Malaise…Lets discuss this!

 

 

Malaise…

Lets discuss this!

 

I will point out again like I have before, remember, im coming from an RN point of view for the benefit of the patients because I was an active RN until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject because I would end up sounding more like an angry patient than a nurse who is very very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Do you know what “Malaise” is?

 

Before I get into detail about what “Malaise” is, I just want to point out a few things.

I just recently did another post related to “Malaise”, It probably sounded… very…severely opinionated because of what I named the post.

The post could’ve sounded like a controversy type thing, then even more so.

The post was about the symptom described on the CDC 1994 Fukuda Definition of CFS “Post-Exertional Malaise lasting more than 24 hours.”

I did that post for a reason, the reason being, because I don’t think people including the physicians are seeing what the significance is, of this one little word called “Malaise.”

 

Clarification!

I will also clarify I am NOT a “word” nerd, but I am a stickler when it comes to a level of patient care. That level should not be compromised at all, especially this particular example because so many patients have become disabled and homebound because of the misinterpretation of this symptom because of the use of that little word called “malaise” that was the wrong word to use.

Quite frankly, in my personal and professional opinion this was unacceptable, this was negligent, this was nothing less than a crime!

Patients have suffered to the extent that no one should ever have to suffer because of basic incompetence and lack of knowledge of medical terminology!

This was a disgrace!

Shame on the late Dr. Stephen Straus!

Shame on Dr Keiji Fukuda!

 

What Is Malaise?

 

So, the question is, Do you know what “Malaise” really is?

I searched even further than I did for the original post for meanings of “Malaise” from other dictionaries, including medical dictionaries and not just Websters, etc.. to explain with it is and why malaise doesn’t even touch what we physically feel with a 10 foot pole!

 

Medical-Dictionary The Free Dictionary

Medical-Dictionary Free Dictionary has 8 different definitions for “Malaise”
from 9 different Medical and Nursing references which are listed below.
So there are multiple sources, no bias.

 

malaise /mal·aise/ (mal-āz´)

a vague feeling of discomfort.

Dorland’s Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.

 

mal·aise (ma-laz, -lez)
n.
A vague feeling of bodily discomfort, as at the beginning of an illness.

The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

 

malaise

Etymology: Fr, discomfort,

a vague uneasy feeling of body weakness, distress, or discomfort, often marking the onset of and persisting throughout a disease.

Mosby’s Medical Dictionary, 8th edition. © 2009, Elsevier.

 

malaise

[malaz]

malaise general term for a vague feeling of generalized discomfort.

Segen’s Medical Dictionary. © 2012 Farlex, Inc. All rights reserved.

 

malaise (melāz´)

n a general feeling of discomfort or uneasiness, often the first indication of an infection or other disease.

Mosby’s Dental Dictionary, 2nd edition. © 2008 Elsevier, Inc. All rights reserved.

 

malaise

Internal medicine A vague feeling of general discomfort, sensed as something “just ain’t right”.

McGraw-Hill Concise Dictionary of Modern Medicine.
© 2002 by The McGraw-Hill Companies, Inc.

 

ma·laise (mă-lāz’),

A feeling of general discomfort or uneasiness, an “out-of-sorts feeling, often the first indication of an infection or other disease.

[Fr. discomfort]
Farlex Partner Medical Dictionary © Farlex 2012

 

ma·laise (mă-lāz’)

A feeling of general discomfort or uneasiness, an “out of sorts”feeling, often the first indication of an infection or other disease.

Medical Dictionary for the Health Professions and Nursing © Farlex 2012

 

ma laise (ma-laz)

A feeling of general discomfort or uneasiness, may be a first indication disease.

Medical Dictionary for the Dental Professions © Farlex 2012

 

Is the “Malaise described above YOUR symptom or is it something else?

My question is,  is the symptom “Malaise” in the

1994 Fukuda Defintion for CFS

symptom that is called

“Post-Exertional Malaise lasting more than 24 hours”

the SAME Malaise in any of the definitions for Malaise from the different medical and nursing sources I posted above, that same “Malaise” you experience?

 

Scratching My Head?!?!?…..

 

Did Dr. Keiji Fukuda or did Dr. Stephen Straus publish their own dictionary that we know of that gave their own meaning for the word “Malaise”?

I did do a search just to double check that and I did not find a Fukuda or Straus Medical Dictionary!

But are we absolutely sure about that?

Could their dictionary be out of print?

Do you think we need to contact the librarian at the NIH to double check that just to make sure?

Do you think we need to contact Dr. Keiji Fukuda over at the WHO to double check with him?

