Monthly Archives: July 2014

Final Stages

A fellow sufferer’s final stages, alone with her husband, no support via hospice care. When will this type of thing end for our patient community???

Documenting M.E.

Dear Friends and Family,

This is a post I’ve been putting off for quite awhile. But I no longer have the luxury of putting it off anymore – not if I want it to get written. My personal journey with ME is near its end. A long time ago, after months of deliberation, I made the decision that if my digestive issues ever got to the point where I could no longer get or keep food down naturally, I would not seek life sustaining measures, but would allow the illness to play itself out naturally. I am at that point, and have been for awhile now.

Let me preface this by saying that none of this is a judgment on those severe ME patients who choose to take advantage of technology like nasogastric tubes, hydration IVs, etc in order to remain alive as long as possible. I believe this is…

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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!