CFIDS name change petition please read

[magnif]

This petition is very important to all of us with fibromyalgia and/or CFIDS. This petition concerns the proposed name change to ME-Myalgic Encephalomyelitis
"Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a poorly defined, misunderstood, controversial syndrome which remains underfunded and underresearched. The name Chronic Fatigue Syndrome itself has trivialized the illness and further subjected these patients to incredulity and ridicule. The CFS rubric has not only neglected and failed to help those with ME, it has harmed them."
http://www.petitiononline.com/MEitis/petition.html

There are 2956 signatures the goal is at least 6000. Please help those with this terrible disease-the name Chronic Fatigue does not begin to describe what these people go through.

[TheLoneGunman]

(sorry, but you caught me in a ranting mood)

Where do you draw the line here?

Smallpox isn't a tiny disease, so let's call it BPWP (Big Problem With Pox)

Chicken Pox doesn't mean that you are "chicken" about something so let's call it the BBSD (Big Bold Spotty Disease)

The Ebola Virus might be offensive to people who live near the Ebola river, so lets call it NFV (Nasty Fatal Virus)

Finally, death doesn't sound severe enough so let's call it "The End, We mean it this time. You are not coming back. Terminated. Finished. Kaput. The big final whistle!" (imagine writing that on the top of documents instead of "death")

[hapoo]

roflmao... Ignore TLG, if it doesn't effect him personally, he doesn't care about it and will do everything to make that clear.

[The Happy Squirrel]

well i do care i ahve a very close freind with fibro and its important to me to thids

[magnif]

Your feeble attempt at humor-if I can call it that shows why the name change is needed. I know a wonderful 18 year old who has been bedridden with this for 5 years-that is no way to spend you childhood. This disease respects no one or no age.
To enlighten you here is a definition of CFIDS:
London criteria for myalgic encephalomyelitis, 1994
by EG Dowsett, A Macintyre, C Shepherd, et al.

[Note: in recent years PVFS (postviral fatigue syndrome) has become
synonymous with M.E.]

All three criteria must be present for a diagnosis of ME/PVFS to be
made:

1. Exercise-induced fatigue precipitated by trivially small exertion
(physical or mental) relative to the patient's previous exercise
tolerance.

2. Impairment of short-term memory and loss of powers of
concentration, usually coupled with other neurological and
psychological disturbances such as emotional lability, nominal
dysphasia, disturbed sleep patterns, disequilibrium or tinnitus.

3. Fluctuation of symptoms, usually precipitated by either physical
or mental exercise.

These symptoms should have been present for at least 6 months and
should be ongoing.

Although ME/PVFS typically follows an infection, usually a virus
illness (which may be subclinical) in a previously fit and active
person, it has also been observed to be triggered by other factors
such as immunisations, life traumas and exposure to chemicals.
Furthermore, in a minority of patients, ME/PVFS has a gradual onset
with no apparent triggering factor. For these reasons proof of a
preceding viral illness is not a prerequisite for diagnosis.

Many symptoms are experienced by people suffering from ME/PVFS and in
the right symptomatic context they contribute to the validity of the
diagnosis. Nevertheless, not all people suffering from ME/PVFS
experience all these symptoms and their absence does not exclude the
condition.

These can be subdivided into the following two categories:

Autonomic

* bouts of inappropriate night or day-time sweating;

* Raynaud's phenomenon; postural hypotension;

* disturbance of bowel motility manifesting as recurrent diarrhoea
or occasionally constipation (these symptoms are frequently
indistinguishable from those of irritable bowel syndrome);

* photophobia; blurred vision due to disturbed accommodation;

* hyperacusis;

* frequency of micturition; nocturia.

