WHEN WILL THEY EVER LEARN?
by
Gurli Bagnall
When a moral debate is in progress, the views of those who are affected are often ignored or dismissed as irrelevant. Be the latter six or sixty, they are all regarded as minors who have no legal say in the decision making process.
A good example is the voluntary euthanasia debate. The conscience vote cast
by politicians is often determined by personal religious beliefs which
override the beliefs of all others including the terminally ill.
Those in the medical profession who argue vehemently against voluntary euthanasia, do so on the grounds that, "I'm here to save lives! Not to kill people off!" If only their ethics were as strong when committing one of those many preventable medical "errors" which contribute to the iatrogenic epidemic.
Common to nearly all who argue against, is the use of the word "euthanasia"
without qualifying it by ³voluntary². This gives the impression that a
death sentence has been passed by others rather than death being the choice
of someone suffering unbearably.
Such strategies are dishonest and whatever the case, if it can only be
argued dishonestly, then there is no case. A patronizing attitude is in
no way, shape or form, kindness, and it generally hides an agenda that
bears no relationship to the wishes of those affected.
In the current debate over what to call ME, we see both strategies in
abundance.
In the 1980s when the name was changed from ME to CFS, we were told that CFS
described the condition better. Of those shoved into the CFS melting pot,
genuine ME sufferers were not convinced then and, judging by Co-cure and
various support groups, they are not convinced now. One would have thought
that after twenty years, those preaching in favour of CFS could have come up
with a different argument if for no other reason but to relieve the boredom.
Those who favour CFS/ME or ME/CFS seem to be under the impression that
Myalgic Encephalomyelitis sufferers will be delighted to accept this
compromise. But we have already lived with that particular compromise for
some years and we are still ³kindly² being told that thischoice describes
the disease the best. As for the inclusion of MEŠ. hang on to your hats,
chaps! We can now have it both ways - we can choose whatever we want, be
it: ³itis² or ³opothy².
For goodness sake! This is a serious matter. It is not a child¹s game! We
do not live with Alice in her Wonderland. We live in the real world where
the name of a disease influences impressionable members of the medical
profession to the point where their prejudices turn to outright abuses.
Having seen and experienced the disastrous effect CFS had and has upon our
lives, we now hear that certain experts in the States have taken up the
good fight for a "fair name". No wonder outsiders are often confused! The
cool, calm and kindly manner of the "experts" is at odds with the patients'
very apparent anger.
As a few crocodile tears slide down the "experts" cheeks, they say: "Oh
please! There's no need to thank us! ME/CFS WILL be the official title and
we'll fix it so you can use 'itis or 'opothy. The choice is yours!"
Well....hallelujah!
I do not believe there are many under any illusion about the merry-go-round
that is currently being planned for ME patients if the ³experts² are
allowed to bulldoze this proposal through.
Frank Twisk had this to say in his recent posting to Co-Cure:
³My disease [has] already got a fair name: Myalgic Encephalomyelitis. A
name which is used in medical literature for more than 70 years, a name of a
disease well defined by dr. Melvin Ramsay, a name used for all epidemics in
the last century, and above all, a name acknowledged by the WHO as a
(neurological) disease.²
(Nightingale definition/Byron Hyde, 2006:
< http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf
I could not agree more and a realistic explanation for the insistence in
continuing the CFS lie, is long overdue.
Remember the old song, ³Never Smile at a Crocodile²? Well, the one that
is smiling so ³kindly² at us (as it murmurs sweet nothings about ³sympathy
and understanding²), is anticipating our further disenfranchisement from
society in general, and the severing of ME from official recognition by the
WHO in particular.
Is it acceptable to refer to P/CFS (Parkinson's disease) , MS/CFS (Multiple
Sclerosis), MN/CFS (Motor Neurone disease), C/CFS (Cancer), HF/CFS (Heart
failure) etc.? With all the connotations that accompany CFS, it would be
outrageous to expect sufferers to have the added burden of such insulting
nonsense. Without doubt, there would be a hue and cry, and a tarring and a
feathering after which those no-longer-smiling crocodiles would be run out
of town!
Suffering a disease like ME requires great inner strength because of the
constant pressure to deal with incorrect diagnoses, physical and mental
abuse, and attacks upon our honesty and integrity - not to mention the
imposed financial hardship.
