Wednesday, December 14, 2011

CFS - ME Conundrum


It is often said that the illness M.E. (Myalgic Encephalomyelitis) is
"also known as" Chronic Fatigue Syndrome" (CFS). Further, that CFS is
preferred by doctors, while patients would rather have M.E, because they
believe it implies a more serious illness, though this is not borne out
by the number of patients who do use CFS.

The terms are commonly written as the hybrid CFS/ME and, in this order
rather than ME/CFS. This produces a conundrum, which is worth trying to
unravel, in order to see why there has been so little progress in
understanding M.E. If CFS and M.E. are identical, synonymous and
interchangeable and CFS is preferred, why not drop M.E. altogether,
since nothing would be lost? "M.E." never passes the lips of some
influential doctors and researchers, such as Dr Esther Crawley and
Professor Simon Wessely; even when asked about M.E., they reply with
CFS. One theory is that, if ever an indisputable diagnostic test were
discovered for M.E., they would have to admit to having backed the wrong

As long as M.E. is retained, either independently or as part of CFS/ME,
there is a separate identity, or perhaps identities, if either or both
are plural terms. If CFS is a plural term and M.E. is one of its
syndromes, which are the others? I have never heard of another condition
being obliquely attached to CFS/. Again, if CFS is plural and CFS and
M.E. are the same, then M.E. must also be plural but, if it is, I have
not heard of any subsets - not degrees of severity, subsets - said to be
subsumed under M.E. unless one reverses the terms to ME/CFS - but then
are we not faced with the same dilemmas as with CFS/ME? So, of the
choices of definitions and singularity or plurality, which do
researchers and representatives choose? We can find evidence of all of
them: CFS/ME ("the chronic fatigue syndrome - ME" - Sussex&   Kent ME/CFS
Society); CFS, singular, ("This illness ..." Dr Esther Crawley "cost of
CFS to UK economy" study and elsewhere); synonymous, ('When we use the
words, CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), what we
mean is Myalgic Encephalomyelitis (ME).", Gail Kansky, National CFIDS
Foundation) and any (An earlier version on Phil Parker's website that
they called all illnesses such as CFS, PVFS and Fibromyalgia the same
name M.E. has now been amended to that they get similar results when
given the Lightning Process, whatever they are called).

In the absence of an agreed diagnostic test, such as a blood test or
scan, there are different diagnostic criteria that have been suggested,
including Fukuda, Oxford, London, Canadian Consensus, Nightingale and
NICE Guidelines. To compound the problems of experimental design
further, all of these have been used in different studies, sometimes
more than one in the same study, making comparisons impossible.

With such lack of experimental controls, including bias in the subjects
sampled as severely affected people cannot travel to take part, the
statistics are bound to be distorted, since there are likely to be many
more with CFS than M.E.; conclusions deduced from CFS, cannot be applied
to people with M.E., since there may have been few, if any, in the
sample studied and recommendations for treatment, which may be
beneficial to some with CFS, may be ineffective or even harmful for M.E.

This Research Psychologist, diagnosed with Myalgic Encephalomyelitis in
1988, believes that it is possible to identify a more "pure" group of
M.E. sufferers, without the variables "fatigue" - which even its
advocates admit is "heterogeneous", "ubiquitous" and "nebulous" - and
its bookends "chronic" and "syndrome". Until these contaminating
variables are eliminated we shall make no progress with a discrete
illness which has a physiological cause and underlying disease process
that continues to devastate the lives of millions of people worldwide.

Yours sincerely
M.E. Community Trust. org
* * *
My initial diagnosis was "Post Viral Syndrome", and a few months later CDC required that set of symptoms to be called CFS.  I've never had the ME diagnosis, and unless I see a new doctor, I never will, even though it's obvious that what I have is ME and not merely some vague fatiguing condition.

1 comment:


CFS + ME + AIDS = One Catastropic Epidemic (not caused by HIV)

CFSgate is AIDSgate.