 

Now That We Have That Established!

 

Since I pointed this issue out about the word “Malaise”, is it easy to understand and see why physicians and other healthcare practitioners did not recognize this symptom as a key hallmark symptom of the illness and possibly and probably dismissed it?

Since “Post-Exertional Malaise Lasting More Than 24 hours” was originally listed as the last symptom on the list of the The CDC 1994 Fukuda Definition for CFS that was published in 1994, would it be even more understandable why it was probably missed as the key hallmark symptom of the illness after reading the meaning of the word “Malaise” from all of the different medical sources?

 

PLEASE LEAVE YOUR FEEDBACK!

 

If you happen to be reading this blog post today, please leave some feedback to let us know if the “Malaise” is the same symptom you experience according to the definitions in the medical and nursing sources that I listed above.

Is your symptom the same symptom that is listed in the 1994 Fukuda Definition for CFS“Post Exertional Malaise lasting more than 24 hours” or would you call your symptom something different or a different medical word or description?

 

In other words,

 

Does “MALAISE” have anything to do with your symptom that you experience after activity whether trivial, cognitive, exertional, or exercise?

Please let us know what YOU think the symptom should actually be “called” that you experience!

Thanks so much in advance for your feedback!

I do respond to the posts because I am a conversationalist because I am a people person!  To be a nurse, you have to be a people person.  Even though im not active in the RN field at this time, im still that people person. Once a nurse always a nurse!

So if you do respond in the comments, I will reply back to you! 🙂

Thanks again so much!

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

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About The Other Side Of The Stretcher

Nurse turned patient, but not by choice. I was became a Registered Nurse in 1985 when I was 21 years old. That career was cut short the end of 1994 when I was unable to work anymore because of the illness M.E. or Myalgic Encephalomyelitis. I have 3 adult children including twins, A daughter and 2 sons. View all posts by The Other Side Of The Stretcher

8 responses to “Malaise…Lets discuss this!

  • Greg Foster

    It’s the medical worlds way of demeaning a condition that they understand.
    If they used something like Post Exertion Crippling Exhaustion then they would be under an obligation to treat it. Malaise? Fatigue? Sure don’t we all have that at some time…

  • TheOtherSideOfTheStretcher

    Hi Greg,
    Thankyou for your feedback!
    I knew someone would agree with me 🙂
    I agree, the medical world pulled a fast on there because not many people noticed that one for years!
    The thing that amazes me is how doctors can sit there and look at the patients with a serious poker face while they talk about “malalse” when they of all people should know what “Malaise” really is! 🙂

  • SCIENCE ME

    Malaise my aise…….!
    Crash, collapse, deterioration, pain, every muscle and bone screaming, crawling on all four legs from the couch to the bed, unable to move, unable to get up, for hours, days , month……the last post exertional deterioration was after a game of racket on the beach 9 years ago when I tried to exercise myself through it. I could not get up for three days and it lead to two years of living hell. Loosing hair in patches, unable to breath at night, unable to lift a bottle of water, one leg paralyzed, wheel chair, muscle in nots, excruciating pain, headaches, kidney failure, 24 hours asthma attacks, could not bear normal day light, heart muscle inflammation, high EBV titers, high HH-V 5, hepatitis E, mycoplasma high, Guardia, Amoeba, NKcell activity near zero and god knows what else.

    Does that sound like god damn “malaise” ????????

  • TheOtherSideOfTheStretcher

    I agree, does NOT sound like Malaise!
    Thankyou for your feedback 🙂

  • salkeela

    I had not realised that “malaise” was such a medically pathetic term!! Certainly when I get my post exertional problems, they would NOT fit with the term “malaise”, as described in the above definitions.

    Once in a crash, I find it hard to communicate, I get a speech stoppage, a drunk gait, and my fine motor control goes. I become strongly light and sound intolerant and often get migraine on top of this. Other symptoms include muscle twitches, and a strong need to lie down somewhere quiet.

    And that’s not all either, I need to be incredibly careful about preventing crashes like this, because after each one I have lost something of my previous abilities for good!! AND to compound the problem, after a crash, it will take LESS to induce the next one!

    So the word “malaise” just doesn’t describe the DANGER of allowing a crash to happen.

    Believe me if I just felt a little unwell after a big day out, I’d say “SO WHAT! I’ll have my day out and pay the price of a little malaise for a day or two….”, but that’s not it, is it?

    The damage caused by that so called “malaise” can in my experience be permanent. It is in no way something trifling, vague, or as seemingly insignificant as those medical definitions imply.

    Thanks for pointing his out. ….