Immunological (Symptoms suggesting persistent viral infection):

* episodes of low-grade fever (not exceeding an oral temperature of
38.6C) combined with feeling feverish, (i.e. a down-regulated
'thermostat');

* sore throat which may be persistent or recurrent (i.e. present for
at least one week per month);

* arthralgia (fixed or migratory)

This list is by no means exhaustive. Headaches, nausea and bloating,
for instance are common symptoms in many patients but are not
sufficiently discriminative because of their widespread occurrence in
many other disorders. The curious intolerance to alcohol and
hypersensitivity to drugs are highly specific in this context. It
should also be emphasised that the symptoms of ME tend to vary
capriciously from hour to hour and day to day. Nevertheless it is
absolutely characteristic that they tend to be exacerbated by
physical or mental exertion and the association should always be
sought whilst taking the history.

If this does not show how serious this is here is a 2nd definition of CFIDS:
The following Dr. A.L. Wallis" 1955, Edinburgh Definition, with
> modifications by Dr. Melvin Ramsay, represents an accurate, clinical
> description of a full-blown case of M.E./CFS.
>
> General Characteristics:
>
> The systemic illness is accompanied by a relatively low fever or subnormal
> (and highly variable) temperatures and "an alarming tendency to become
> chronic". There is a marked variability and fluctuation of both symptoms and
> physical findings in the course of a day.
>
> System Dysfunction:
>
> There is a unique form of (marked) muscle, sensory and cognitive
> fatigability, whereby, even after a minor degree of physical (sensory,
> cognitive or emotional) effort, 3-5 days or longer elapse before adequate
> muscle (cognitive and emotional) powers are restored.
>
> There are CNS changes, impairment of memory, changes in mood, sleep
> disorders and irritability or depression.
>
> There may be significant involvement of the autonomic nervous system
> resulting in orthostatic tachycardia and hypotension, coldness of the
> extremities, episodes of sweating or profound pallor, sluggish pupils, bowel
> changes and micturition, possibly as a result of a lesion of the
> hypothalamus.
>
> There is diffuse and variable involvement of the central nervous system,
> leading to ataxia, weakness and/or sensory changes in a limb, nerve root or
> peripheral nerve.
>
> Myalgias and Cephalgias:
>
> There may be muscular pain, tenderness and myalgia in up to 70% of these
> patients.
>
> There are usually cephalgias, characterized in mild cases with retro-orbital
> and occipital headaches in the early stages of the disease process. In
> severe cases, the illness may debut with a severe incapacitating pancephalic
> pain that may persist for months. In addition, cervical and upper thoracic
> vertebrae pain, often with causalgia, is regularly encountered.
>
> The Chronic Illness
>
> If the illness persists for a period of more than one year, there is an
> alarming tendency for the disease process to become chronic.
>
> Chronic illness represents an extension of the features of the acute
> illness. However, the symptoms tend to be less fulminant, less variable and
> compounded frequently by a financial and social poverty that occur as a
> direct result of the disabling features of the M.E./CFS illness.
>
> Warning: Many treatable and some potentially progressive and
> life-threatening illnesses may also debut in this fashion. The patient
> should always be seen and investigated by a qualified physician to rule out
> these illnesses. Patients who persist in their illness for more than six
> months should be re-examined at least every six months and tested yearly,
> since some illnesses may declare themselves in an erratic and cyclical
> manner.
>
Now I ask you does the name Chronic Fatigue seem like a proper name for this horrible disease.

[TheLoneGunman]

Originally posted by magnif
Your feeble attempt at humor-if I can call it that shows why the name change is needed.

No, you may not call it that.

I never intended to make light of the situation rather to point out the question of where do we draw the line?

Your goal, education, would be better reached if you went about it directly, instead of changing the name so you had a "sexier acronym" or "more serious sounding name" and then putting forward the same education.