We need to continue to be strong and to insist that the disease we suffer is: MYALGIC ENCEPHALOMYELITIS which is categorized by the WHO as a NEUROLOGICAL DISEASE.
Fatigue is to ME as it is to all of the above conditions. It is one of
the many nasty symptoms that plague sufferers. How can it be that so many
doctors do not have the intellectual capacity to understand this?
Kind regards to all.
Gurli Bagnall (URSULA@xtra.co.nz )
7 February, 2008
Much of what will follow is a discussion of what I "believe" about these names. From a scientific standpoint, CFS is not a name. It is a misdiagnosis, and it has successfully hidden a severe and probably contageous illness from view in the United States - and the World - for twenty years.
The term Chronic Fatigue Syndrome is not only subliminally dismissive, but it is also tarnished by no fewer than SEVEN different, and sometimes conflicting, definitions. The Holmes and Fukuda definitions require physical symptoms; the Oxford definition precludes them. From a purely SCIENTIFIC standpoint, the name is useless.
If you meet the Ramsay or Hyde definitions for Myalgic Encepalomyelitis, then from a SCIENTIFIC standpoint, use that term. If you do not, find out what you have. It is has no name, come up with a different name.
So much for science. What follows is my personal opinion. The term Myalgic Encephalomyelitis has been used to diagnose a disease recognized by researchers since 1934; given the name M.E. in the mid-1950s, and recognized as a neurological condition by the World Health Organization since the 1960s.
I strongly believe that WE SHOULD NOT TAMPER WITH A DIAGNOSIS THAT PATIENTS ALREADY HAVE. That is a position that speaks to ETHICS and MORALITY.
I can see ME/CFS being used IN THE UNITED STATES, ONLY as a temporary transition to Myalgic Encephalomyelitis for those of us who meet the defiition for M.E. Temporary, along with a publicity campaign to introduce the term and definition.
It would be grossly unfair to use it to suggest that M.E. is the same thing as CFS. Many patients with the misdiagnosis CFS actually have M.E. - but many do not.
It would also be grossly unfair to use it to shoehorn the term Myalgic EncephalOPATHY as a synonym for CFS.
Patients have been diagnosed for SIX decades with Myalgic EncephaloMYELITIS, which is not the same thing as CFS. In the United States, the name Myalgic Encephalomyelitis was not used. instead, until roughly 1980, the term Epidemic Neuromyesthenia was used for M.E. (also called atypical polio or Icelandic Disease).
Although the Holmes Committee article of 1988 mentioned only chronic Epstein-Barr Virus as the condition being renamed, very quickly it became "common knowledge" that CFS was the "same thing" as M.E. The term Epidemic Neuromyesthenia disappeared into the dustbin of history.
Stephen Straus's 1988 article on "Chronic Mononucleosis" in the Journal of Infectious Diseases, which he saw as a companion piece to the Holmes article, described the Incline Village outbreak under the subheading "Epidemic Neuromyesthenia." Then he dismissed it as not really being an outbreak (as he also dismissed the patients as probably being neurotic).
I find it interesting that Straus, the national expert on Epstein-Barr and "CFS" at NIH, was fully aware that the Incline Village outbreak was probably E.N. I imagine that in the 1980s, a nationwide outbreak of a disease with "epidemic" in its name would have been most unwelcome.
What could be more easy than to bury it by renaming it "the chronic fatigue syndrome"?
Likewise, psychiatrists in the UK were delighted to have a new name to use to bury M.E. And they did their best, but people continued to be diagnosed with M.E. and thus Myalgic Encephalonyelitis remains the only name in contiguous us for over SIXTY years as a term for the disease I have.
Where did Encephalopathy come from? It was a proposed compromise term in the 1990s. When patients in the U.S. asked to have M.E.-itis recognized here, the authorities responded that "that wouldn't be scientific." They said there was "no evidence" of "inflammation" - that is, the "itis" part. Never mind that patients with poliomyelitis do not have inflammation beyond the initial onset, and nobody renamed that poliomyopathy.
Indeed, the "renaming" was Chronic Fatigue Syndrome. Better to have admitted it was wrong to RENAME it in the first place and go with what was there at the time - which would have to be M.E. (unless CDC wants to resurrect Epidemic Neuromyesthenia, which I doubt.)
