This is the first of two very similar replies from me to two similar
articles published in two different newspapers in New Zealand. Both are,
principally, about the New Year honour of the New Zealand Order of Merit
awarded to Dr Ros Vallings, which I think will be generally thought
well-deserved and I know that she is thought of highly, at home and abroad
but each article contains other elements that need a response.
The link for this article is below Dr Valling's reply to my letter below.
For anyone who can manage it, the e-mail address for this one is
lisahh@times.co.nz
I am still struggling, after weeks, against a vicious flu virus. I have
never been so ill in all my life, rarely up, washed, dressed and still with
the most dreadful symptoms that only a pact with the devil, or someone
putting me out of my misery with an elephant gun seem the remaining options.
We could not have managed without our amazing volunteers at ME Free For All
and I have had to utterly depend on a few personal friends for essentials
such as shopping, spoon-feeding chicken soup, peeling grapes, bathing in
asses milk ....
Back to full capacity when I can.
Cheers
John
*Letter to the Editor (also author of this piece)*.
Dear Lisah,
The honour of New Zealand Order of Merit (MNZM) awarded to Dr Ros Vallings (
*Friend to chronically fatigued patients, Howick and Pakuranga Times, New
Zealand, 10 January 2008 *) is thoroughly well-deserved and I add my
congratulations to those which come from the M.E. Community, around the
world, who admire her personally and for her enormous contribution.
It is one myth, born of flawed logic, that M.E. (*Myalgic Encephalomyelitis*)
is a more common illness than most people imagine and it is a second myth
that it is becoming even more common. It needs no more than common
observation to see that the first is not true. Think for a moment, of all
the people you know - friends, family, neighbours and the wider general
population - how many have M.E.? None, perhaps? One? Two, maybe? Now, of the
same population, how many do not have M.E.? Lots? Oodles? Squillions? We
don't have to be very accurate with numbers, at this stage, to see that it
is not a common illness. Yet these two myths are gaining currency, globally,
by repetition of false logic and a little prestidigitation. We may trace the
process of both in order to understand the unreliable origins of this
conjuring trick.
There is ample evidence, both *post mortem* and in living patients, for
Myalgic Encephalomyelitis (*Myalgic*, relating to the muscles; *encephalo-*,
the brain and spinal cord and *-itis* meaning inflammation). It holds good
more than fifty years after first being used by the late Dr Melvin Ramsay
and needs no other diagnostic labels foist upon it. But this is what has
happened, without justification, in the last twenty years or so and this is
why it may appear that it is becoming increasingly more common when it is
not in reality.
The illusion is created by focusing on only one symptom of fatigue, which is
especially frustrating for M.E. sufferers who protest - on deaf ears, it
seems - that, whatever is their overwhelming and omnipresent feeling of
lassitude, it is not, repeat not, a million times not, fatigue because it
doesn't present like the tiredness we normally understand and expect from
physical or mental exertion; nor is it repaired by any amount of sleep, as
fatigue is usually. Arrogantly ignoring this experience of the patient and
also the fact that the other symptoms of M.E. (including muscle pain,
swollen lymph glands, cognitive dysfunction, dizziness etc.) are not always
present in, or typical of, other illnesses, having chronic fatigue as a
principal symptom, the *Chronic Fatigue Syndrome *magicians indiscriminately
bundle them all together under the same umbrella of CFS.
Now, although adding all these clinically and symptomatically different
illnesses together obviously increases the total number of patients under
the newly-invented term CFS (just as adding apples + oranges + bananas etc.
= more total *fruit*, the generic name for all, in the basket), we should,
nevertheless, maintain the correct number for each discrete illness (just as
the numbers of x apples, y oranges, z bananas etc. are still known
separately, even when they are considered collectively as fruit) but, for
the next part of the trick, ladies and gentlemen, the CFS magic circle now
declare that M.E. and CFS are synonymous and interchangeable and give
it/them the hybrid name CFS/ME. Theyhave created a monster.
The next sleight is to make M.E. disappear altogether by referring only to
CFS (and no longer CFS/ME), which now has the increased number of sufferers
from whatever source of chronic fatigue, whether due to any illness, or
after surgery, vaccination, chemical poisoning, or any other cause as yet
unknown. If the ugly head of M.E does ever re-appear, the audience is
reminded that, since it the same as CFS (haven't they just proved it?) and
since CFS is common and has increased in number (you saw it with your own
eyes, didn't you?) and since CFS = M.E. (We've already agreed that, haven't
we?) then - Hey Pesto! - so must M.E. be more common and on the increase.
Of course, it's a trick. It's a cruel trick for people who have M.E. *(Myalgic
Encephalomyelitis *) because it forces all patients into one kind of
treatment regime, which is of no lasting benefit for M.E. sufferers and may
do some of them irrecoverable harm, leaving them in a wheelchair or bed
bound and, by denying that it exists as a discrete neurological illness,
denies M.E. the research that it desperately needs to discover the physical
cause and suggest treatment towards cure.
