Appropriateness of ME name

The basis for the name, Myalgic Encephalomyelitis, is documented and
clear.  No need to wait with the "-opathy" tagged on nor for the delay in moving
the US to an acceptance of the WHO destination & ICD code in G 93.3.


1.  Eileen Marshall and Margaret Williams excellent article at
M. E. Action UK entitled: "Note on the term "Myalgic
Encephalomyelitis" 16th October 2004.  This
excellent summary, which includes a number of scientific references,
begins like this:  "Despite the relentless financial, psychosocial and
political engineering that seems to underpin the current determination
to remove the term "myalgic encephalomyelitis" (ME) from the medical
lexicon (where, based on accurate published evidence of the nature of
the disorder, it has resided for the last half century), the present
proponents of its demise have failed to produce any evidence-base
to support their clamour for its removal and its replacement by the
less specific term "myalgic encephalopathy".

Such intentional dilution of terminology is puzzling, since it is
clearly not the case (as they proclaim in support of their favoured
term) that there is no published evidence of inflammation of the
central nervous system (CNS) in ME / ICD-CFS  --- see for
example "Prevalence in the Cerebrospinal Fluid of the Following
Infectious Agents in a Cohort of 12 CFS Subjects:  Human
Herpes Virus-6 and 8, Chlamydia Species, Myco[plasma
Species, EBV, CMV and Coxsackievirus"   Susan Levine MD.
JCFS 2001:9 (1-2):41-51"

Complete article here:

http://www.meactionuk.org.uk/Note_on_the_term_ME.htm

2. The information cited by Dr. Malcolm Hooper in this article

at the website below the article.

"The Terminology of ME & CFS By Professor Malcolm Hooper"

http://www.investinme.org/Article%20010-Encephalopathy%20Hooper.htm

3.   Autopsy results revealing inflammation of the spinal cord and brain
tissue:

Dr. Hyde relates that it was obvious to Dr. Melvin Ramsay in UK & Dr.
John Richardson in Australia that they were dealing with the consequences
of an epidemic and endemic infectious neurological.

As M.E. expert Dr Byron Hyde MD writes:

"The reason why these physicians were so sure that they were dealing with
an inflammatory illness of the brain is that they examined patients in both
epidemic and endemic situations with this curious diffuse brain injury. In
the epidemic situation with patients falling acutely ill and in some cases
dying, autopsies were performed and the diffuse inflammatory brain
changes are on record" (2006, [Online]).


4.  Inflammatory activation shown in immune profiles such as TH1/TH2
Cytokine Production (Immunosciences)---Interferon Gamma Production
(TH1) over-activation indicates inflammatory activation).

Also, IL-10 (TH2) overactivation indicates fighting inflammation.

Some patients appear to have an over activation
of the anti-inflammatory (Th2) branch and an under activation of the
pro-inflammatory (Th1) branch of the immune system. This could
cause increased rates of allergy and sensitivity on the one hand and
difficulty fighting off pathogens on the other.

Further explanation from Dr. Cheney:
http://www.anapsid.org/cnd/diagnosis/cheneyis.html

***New development:
A new test to show chronic low-grade inflammation is now
available as a recent post by Margaret Williams reports:
http://www.meactionuk.org.uk/Essential_investigations_for_people_with_ME.htm
Here she noted information from a conference reported by Fred
Springfield about a new test that could indicate this to further the
evidence for the last part of the name, -itis, in Myalgic Encephalomyelitis.
Here is a small portion from the post:

"Identification and treatment of symptoms associated with inflammation in
medically ill patients"; Robert Dantzer et al; Psychoneuroendocrinology
2008:33:18-29).  The Review was the result of a meeting on 28th and 29th May
2007 in Bordeaux, France, on inflammation, psychiatry, neurosciences and
psychoneuroimmunology, attended by experts from the US, France, the UK and
Israel.
    As noted by Fred Springfield, whilst not relating specifically to
ME/CFS, the Review may nevertheless be of interest to the ME/CFS community, whose
members may be aware that there is evidence of low-grade (but still
important) inflammation in ME/CFS -- see, for example, "Low grade
inflammation and arterial wave reflection in patients with CFS"; VA Spence
et al, Clin Sci 2007, Epub ahead of print: doi:10.1042/CS20070274, which
contains 54 references and demonstrates that, despite the recent reporting
that markers of post-infective fatigue syndromes are not sustained into the
chronic phase of the illness and play no role in persisting symptoms, hsCRP
levels in (ME)CFS are indeed indicative of chronic, low-grade, sub-clinical
inflammation. (Within the last ten years, researchers have developed a high
sensitivity immunoassay known as hsCRP, which is a much better assay and a
more sensitive marker than CRP, as it can measure levels below 10mg/L.
Whilst some clinicians may still regard low levels as unimportant,
nevertheless at these levels, measurement of conditions indicative of
chronic, low-grade inflammation are now possible)."


Historical note:

A physician from California, ERICH D. RYLL, M.D.,
Assistant Clinical Professor of Medicine, Division of infectious &
Immunologic Diseases, Department of International Medicine, University of California Davis, California, who found this in his investigation of the 1975
outbreak as well as subsequent patients:

"In all of you I find evidence of inflammation of deep veins."

Dr. Ryll  explains: "In the spring and summer of 1975, there was a major,
severe epidemic of a communical, apparent viral disease at the Mercy San
Juan Hospital in Carmicheal, a suburb of Sacramento, California. It occurred
in February, and the bulk of the disease happened between July and November
of 1975. Cases continued to occur, although few, until 1978."

His name for the disease to particularize it & his description:

"Infectious venulitis (IVN) is a disease caused by an as yet unidentified
virus.
This disease begins by an influenza-like onset with headaches, sore throat,
fever, dizziness, runny nose, congested head, nausea, vomiting, muscle
aching, extremity pain, and other features. Unlike ordinary flu, however,
this initial phase of IVN can last as long as a year and longer without let
up.
During this initial flu state, that I call a flu-storm because it lasts so
long in many patients, sufferers are very drowsy at times - almost in a
lightcoma. The extremity discomfort is often described as a burning, searing
sensation.
Joint pains can be severe in some cases, patients have frequent bruises
for unexplained reasons and swollen, painful veins.

After the initial flu state leaves, the patients are still
not well. They have a constant plateau of illness punctuated by unpredictable relapses."

http://www.med-help.net/ME-CFIDS.html

Steven Du Pre
Poetry website: http://www.angelfire.com/poetry/soareagle/index.html
"By words the mind is winged."  Aristophanes
Website for National Alliance for Myalgic Encephalomyelitis:
http://www.name-us.org