  • TheOtherSideOfTheStretcher

    Hi Sally,

    Thanks so much for your feedback 🙂

    I was a Registered Nurse since 1985, so I knew what the symptom Malaise was and Malaise did not apply to this illness

    When I received a copy of the 1994 Fukuda Defintion of “CFS” when it first came out in 1994 from my doctor in NY, Dr Susan Levine, she is one of the researchers, and I took a look at the document when I got into my car, and saw “Malaise: on there I thought, what the heck is this, why is “Malaise” on there, there is no ‘malaise” here.

    I thought it may have been a mistake or a typing error too, so I put it away in my file with all of the other papers I was collecting with information about the illness.

    My kids were babies then, 4 year old twins and a 22 month old, I was too sick to think about what anything said on the paper at that time, I just wanted to get well.

    I always had a doctor who knew the illness, another reason why I didn’t pay attention to that piece of paper.

    In the last few years when I saw how everyone kept fighting for the “PEM” issue, I figured something needed to be said because I didn’t think many people knew what “Malaise” really meant.

    The thing that really upset me more, was how doctors, who are supposed to know this illness, would sit there with a serious “poker” face and say “Post Exertional Malaise” like they were sympathizing with the patients,

    and honestly,

    I saw that as the medical people laughing at this patient group even more, disprespecting patients even more, and I thought how much more is this insanity going to go on because the patients were definitely NOT the insanity issue here.

    I thought enough, this is going to get straightened out and the “Malaise” is going to be thrown out, and we are going to get correct illness criteria!

  • SCIENCE ME

    There is another one BIG plunder, which needs to be tackled. “un- refreshing sleep” . Is this a correct description of the constant severe sleep deprivation we experience ? NO, we –especially teens with ME– sufferer the most severest form of circadian sleep reversal, or delayed sleep onset or non-24 . (Classified by the WHO has a neurological disorder)

    Think about it: un refreshing sleep?????Really ?

  • The Other Side Of The Stretcher

    I harped so much on this Malaise issue because its the wrong word and actually the cause of why people are disabled with this illness because they were ignored because of that word.

    I haven’t thought about the unrefreshing sleep because im not sure there is a proper term at all for the sleep issue. Its definately “not” “unrefreshing” sleep, its deeper and more complex, what it is, I haven’t been able to figure this one out. Another thing that wasn’t researched.

    I personally take Klonopin for sleep and I wake up feeling “refreshed” compared to if I didn’t take it. But I cant tell you what my actual sleep issue or disorder is.

    I think that may be the case for most people, we have been treated with “bandaid” treatment if you think about it. No research, it wasn’t looked into further.

    There are 2 sleep disorders that the sleep specialists diagnose the most and that’s Sleep Apnea and Periodic Limb Movement Disorder.
    There are the other sleep disorders too, but how many of the doctors send patients for sleep studies?

    I don’t know of many people honestly who have had sleep studies.

    I had one because I asked my doctor for an Rx for one when my son was getting one, so when he got his, I had one too, the same night at the same sleep center, and he wouldn’t feel so bad about it, since there were 2 of us, they didn’t charge me a co-pay.

    The sleep center people told me to take my klonopin as usual, so I didn’t have an “abnormal” sleep study. So they didn’t see what the problem was, so I never found out.

    My sons sleep issue was totally different, it was that periodic limb movement disorder and restless legs- which is called something different now I think.

    The Fukuda “definition”, is really just a list of symptoms, its not complete it doesn’t get into the detail like the 2011 ICC Primer or the 2003 Canadian Consensus

    The Fukuda Definition’s list of symptoms is almost same list of symptoms for mononucleosis, our illness isn’t mono, it may be the trigger for some of the patients, but its not the illness.

    If you look on the Mayo Clinic website, these are the symptoms for mono:

    Symptoms
    By Mayo Clinic Staff

    Signs and symptoms of mononucleosis may include:
    •Fatigue
    •General feeling of unwellness (malaise)
    •Sore throat, perhaps a strep throat that doesn’t get better with antibiotic use
    •Fever
    •Swollen lymph nodes in your neck and armpits
    •Swollen tonsils
    •Headache
    •Skin rash
    •Soft, swollen spleen

    Look familiar, doesn’t it. Looks like a case of plagiarism with a few words switched, added and taken away and I don’t think it was by the Mayo Clinic The Mayo Clinic has been around longer than the Fukuda Definition. If you notice, they say what malaise is though.

    You are right, the “Sleep” disorder is another big Plunder or Blunder along with the rest of the list of Plunders.

    The whole thing is a “Plunder”

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