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Myalgic Encephalomyelitis – the evidence proves it is the only fair name
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Posted by: John
January 30, 2008 |
Before we do something we might regret shouldn’t all the facts be on the table?
Its called informed consent, but we are not being fully informed. All the facts are being hidden
just as they were when CFS was invented to hide “the awful truth” about
Myalgic Encephalomyelitis.
The name change advisory board says that the acronym “ME/CFS” is a “medically correct”
name to replace CFS, but it will still have a false CFS fatigue definition distorting research,
and the demeaning CFS will still be part of the name? How could anyone believe this unimaginative
hype that CFS will disappear when it is clearly part of the acronym/name?
Don’t be fooled again.
If you rename this disease - again - and believe that the acronym ME/CFS is going to make
CFS go away you may not like the consequences.
People will ask what does ME/CFS stand for and you will have to answer with nine words and
then explain some more:
Myalgic Encephalomyelitis or Myalgic Encephalopathy and Chronic Fatigue Syndrome.
Three names for the disease and you supposedly get to choose whether you call it
Encephalomyelitis or Encephalopathy, its either one or the other.
How does that clear up the confusion?
Whatever you “choose” you will still have to keep on saying the F word,
so it seems CFS is not going away.
Some argue that Myalgic Encephalomyelitis is a difficult name to pronounce,
but if you look in a medical textbook you will find many extraordinary and complicated terms
and that certainly is not a reason to reject the name of this disease.
If you can say polio-my-el-itis then you can say encephalo-my-el-itis –
a learning method that you get taught in your first years at school.
The name affects everyone around the world so why is the decision to rename
the disease once again in the hands of a select group of Americans?
Where are the international M.E. experts, particularly the ones who examined Myalgic
Encephalomyelitis patients long before the terrible CFS name change?
What about Ramsay’s 1986 definition or Hyde’s 2006 definition?
What about the WHO classifying M.E. as a neurological disease way back in 1969?
What about the history of epidemics dating back to 1934?
Sadly what about the autopsies?
Shouldn’t we be discussing these terribly important facts?
Isn’t it crucial to discuss the history of the epidemics and the knowledge that
Myalgic Encephalomyelitis is a very similar disease to Polio,
that it was formerly called Atypical Poliomyelitis until they found that
it was caused by other enteroviruses and not polio enteroviruses?
Or that it is a very similar disease to Post-Polio Syndrome,
a neurological disease placed correctly at the NINDS?
Why isn’t Myalgic Encephalomyelitis placed correctly at the NINDS?
No, the CDC prefers to call it CFS, states there are no tests or treatments and
hides it at the Office of Women’s Health, adding further insult to
all the males who suffer from M.E.
Multiple Sclerosis was called Hysterical Paralysis or
Fakers Disease when they did not know how to diagnose it and M.S.
sufferers were not believed just as we are not believed,
but in the 1950s a diagnostic test was found and the original name,
described by a famous physician Charcot in 1860 was restored,
and now everyone knows how serious this disease is.
Most people think that we are faking it too when they hear CFS.
It’s almost the same story but the major difference is that
we had diagnostic tests including MRIs, viral and immune tests,
and M.E. experts saying it was Myalgic Encephalomyelitis back in the 80s.
They knew what it was yet they ignored all the evidence,
changed it to CFS and created a new definition.
This is the critical point – there was no need to change the name at all.
The scientific evidence for inflammation keeps mounting up and proving that the original
name was right, so why aren’t we simply discussing going back to the historically
and medically correct name? Don’t you think it is time that all these questions and
facts were discussed openly, and that patients and M.E. experts from all over the world –
not just a small group of American experts - are rightly consulted about restoring
Myalgic Encephalomyelitis and ensuring that the CDC acts fairly and places M.E. at the NINDS?
It is the only fair thing to do, in a “fair campaign”.
What is going to help us the most, another confusing name change or the truth
about Myalgic Encephalomyelitis, the diagnostic tests, the known viral and toxin
causation and the real possibility that researchers could have discovered a treatment
by now if they had adequate funding?
