Research Offers Hope

Face the Nation:  'Unbroken' Author Speaks of Book, Personal Struggle

CFS Linked to Unique MRI Abnormalities and Inflammation:  Stanford

Protest at Bethesda

Miriam Tucker Details CFS Research:   Wrong Name, Real Illness

Were HHS Efforts in 1994 to Redefine CFS An Effort to Make a Distinct Ilness "Evaporate"?  

US District Court:   NIH Violated Federal Laws in Withholding CFS Documents

ABC News:   Enterovirus Link To Be Explored 

Massey University Study:   CFS Carries a High Personal Cost

Llewellyn King:  Waiting for an Awakening?

Author Hillenbrand Speaks To 'Elle' Magazine About Life with CFS

 Unique Antibodies Found in Subset of CFS Patients:   Ohio State

   Discover Magazine:   Could B Cells Be the Cause of CFS?  

 Harvard Student Speaks Out About Severity Of "Devastating Disease"

Tuller:   Federal Funding for Immunological Breakthroughs Lags

A Disease Like No Other:   The Personal Costs of CFS

   
   Columbia University:  Distinct Immune Profile Explains Disabling Symptoms of Early-Phase SEID, Immunoregulating Drugs In Works





MAUPIN:   WHY THE IOM COMMITTEE MADE THE RIGHT MOVE

Today, the IOM delivered news that the defining features of the illness must be present in the definition and name, a move that was heralded as a positive step by many CFS clinicians and patients.  








 
 
  

 Short Takes 

June 2015

A Friend of the CFS Community, Dr. Les Simpson, Passes

The CFS community lost one of its champions recently when Dr. Les Simpson passed.    Dr. Simpson, a pathologist from New Zealand, worked on circulatory abnormalities in ME and CFS long before such research became commonplace.  Having spoken and interacted with Dr. Simpson, he was a class act and generous man in every way.    Les Simpson will be missed, but never forgotten.  

Is the HHS Sticking with CFS and Fukuda?

After the unexpected surprise that the IOM Report on CFS was thorough and true to the science, attention shifted to the HHS response to the report.    The response from the HHS --  or non-response --appears to be a disappointment so far.   Though the HHS claims it is waiting for the release of the P2P report early this summer, one can't help but wonder if some of the higher ups at the health department simply see the IOM as a report as a report best ignored.    Opportunity lost once again. 

Right idea?   Wrong guy?  

The World Health Organization recently made a splash with a program to ensure names, terminology, and public policy for diseases are sensitive to the populations they serve.

WHO Guidelines for protecting populations from harmful terms

  The concept behind the program is a good idea, of course, but I'll just be blunt and say I have a problem with the bureaucrat chosen by the World Health Organization to lead the effort -- Keiji Fukuda.   While at the CDC, Keiji Fukuda had every opportunity to put principles of science and concern for the public into play when it become clear Stephen Straus intended both the term "fatigue syndrome" and the "Fukuda definition" to elimination consideration of CFS as a serious and distinct disease.  These goals were not a proper use of authority then, and even worse, they were anti-science.  Simply put, my belief is Keiji Fukuda participated in the use of public policy to steer scientific outcomes toward harsh personal attributions that had taken root within the HHS toward people with this illness.   The damage done and the HHS and Fukuda wasn't benign, and that damage affects people with CFS/SEID/ME every single day in numerous ways - -clinically, socially, financially, and medically.  

Personal attributions and intentions surface behind CFS term and definition

  I can't help but feel the person the WHO chose to lead a program on "sensitive naming of illnesses" is a man who is trying to rewrite the history of the decades of damage done to millions of sufferers of one of the world's harshest diseases.    And, for this observer, such efforts are not effective, to say the least.

 
 Series >   Research   Personal Stories
Full list of Series on the Archives Page

Advocacy Ruts 
1 2 3 4 5

A Disease Like No Other
1 2 3 4 5

Shaky Foundation
1 2 3 4 5

CFS at the NIH
1 2 3 4 5

Interview with Dr. Vivian Pinn, Director of ORWH at the NIH

International Consensus Case Definition To Be Published

OP/ED:    Common Language Spoken At CDC's Stakeholder's Meeting In Atlanta

 

CFS:  Author Finds Beauty and Meaning in the Life of a Snail

Author Escapes Illness with Stirring Seabiscuit

Hillenbrand Discusses  CFS

Skloot's essays, poems make waves







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