Author Tompkins:  "Ticks the Boxes"

New Definition Will Emphasize Five Most Defining Symptoms

  Nature.com:   IOM Panel Redefines, New Name SEID

  KITEA:    IOM DELIVERS POSITIVE REPORT

  NEW NAME:    SEID CHOSEN AS NEW NAME BY IOM  

Ellis:   "Not Perfect", But "Progress"


HHS Lack of Response Next Looming Issue?

 Chronic Fatigue Syndrome
(CFS) News
 Features
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

   
   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 

February 2015

The new definition is here, unveiled at a. press conference on February 10, 11 am.    The new name and definition, I believe, are a positive step and a best-effort to come up with a more solid-long term definition and name for this disease.  

The new term for the disease is SEID -- Systemic Exertion Intolerance Disease.  Many are pronouncing it Ess - Eh- Eye - Dee.   Though somewhat awkward, is more accurate than existing names and will help pinpoint the main defining characteristics of the disease. 

The definition lists 3 criteria: 

1)  Substantial reduction or impairment in previous activities for 6 months

2)   Post exertional malaise

3)  Unrefreshing sleep

As well as one of the two following:

1)  Cognitive Impairment

2)  Orthostatic Intolerance (ability to remain upright without becoming fatigued)

The strategy appears to break with past failed attempts to encourage fibromyalgia, pain, and other fatiguing illness research and treatment to occur within the CFS rubric -- an approach I agree with.

 The name and definition must be accepted and utilized -- by public and most importantly, leaders at the HHS--- if it is to succeed.   If not, the derogatory and all-encompassing "fatigue syndrome" may live on; so there is much to yet be determined.  

What happens in the coming year, particularly with the health department's choices in regard to changing to the new name and definition in regard to their websites and public materials will be crucial in determining where this will all go.   

 

                       Best wishes to all,

                                        Craig Maupin  

 

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

Advocacy Ruts 
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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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