At the same time the M.E. community in England was reeling from the onslaught of "Cogitive Behaviour Therapy" and "Graded Exercise Therapy" as recommended treatments for this very serious disease. Some in Europe also hoped that if the offending "itis" were removed from the name, the disease could remain recognized as separate from "chronic fatigue syndrome", "neurasthenia", and somaticizing (the physical expression of a psychological problem).
But the compromise was not accepted. Once again, the authorities insisted it was not "scientific."
So why the sudden rush to accept M.E.-opathy now? I believe there are a number of reasons. The British psychiatrists are betting they can completely bury M.E. if the public becomes confused between "itis" and "opathy." In America, in some cases patients just do not know the history. In other cases, patients who do not meet the definition for M.E.-itis are worried that they will get left behind with "CFS".
I became very concerned about the rush to "M.E.-opathy" when a national fibromyalgia group happily emailed its members that they would be able to use M.E.-opathy instead of fibromyalgia.
So - let's get this straight. If you want a different name to use than CFS, let's admit out loud that CFS was a horrid mistake and return to M.E.-itis, the name AND DEFINITION in contiguous use since the mid-1950s.
As a compromise, I'm okay with the Canadian M.E./CFS (which refers to M.E.-itis) because that references ICD-10's placement of both M.E. and CFS in ICD-10, and the Canadian Consensus Document, available at the website of the M.E./F.M. Society of Canada, has the best diagnosic criteria currently available from an authoritative source.
If you do not fit either the Ramsay definition for M.E. (which focuses on CNS disruption) or the Hyde definition for M.E. (which requires a SPECT scan, and focuses on poor blood flow in the brain), then do not use M.E.-itis for yourself. In that case, consider what Byron Hyde has said: "CFS is a misdiagnosis." Find out what you DO have.
I see nothing wrong with the name fibromyalgia, even though it has been dissed by the New York Times, because it is accepted as a rheumatological condition (a fact which apparently escaped that once respectable newspaper). But fibromyalgia is not M.E., and using M.E. as an umbrella term can only do harm in the long run.
Just as it was wrong for the United States to foist "chronic fatigue syndrome" upon the world, it would be wrong for a large number of U.S. citizens to foist the term "Myalgic Encephalopathy" upon the world. Yes, there are some Europeans who use the phrase, but they are in a minority and have been effectively voted down by their compatriots, who still use M.E.-itis.
So:
1. M.E./CFS is okay in the U.S. as a transition term - until Myalgic Encephalomyelitis is an accepted diagnosis for a neurological condition under 323.9 in ICD-9-CM and G93.3 in ICD-10.
2. M.E./CFS is okay in the U.S. when accompanied by the Canadian consensus document's diagnostic criteria.
3. M.E./CFS is NOT okay if the intention is to foist the name Myalgic Encephalopathy upon the world, because it is unfair to change an existing diagnosis. Myalgic Encephalomyelitis is an existing diagnosis. Leave it alone for those who have that diagnosis. Come up with a different name if you don't meet the definition for that diagnosis.
4. M.E./CFS is not okay if you mix it up with the British psychiatrists' phrase CFS-M.E., which they believe is the same thing as "neurasthenia," a neurosis, a "nervous" disease (like a "nervous breakdown"). "Neurasthenia", by the way, is not listed in DSM-IV.
5. M.E./CFS is not okay as a permanent solution.
According to the CDC, at least one million Americans have "CFS" although most have no idea what is wrong with them. According to the CDC, their families lose an average of $20,000 in lost income because of the disease. That means the nation loses $20 billion dollars in GNP annually because this disease is ignored and misportrayed. That means the nation loses $7.9 billion annually in income taxes because this disease is ignored and misportrayed. This game has gone on too long.
Ultimately, we need to focus on biomarkers and solutions. For that we need homogeneous samples from populations with similar symptoms. Patients should be diagnosed by the symptoms they have, not the diseases they do not have. Keep that in mind.
Mary M. Schweitzer, Ph.D.
Patient - Full Disclosure:
I have HHV-6A, the 37kDa Rnase-L Factor, a low natural killer cell function, and recurring EBV. I am in partial remission on an experimenal antiviral-immune modulator. When in relapse, I meet the Ramsay definition for Myalgic Encepalomyelitis - I actually fit it better than the Fukuda definition for CFS.
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