If only we hadn’t wasted the last 20 years on CFS and all those
made-up fatigue definitions and the useless studies on fatigue.
M.E. patients not only suffer severe illness and pain, they have been
unnecessarily traumatised with disbelief, neglect, abuse, poverty, isolation,
loss of family and friends. This has to stop. Please stop and think before you get
caught up supporting this mess and then you won’t have to complain later on that another
wrongful name change did not change anything at all and that the psyches are still getting
paid millions to provide Character Breaking Treatment and Gratuitous Exercise Torture while
biomedical research is starved.
Stop the madness! Speak up! Don’t let them get another dollar that should go
to urgently needed research and support!
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I'm with you
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Posted by: chngthname
January 30, 2008 |
Let's go all the way and get rid of the stupid "chronic fatigue" label that leaves us all shaken and humiliated by lack of medical treatment or respect for all we have suffered through and given back by never letting them win and destroy our hope and ourselves and just go away. Someone- lots of someones- out there knows the pieces of this puzzle, knows the right treatments and won't leave us out in the cold, and this is the time to go for it. We must stick together and prove to the doubters and honestly, the liars, that we are what we say we are, that there is medical evidence, and we are *not* going to just conventiently shut up, go away, or die like they want us to. I want treatment, I want dignity, I want the right name for the disease that has destroyed my life, yet given me something to live for- the day we are universally given the respect and care we deserve!! |
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CFS is not a disease
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Posted by: JUDITHWISDOM
January 31, 2008 |
I agree with virtually everything this post enunciated, and have stated it before.
There was no medico-scientific reason to come up with the name CFS and its associated case definition. In science you don't take action which implies that you've discovered a "new entity" unless you have good/new reasons to claim that an old/previous name and case definition is not relevant for what might seem to be the discovering of an illness which has not be identified, named, written about already.
"CFS" was fabricated in the US I believe because the physicians didn't want to associate themselves with "myalgic encephalomelitis" because at the time the illness that name described didn't have what they thought were medically/scientifically respectable markers. Their status within American medicine would not have been helped since at the time, and still now to a lesser extent, the criteria needed for something to be considered scientific were those closer to physics, which was totally inappropriate a scientific model in key respects for medicine. (This happened in other fields as well; hence, for example, in sociology the hotshots were developing measurement scales that they felt could make their work seem scientific because the scales were composed of assigned numbers.)
Most of the research that has emerged since ME was so named has in fact given considerable scientific substantiation to the definition associated with ME. More work obviously needs to be done. It may turn out that ME either has subsets or differences of groups of ME patients that will call for new names.
The ONLY however weak justification for adopting "ME/CFS" is to let it be known that the illness called "CFS" is also called "ME" and to quell the fear that the literature which has used "CFS' will be disassociated with ME. That is a problem we have to find ways, in talk and in indexing, to overcome. It is doable, if irritating. But that is far less irritating that, for patients especially, to give credence to the misnomer CFS.
To say "I have ME" will elicit questions, like "What's that." Then you have to tell them that some early confusion on the part of certain doctors had them thinking that the disease ME was not what they were dealing with and so they came up with a very unsuitable and inappropriate name--CFS ("CFIDS:" was evidence of patients realization of how incorrect and inadequate CFS, albeit still not the solution, which is and was to call this dog by its name, ME.
I do not believe CFS is anything but a medical-historical story. If in fact its creators found that some of the patients had a group of symptoms not referred to or opposed by ME, then what they had found was a new subset. Instead, scads of people with ME were said to have CFS.
ME/CFS means either/or. It equates the two. They are not different but equatable. One is and one isn't and mustn't be given further sanction.
Judith Wisdom |
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The distinction must be made between terminology and definitions.
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Posted by: lkw777
February 18, 2008 |
The distinction must be made between:
~terminology~ and ~definitions~.
__________________________________________________
- The terminology is often used interchangeably, incorrectly and confusingly and new ill-defined umbrella terms such as 'ME/CFS' 'ME-CFS' 'CFS/ME' 'CFIDS' and others just increase this confusion.