[Nanotech9]

i think TLG would have responded better if you were a long time poster (i have to admin, i myself thought is was "spam"... i guess your pretty serious though)

[magnif]

Are you aware that the rest of the world already calls CFIDS ME.that we change the name to Chronic Fatigue. What we are trying to do is to change the name back.back to a name that is more approrpriate.
I once asked a friend to define ME so that I could post a definition when asked what it is. She is a long time victom of this probably since the age of 6 but has only been really bad for the last 6 years. She is about 80% disabled by this-bedridden much of the time and forced to live in disability. These are not her choices,it is not how she wants to live. She is unable to do even the basic things we take for granted. She has meals on wheels so she can eat prpoerly,some one comes in to clean, she has a health aide. Her apartment is going condo and she can't afford to buy it and may have to move to senior housing. She is luckier than some. In many areas those who are disabled cannot move to senior housing. They are not allowed into assisted living because you must be 55-65 in most units for assisted living here-she is mid-40's.
Are you aware that many off the assisted suicides od Dr. Kevorkian(sp?) are victoms of CFIDS of FMS? That tells you the suffering that many must endure everyday.
The goal with the name change is not to have a sexier sounding acronym but to return to its original name. Maybe you should read some of the comments on the petition. Here is one that I find fitting here: "Chronic Fatigue Syndrome" is like calling Diabetes "The eating too much sugar" disease.
Nanotech9 why should I be taken any less seriously because I am a first time poster here? That does not say much for anyone here. I am new here but not to EZboard forums which this forum is part of. As I said in the beginning I asked my friend for a definition and here is what she wrote:

Hey there...Uh please correct my spelling where it is dodgey

Myalgic encephalomyelitis was the name given to the illness which broke out
at the Royal Free Hospital in London in 1955. Myalgic means "muscle pain"
encephalomyelitis means inflammation of the brain and spinal cord. That name
has been in constant use since 1956.

Recently there have been critics of the name who say that it is not entirely
accurate; that while inflamation of the brain has been found, inflammation
of the spinal cord has not.

Those of us who prefer the term myalgic encephalomyelitis do so for several
reasons. One is its long history of use. Another is that it does describe
the symptoms, it is taken more seriously than CFS (just try it ;-), is that
it is in the International classification of Diseases, published by the
World Health Organization under a neurological code. In the ICD-9 which the
US is still using it is listed under 323.9. In the ICD-10 which was
published in 1992 but has still not been adopted by the US it is listed
under G93.3. Both those listings are neurological disorders.

Also there is a history of accepting established names of illnesses even
though later on they are not considered accurate to the last degree.
Example: Influenza means "the influence" malaria means "ill wind"
Prostaglandins were first thought to be created in the prostate - it turns
out they are what cause menstrual (sp) cramps. It took years of lobbying by
women's groups and patients to get the name "hysteria" ( which means
wandering womb) to conversion reaction.

Chronic fatigue syndrome it self is a misleading term as it implies that the
only sympton is chronic fatigue. It is also grossly inadequate and does not
convey the seriousness of the disease. For some reason, the scientists who
seem to object to the "myel" part of encephalomyelitis - the part that means
spinal cord - have not done anything to change the name of CFS. All the
afore mentioned makes one wonder why scientists are so persnikity about
"myel" being unproven - not disproven, by the way, but just unproven -
whilst they tolerate the name CFS.

From my personal experience most people do not ask what myalgic
encephalomyelitis means - they are simply impressed. No more will one hear "
Oh I think I have that too..." However if one is asked one can certainly say
that it is a neurological disorder which results in a variety of
symptoms....including orthostatic intolerance, various cognitive problems
etc..until the questioners eyes glaze over.

Not everyone who fits the CDC '94 criteria has M.E. The definition of M.E.
requires: "long delay in the restoration of muscle power after even a minor
degree of physical effort". CDC'94 has "post exertional malaise lasting
more than 24 hours" as an optional criterion.

However it has been my experience that most of the people with CFS actually
have ME. You can ask your doctor to diagnose you with ME now...the code that
he or she would need is 323.9


I am sorry that this is so long but it is important to me. I have fibromyalgia which is closely related to this-some even say it is just a different or milder form of it. I have several friends with ME-2 of them are children. I could go on and on. THIS IS IMPORTANT ASK ANYONE WHO HAS IT.

[LPMiller]

I signed.

[OC]

Originally posted by LPM
I signed.

