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"Let us not look back in anger, nor forward in fear, but around us in awareness." - James Thurber   

As Awareness Day approaches, many try to find ways to move forward. Since
there has been so little progress, sometimes it is necessary to reflect and regroup. So
start with the basics: Awareness - for what? 

CFS in any form will continue to undermine us. Mark Iverson wrote in his letter
of resignation from the CFIDS Association of America:
 "I favor and the CEO [*who at this time was Kim Kenney (McCleary)]
opposes immediately adopting a very aggressive
stance opposing the discriminatory and incredibly damaging name CFS/CFIDS
(chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome)
and I believe efforts to change public attitudes are virtually hopeless and
wasted with the present name;..."

http://listserv.nodak.edu/cgi-bin/wa.exeA2=ind0107B&L=CO-CURE&P=R1757&I=-3

 

(or Marc Iverson's resignation letter as posted to Co-Cure on July 13, 2001 ) 

How true. So why would we keep it? Myalgic Encephalomyelitis (ME) is an
actual illness, yet some are now trying to push some made-up combination,
hybrid construct as a viable solution. Half truths are more dangerous than lies.

ME/CFS is the next red herring. 

What is ME/CFS? Is it ME? Is it CFS? Is it something else? Is it the Canadian
criteria? Is it none of the above?  Usually met with stunned silence, or
with differing meanings or interpretations.

We do know what it is not: 

ME/CFS is not an actual diagnosis as there is no ICD code. 
ME/CFS is NOT a name change or new name. The only real purpose of a
name change has been to get rid of the derogatory and demeaning CFS.

And ME is not new. 

ME/CFS implies that they are the same. They are not. They have different
definitions and can select different patient populations. There may be some
overlap of vague symptoms, but they are different in nature and outcome. 

CFS was intended to be a provisional term used for surveillance purposes.
CDC states that ME and CFS are different and that CFS excludes
neurological illness; thus it excludes ME. If CFS excludes ME, how does
ME/CFS or CFS/ME make any sense whatsoever, scientifically or even logically? 

Everyone has their own meaning and understanding of what ME/CFS means,
or should mean, or believe it will mean. (*The Canadian Criteria is not an ME
definition but has features of both.) There are numerous
- and differing - explanations that flood the internet: what it is, the prevalence etc.

Within the same article there are often different terms and references:

"ME patients"  or "ME/CFS studies" or "CFS research" and often
switch back and forth. 

And there's CFS/ME, but do not dare confuse this with ME/CFS!

And of course we always must proclaim that CFS is not "chronic fatigue!" 

Yet we have resource centers and petitions and even paid advertising
using and promoting this confusing, undecipherable gibberish.

Then we  muster the requisite outrage and handwringing when the
"dumb" doctors or journalists or even the general public don't get it or
get it wrong. 

Throwing everything into some ME/CFS pot will not help anyone but will
continue the misunderstandings and confusion and will be open to the same
interpretations or misinterpretations that we've had all along. 

Having a valid diagnosis (which uses established terminology and definitions)
that describes a homogeneous patient cohort for research purposes is critical. 

We have never had this, and there are groups/advocates that still try to deny, ignore
and even actively try to prevent this from occurring. Groups continue to spring up, but still
perpetuate the ME/CFS myth (and even faux "ME" groups that do the same),
evoking this as some false forced unity while banning and censoring those who
refuse to conform. 

The different definitions and names and usage have caused the vast
majority of the problems with the stigma and trivialization, and the broad
and varied definitions create the differing and conflicting research results.
Studies almost never specify what definition was used or how patients
were selected so we never really know what or who was being studied.
This is sloppy, unscientific and it is time to put a stop to it. Unfortunately,
it is up to us, as our organizations and even professionals have failed us
miserably. 

Those with ME want a valid diagnosis of ME (not combined or connected to CFS)
that can be recognized and diagnosed now, not another artificial creation
or at best watered down combination that can be broadened, redefined etc.
Whatever the rest or whenever the cause is proven can be sorted out later. 

We are on our own and require a true grassroots effort. Contact HHS and
cc Congress and continue to educate the media. True ME
advocates have no reason to attend the CFSAC meeting (at the last meeting,
Dr. Hanna stated that people were requesting that ME be recognized
independent of CFS). 

Be clear that ME needs to be recognized as originally defined and described
and that these groups do NOT represent ME!

Jill McLaughlin

For more information on the problems with the various, conflicting names
and definitions, see:

http://www.hfme.org/whobenefitsfromcfs.htm

CDC - CME: A Primer for Allied Health Professionals (WB3151): Chapter 1.1 - Chronic Fatigue Syndrome

www.cdc.gov


A CALL FOR ACTION: THE RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING DISEASE

http://www.petitiononline.com/MEitis/petition.html

View signatures:

http://www.petitiononline.com/mod_perl/signed.cgi?MEitis