ME - The New Plague 2
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RECLAIMING THE PATIENT'S VOICE
STRIPEYSOCKS BLOG (not part of the book!)
Blog
THE CLINICAL IDENTITY OF MYALGIC ENCEPHALOMYELITIS
| Posted on February 25, 2015 at 9:38 AM |
 THE
CLINICAL IDENTITY OF MYALGIC ENCEPHALOMYELITIS Not
many people will have missed the hoohah about SEID - Systemic
Exertion Intolerance Disease - as a proposed new name for ME/CFS.
You'll be relieved to hear, this is not going to be a dissection of
the IOM report. That's not what I'm writing about. I'm
going to write about ME, and about why, no matter how many names
people come up with for the composite 'CFS', ME itself remains what
it always was. Myalgic Encephalomyelitis. Well defined by Melvin
Ramsay back in the 20
Century. A discrete disease, and not exactly what we would call
“benign” (a prefix that was originally attached). It's
six months since I posted here on my Stripeysocks blog (as you see, I've broadened my remit to include Spotty Socks when available... ). Thanks for
the messages asking me to post again. The reason I was away was
simple. Myalgic Encephalomyelitis. As those of you with ME will know,
even if you're much recovered, the chances are that you still have to
pace yourself. So do I. 2014 was Tymes Trust's 25
Anniversary Year. That was demanding so much of my energy and time
that something had to give. It's good to be back. Sitting
beside me is a copy of Melvin Ramsay's monograph: The
Clinical Identity Of The Myalgic Encephalomyelitis Syndrome (second
edition). If only
the medical establishment had properly adopted his clear description
of ME back then, we might never have suffered the indignity and
nonsense that is Chronic Fatigue Syndrome, nor rushed willy nilly
down that blind alley. “It
is fortunate,” he
writes, “that a
second edition of my monograph affords me the opportunity to
demonstrate that the clinical features of Myalgic Encephalomyelitis
provide a sharp contrast to all other forms of postviral fatigue
syndrome.” So
there you have it. A “sharp contrast” to ALL other forms of
postviral fatigue syndrome. Anything
that does not display the clearly defined features of what I have
myself referred to as “classic” ME (I'm glad to see how popular
that adjective has become) is simply not
ME. It is something
else, and deserves to be properly diagnosed in its own right. All
this muddled thinking that CFS has engendered has led to patients
with genuine ME getting mixed with patients who have something else.
No illness can be accurately diagnosed while all are labelled CFS -
or worse, chronic fatigue, a symptom of multiple diseases. Many of
you will know that I've written about this issue since the 1990s. It
can't be repeated too often. People have been short-changed, fobbed
off, and some even put in serious danger by being given inappropriate
therapies, or having what was cancer labelled as fatigue. Here
is what Melvin Ramsay wrote. It could hardly be clearer. The
clinical identity of the Myalgic Encephalomyelitis syndrome rests on
three distinct features, namely: A.
A unique form of muscle fatiguability whereby, even after a minor
degree of physical effort, 3,4,5 days or longer elapse before full
muscle power is restored. B.
Variability and fluctuation of both symptoms and physical findings in
the course of a day. And, C.
An alarming tendency to become chronic. He
goes on to contrast this with flu. “If
we take the well known condition of post influenzal debility as an
example of a postviral fatigue state we see that in all these
particulars it constitutes a complete contrast. The fatigue of post
influenzal debility is part of a general debility with no
distinguishing characteristic of its own, it shows no variation in
intensity in the course of a day and although it may last weeks or
even many months, it has no tendency to become chronic.” Once
you mix different
forms
of postviral fatigue together you end up with doctors who can't
understand why a child diagnosed with CFS can be severely ill for
years. They make extraordinary statements like “You've been ill for
too long,” and call in psychiatrists and social workers to probe
the family and the child's mental state. They may be accustomed to
seeing more common types of postviral debility, quite likely under
the label of chronic fatigue, and simply don't know that in with
those there will be cases of the 'real thing', the genuine article,
ME in all its variability, potential severity and chronicity
(duration of illness). On
chronicity, Melvin Ramsay writes of the “alarming tendency” of ME
to become chronic. This is “the final distinguishing feature from
all other forms of postviral fatigue syndrome”. At
the time of writing, he knew of people who had suffered with ME for
over forty years. He states, unequivocally: “I am fully satisfied
that at a conservative estimate 25% of victims of M.E. have had the
disease for 10 years or more. Only Myalgic Encephalomyelitis has such
a legacy.” Finally, he comments on the “recurring cycle of
remission and relapse”, and on “tragic” cases that do not
remit. Given
these sobering facts, it must surely be obvious to anyone, lay or
medical, that we must allow children with ME, and adults too, to
convalesce and recuperate in a genuinely conservative manner that
supports the body's own healing mechanisms. The last thing we should
be doing is pushing the body before it has healed enough to do what
is being demanded. I
said I wouldn't write about SEID but I will say this: to be diagnosed
with SEID, the patient must exhibit an intolerance to effort. That in
itself narrows things down. If the definition requires that effort
makes the patient worse, we're coming closer to ME itself. The IOM
committee quite rightly panned the term 'fatigue' and also replaced
'syndrome' with 'disease'. SEID might fly as a replacement for the
hated 'CFS', but it's still not classic ME. Both I and Tymes Trust
will continue to refer to ME to distinguish it from other diseases. I
don't think I'm breaking a confidence to say that I'm expecting some
new evidence of the type of neurological damage caused by
inflammation in ME to become available during 2015. Given that the
IOM committee will review in five years, by which time there may be
more revelations, I find it very unlikely that there won't be - even
in their opinion - sufficient evidence of inflammation for them to
agree: Myalgic Encephalomyelitis ('itis' meaning inflammation) was an
appropriate name all along. Footnote:
Those of you who've been reading the episodes of my book will know
that it's the close relation between ME and polio that I focus on
there. Jane Colby STRIPEYSOCKS BLOG www.methenewplague.net |
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