- However, the DEFINITIONS of M.E. and CFS are very distinct, and it is these definitions which are of primary importance.
Myalgic Encephalomyelitis, G93.3, Neurogenic, is an acquired infectious neurological disease initiated by a virus infection which is characterised by (scientifically measurable) damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis (as well as cardiac insufficiency; a form of
heart failure).
The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease that can always be verified by objective testing; if all tests are normal, then a diagnosis of M.E. cannot be correct.
There are also abnormalities on physical exam in M.E.
There are more than 64 M.E. symptoms.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal.
M.E. is a chronic/lifelong disease that affects adults and children.
'Fatigue' is not a defining symptom of M.E., nor even an essential symptom of M.E. . People with M.E would give anything to instead only be severely 'fatigued' or tired all the time.
~
Chronic Fatigue Syndrome (CFS) is a man-made construct created in the US in 1988.
It is not a distinct disease, but a mere diagnosis of exclusion (a wastebasket diagnosis) based on the presence of the symptom of 'fatigue'.
CFS cannot be diagnosed until after 6 months have passed.
There are no characteristic abnormal tests or physical signs of illness associated with CFS.
***If serious abnormalities are found on testing, a person no longer qualifies for a diagnosis of 'CFS.' (The fatigue in 'CFS' is 'medically unexplained.')
The onset of 'CFS' may be gradual or acute (sudden).
***A diagnosis of CFS does NOT mean that a person has any distinct disease, including M.E.
In essence, every diagnosis of CFS can only ever be a misdiagnosis. 'CFS' is made up of people with a vast array of unrelated psychological and non-psychological illnesses with little in common but the symptom of 'fatigue'.
~
***The primary problem is not the name CFS. This is only a very minor part of the problem.
~
The real issues are:
The DEFINITIONS of CFS, which define exactly nothing, and allow any number of very different patient groups to be unscientifically treated as if they were one and the same because of the flawed CFS disease construct.
The involvement of financial and political vested interest groups in what should be a scientific discussion.
The inappropriate involvement of psychiatrists in treating many different non-psychiatric/psychological illnesses.
That all of the existing science is being purposefully ignored by those in positions of power
That most of the 'science' on CFS being produced is seriously flawed and biased, and that often the vested interest groups involved have determined the outcomes of this 'research' before the actual studies have been conducted etc.
That the media is colluding with the government and other vested interest groups in keeping the public ignorant of the facts surrounding M.E. and the difference between M.E. and 'CFS.'
That there is no such disease/s as 'CFS' and so every diagnosis of CFS is a misdiagnosis.
~
Sub-grouping 'CFS' or renaming (as some CFS groups are proposing) would only waste another 20 years or more and ensure that the relentless abuse, mistreatment, neglect and needless deaths continue. This proposal would not
further the interests of people, with M.E., nor any of those patients misdiagnosed with CFS. Yet again, only vested interest groups will benefit.
Changing the name of the bogus disease construct of 'CFS' to some variation on the term M.E. is not at all a step in the right direction. If successful, this move will actually be a huge step BACKWARD for everyone with M.E. and all those patients misdiagnosed with CFS. It will make it harder than ever for anyone to distinguish between 'CFS' and authentic M.E., and for those misdiagnosed with CFS to be able to receive a correct diagnosis and
treatment finally. It must not be allowed to succeed.
The groups proposing this action do NOT speak for, or represent, the M.E. community.
The 'CFS name change proposal' seems nothing more than a political stunt; designed to appease (justifiably) angry patients and make them feel like something is being done and that progress is being made finally - but not to actually effect any real change.
The proposal that the name of 'CFS' should be changed to a variation on the term M.E. - despite the fact that the term is completely scientifically inaccurate for the vast majority of the patients involved and that this term has already been TAKEN by a very well-defined (and scientifically sound) patient group for over 50 years - merely because it 'sounds a lot more serious' makes a mockery of legitimate advocacy, and of science, logic and ethics.
http://www.ahummingbirdsguide.com:80/cfsmustbeabandoned.htm
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