Thank you kjm.
Supposing the IMEA's "Gethin Price" were Gerwyn Morris.
We do not know whether Gerwyn posts under his own name, anyway.
We do not know whether the name "Gethin Price" is a real name.
I would expect transparency from anyone who promotes themselves as a "Director" of an "International ME Association" that is claiming a mandate to represent patients' interests at meetings.
So let's give IMEA the benefit of the doubt and assume, until told otherwise, that Gethin Price is a real person.
The website of IMEA has a page devoted to quotes from "Gerwyn" - not "Gerwyn Morris" but "Gerwyn".
But it does not clarify whether "Gerwyn" is the pen name under which IMEA "Director" "Gethin Price" publishes.
So if someone takes issue with the content or accuracy of "Gerwyn's" material that is up on the IMEA site (or subsequently republished elsewhere) with whom does one take this up?
With "Gerwyn Morris" or with "Gerwyn" or with "Gethin Price"?
There are no contact details for the "Directors" of IMEA on the website or the notices, other than Patricia Carter.
As I've already set out, the only names on the site are those of the "CEO", Carter and quotes attributed to "Gerwyn".
You see how complicated things get once you become involved in a patient organisation?
This is beginning to look like a ragtag set up
It is evident that this "organisation" does not have a good understanding, for example, of the history and status of CDC/HHS/NCHS proposals for the US specific ICD-10-CM.
There may be a conflict of position if IMEA is calling for the "eradication" of the term CFS but attempts to discuss with CDC the issue of moving CFS from the R code chapter (Symptoms and signs, and ill-defined conditions) to the Chapter 6 G codes, where ICD-10-CM proposes to code PVFS and (B)ME.
[Current proposals for the US "Clinical Modification" of ICD-10, which will be known as "ICD-10-CM", are to retain CFS in the R codes and code for "Chronic fatigue syndrome NOS" in Chapter 18 "Symptoms and signs" under
R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified > Chronic fatigue syndrome NOS but to classify PVFS and (B)ME in Chapter 6 Diseases of the nervous system, under G93 Disorders of brain > G93.3 with the specific Exclusion of "chronic fatigue syndrome NOS (R53.82)". This would place ICD-10-CM out of line with the existing Canadian "Clinical Modification", ICD-10-CA, where all three terms are classified in Chapter 6 at G93.3, and with proposals for international ICD-11, where all three terms are proposed to be classified within Chapter 6.]
One questions whether this "organisation" of scattered across the globe "Directors" can be considered competent to represent the interests of patients.
I note from Co-Cure, today, further concerns about this "organisation":
From: "Pat Sonnett"
To: <CO-CURE@LISTSERV.NODAK.EDU>
Sent: Tuesday, March 22, 2011 2:55 PM
Subject: [CO-CURE] ACT: Write to the IMEA
The International ME Association (IMEA) is in the process of scheduling
a meeting with Dr. Elizabeth Unger at the CDC and is soliciting patient
input regarding questions to be answered during the meeting. One of the
questions posted on the site at
www.imeassoc.com/IMEA_to_meet_with_CDC.html includes the sentence
"Patients do not want the CAA biobank samples used in studies.
Regardless of how one feels about the CAA, its BioBank is composed of
ME/CFS patient samples from Dr. Lucinda Bateman, Dr. Stephen Gluckman,
Dr. Nancy Klimas and Dr. Charles Lapp, highly respected pioneers in the
ME/CFS field. These patient samples could provide valuable information
for research and to specifically ask that they not be used would be a
disservice to the ME/CFS community. We all want to get well and
excluding these samples would only serve to impede our progress.
Please write to the IMEA at
info@imeassoc.com and ask that the statement
"Patients do not want the CAA biobank samples used in studies." be
removed from the questions/statements to Dr. Unger and the CDC.
Pat Sonnett
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Suzy