So did I.

TLG - why the hell can't you just be nice? You often have interesting things to say, but you are far too quick to belittle people, and I for one wish you would knock it off.

-OC

[Jenny]

I signed, too. Good luck.

TLG, I agree with overclocked. Geez man!

[topane]

Originally posted by overclocked
So did I.

TLG - why the hell can't you just be nice? You often have interesting things to say, but you are far too quick to belittle people, and I for one wish you would knock it off.

-OC

I belittle people because it addresses my own inferiority complex.

--TLG

[magnif]

3011 signatures

[welfareloser]

Originally posted by TheLoneGunman
(sorry, but you caught me in a ranting mood)

hey, man you should be honored... a rare APOLOGY from tlg, and in advance, no less...

and he wasn't belittling the disease. just saying that taking a name change so seriously kind of directs attention away from the seriousness of the disease.

other diseases change names all the time without a petition. i suffer from polycystic ovarian disease, which has recently undergone a casual name change from "disease" to "syndrome," reflecting the new information we have about the condition as a completely haywired endocrine system with effects throughout the body, rather than an acute "disease." and it doesn't have to do with just the ovaries... but nobody's confused about that simply because of the name of the condition; no reason to rename it something more "accurate."

the disease is not silly. but a petition for a name change is a little... off.

[magnif]

Saying your sorry before you say something is not an apology and if someone must apologize for their actions first then they know they are wrong and should not do it.
Unfortunately the rest of the world calls CFIDS ME we changed it and people are urging that the name of this terrible disease be returned to its orignal one. I recently read a study where the same set of symptoms were given 3 different names. The results showed it is all in the name so to speak. The more serious name got more attention and better treatment as compared to the more trivial sounding name even though the symptoms were the same and it was the same disorder.
Chronic fatigue syndrome it self is a misleading term as it implies that the only sympton is chronic fatigue. It is also grossly inadequate and does not convey the seriousness of the disease.

[welfareloser]

Originally posted by magnif
I recently read a study where the same set of symptoms were given 3 different names. The results showed it is all in the name so to speak. The more serious name got more attention and better treatment as compared to the more trivial sounding name even though the symptoms were the same and it was the same disorder.

fair nuff (if this was a study of doctors and not random mall rats...)

i see the point, but i'd rather devote my energy to changing the med school system so that it creates doctors that are able to think instead of egomaniacal dimwits, than devote it to making disease names painstakingly precise and monumentally unwieldy.

and tlg is a professional devil's advocate and all-around pain in the patookus, and he snipes because he cares. and my thing about the apology was just a joke; i'm sorry you took it seriously.

oh, what the hell. i'll quit being a b!tch and sign the stupid petition just to make doctor's lives that much more difficult.

[TheLoneGunman]

Originally posted by magnif

Unfortunately the rest of the world calls CFIDS ME we changed it and people are urging that the name of this terrible disease be returned to its orignal one.

I am curious, who is the "we" in "we changed it" above?

We is a pronoun which indicates the speaker along with at least one other. Therefore, YOU were somehow involved in this change. If YOU helped change it, then it is YOUR problem at least in part.

I can tell you that *I* didn't have anything to do with the name change (Strange how the AMA, the NIH, the NSF and other groups don't call me up for personal opinions )

Also, who is "the rest of the world"? If it means everyone who is not part of the "we" mentioned above, then I suppose I fit into "the rest of the world". Therefore, according to your many rants, I am part of the solution and you are part of the problem . Remember, this is YOUR logic, not mine.

As far as your petition, I think some of the others understood me correctly the first time. You have spent at least 4 of your 6 total posts ranting about the name change. If you had put that much effort into finding a cure, think how much could have been accomplished.

[mojo]

Originally posted by Jenny
I signed, too. Good luck.

TLG, I agree with overclocked. Geez man!

i wasnt gonna say anything cuz i thought enough was enough, but count me with jenny and overclocked

[magnif]

There are now 3202 signatures.