On behalf of all chronically ill M.E. sufferers and researchers (of which
this Research Psychologist, diagnosed for two decades with M.E., is both), I
appeal for this sorcery to stop and for properly funded scientific research
worldwide.
Yours truly
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
From: Dr Rosamund Vallings
The Editor
Howick and Pakuranga Times
In response to the letter from Dr Greensmith in Bristol, UK, I do agree in
many ways with what he is saying. The term ME (myalgic encephalomyelitis)
was coined many years ago as a then apt description of this debilitating
illness. However as research advanced it was deemed inaccurate terminology
and as a result many in the medical community became skeptical about the
credibility of the illness. "-itis" means inflammation and no inflammatory
change had been shown. As a result of many international meetings of world
experts in CFS/ME and much discussion, the illness was renamed Chronic
Fatigue Syndrome. This term, although in many ways inadequate, was accurate
and medically acceptable until such time as the research showed us exactly
what was going on pathologically. i.e. the illness is chronic with
associated abnormal fatigue and a number of very specific symptoms thus
making it a syndrome.
Patients have however never liked the term for the very reasons Dr
Greensmith has pointed out. So often, people who are chronically tired (and fatigue is a feature in many illnesses, both physical and mental) are inadvertently given the label Chronic Fatigue for want of anything else specific coming to light, and this has then been confused with Chronic Fatigue Syndrome. This has of course meant the debate about the reality of the illness CFS has resurfaced again and again, through lack of understanding of the confusing terminology. Thankfully a huge body of exciting international research at prestigious institutions has clarified our understanding of the illness.
At a recent medical meeting of the International Association for CFS,
nomenclature was again discussed in light of current genetic, neurological
and immunological research. It was unanimously decided that the name should
be changed to CFS/ME – "ME" now representing the medically acceptable term
"Myalgic Encephalopathy". This means that there is abnormal brain pathology
but not inflammation as the original term indicated.
This may all seem somewhat pedantic, but our patients deserve correct
acknowledgement and understanding. If we endlessly change the name, the
illness lacks credibility and we as health professionals can easily become
confused, which may end up with our patients being inadequately treated for
this very serious illness.
Rosamund Vallings.
http://www.times.co.nz/cms/news/2008/01/art100018948.php
Friend to chronically fatigued patients
By Lisah Henry
Thursday, 10 January 2008
For once it is the doctor and not her patients feeling overwhelmed.
"It has been a little overwhelming," the Clevedon resident told the Times
between patients at her Ridge Rd practice.
She is New Zealand's leading specialist on chronic fatigue syndrome; an
interest peaked back in the early 1960s while working in her native-England.
"I was working in a hospital in London and we saw it quite a bit among the
staff at another nearby hospital – who became chronically ill.
"It became known as Royal Free disease, in reference to the hospital where
these people were working."
In 1966 came to New Zealand and set up her general practice in Bucklands
Beach before setting up in Howick several years later.
In 1973 she was a co-researcher into the condition also known as Myalgic
Encephalopathy (ME) at the Department of Rheumatology at the University of
Auckland.
"During and after the research I kept in touch with some of the participants
as their doctor.
"I also established an education and support group where people could go to
learn more about their condition and how to manage it."
CFS, ME or Tapanui Flu – are all common names for the condition and Dr
Vallings says it is a lot more common that people think.
"It's thankfully a lot more recognised today too, among the general public,
but more importantly among the medical community."
Dr Vallings can take a fair share of the credit for that greater
recognition, as she travels extensively attending conferences, giving
lectures, participating in research, and producing comprehensive information
for patients and doctors.
"I recently had an article published in NZ Doctor and write and maintain the
management guidelines for doctors."
She has published and presented papers at many international conferences and
was elected to the editorial board of the US Journal of Chronic Fatigue
Syndrome in 2001.
Dr Vallings says CFS is a real medical condition that can strike at the most
healthiest of people.
"You often find very busy people or very sporty people who have had a virus
of some sort and then not had time to recover properly can be susceptible
the condition.
"We're not talking about being a little tired. This condition, as the name
suggests, is chronic and can be life altering to those with it and ongoing
for years."
As the only GP few specialising in the area, she is in constant demand with
patients from throughout New Zealand and even some overseas.
She has been medical advisor to the Associated New Zealand Myalgic
Encephalopathy Society (ANZMES) since 1980 and was president for seven
years.
In hearing of the honour, Whatakane ME sufferer Steve Napier said: "Dr
Valling's very sound and practical advice allow me to continue working
through my illness. Without her help I would have had to close my business
down."
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